tag:blogger.com,1999:blog-80158977145845201672024-03-05T08:12:56.186-05:00TREASURE yesterday DREAM of tomorrow LIVE for todayOur families journey with a life threatening neuro-muscular disease, from searching for a diagnosis to end of life challenges to the grief roller-coaster. PCH1A, a altercation of the VRK1 geneMarci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.comBlogger698125tag:blogger.com,1999:blog-8015897714584520167.post-11423848493666195112021-04-21T21:44:00.008-04:002021-04-22T15:15:30.374-04:00it's your 18th birthday <div dir="ltr"><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;">Tomorrow is almost here. It seems like yesterday was just April 22, 2020. The sun has circled the earth again, it is April 22, 2021, your 18th birthday. It seems like yesterday, I was in the hospital on bedrest waiting for you and Ian to arrive. I remember the day like it was yesterday, calling Daddy to tell him it was time, he needed to come to the hospital. Our little family of 2 was about to double.</div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><br /></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;">At 12:29 PM on April 22, 2003, entered Becca Jordan and at 12:30 PM on April 22, 2003, entered Ian Alexander. Mommy and daddy were in love and our lives were forever changed.</div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><br /></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;">April 22 is a day filled with mixed emotions for you, as it is for us. We take your lead on how to celebrate it each year, this one is no different. We will spend the day at school and work, go to celebrate with Ian, come home and eat some of your and Ian's favorite foods for dinner. </div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><br /></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;">The past year has been like no other. Because of COVID, many of the things which have kept you grounded over the past years were canceled...the Twinless Twins conference and your CIT summer at Camp Lousie. Along with your junior year ending virtual and most of your senior year being virtual...how you have moved through each day has reminded me of why you are my hero.</div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><br /></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;">Becca, you have grown into a beautiful young woman. Yeah, yeah, I know every parent says that about their child...but you have. You have begun to find yourself, to become Becca. You have faced more in your "short" 18 years than most people experience in their lifetime.</div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><br /></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;">You are courageous, wise, and resilient. </div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><b>Courage </b>is the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery. <i>You put one foot in front of the other and face what is put before you. </i></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><b>Wisdom </b>is the quality or state of being wise; knowledge of what is true or right coupled with just judgment as to action; sagacity, discernment, or insight. <i>You are true to yourself while sharing with others what you have learned from your life's journey. </i></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><b>Resilient </b>is springing back; rebounding. Recovering readily from illness, depression, adversity, or the like; buoyant. <i>You keep putting one foot in front of the other, moving through your days, but knowing when you need to take a step back to feel your feelings. <br /></i></div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;">Your courage, wisdom, and resilience have propelled you forward. Fear of the unknown. All the losses, very difficult. </div><div class="gmail_default" style="font-family: tahoma, sans-serif; font-size: small;"><div><br /></div><div>You know how delicate life is and that each day is gifted with no promises of tomorrow. You cherish the smallest of things and savor the moments that come with them. Celebrate the moments that matter to YOU, but remember to open yourself up to others, let them see how beautiful you are, inside and out. There is nothing too insignificant if it matters to you. Keep being, Becca Jordan Scher, just as you are. </div><div><br /></div><div><br /></div></div></div> Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com1tag:blogger.com,1999:blog-8015897714584520167.post-86937470509039548042021-01-01T21:47:00.000-05:002021-01-01T21:47:54.050-05:00A Year Like No Other - Goodbye 2020<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUJxpI2GzqOAKCBF3N7mozRrwIF9w-mCWCK6CGod01PD8XG8JvG1qtpOYhuIRsBuDJdKb6xaowvYTam9hZfc_MSRT8OlNy3HgYuCBCffYcF7Vzxmnc2HO2pvPIgnLX3snFpzxLeHm_Qwo/s1600/1609555672700161-0.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;">
<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUJxpI2GzqOAKCBF3N7mozRrwIF9w-mCWCK6CGod01PD8XG8JvG1qtpOYhuIRsBuDJdKb6xaowvYTam9hZfc_MSRT8OlNy3HgYuCBCffYcF7Vzxmnc2HO2pvPIgnLX3snFpzxLeHm_Qwo/s1600/1609555672700161-0.png" width="400">
</a>
</div>This has been a year like no other.<div><br></div><div>2020 will go in the history books.</div><div><br></div><div>COVID-19.</div><div><br></div><div>It has rocked the world. Rocked our world. Rocked your world. </div><div><br></div><div>We have gone from being out of the house, working, going to school, out to dinner, visiting with friends, doing our thing; to being in the house, 24/7, working from home, schooling from home, cooking at home, not seeing family and friends, only physically seeing those you live with. </div><div><br></div><div>We have lost things, physical things, emotional things, loved ones. We have gained things, time spent with each other, memories and moments we would not of had if it hadn't been for COVID. We have all had COVID birthdays. We have had COVID holidays, COVID parties, COVID gatherings, COVID everything. </div><div><div><div><br></div><div>Brian and I are doing well. We've had and have our struggles, just like everyone else. We have been taking everything as it comes. We haven't killed each other and even on our worst days, still like each other. Working from home, we each have our own office space, going in the office once every other week to every three weeks. That was until Brian became a victim of COVIDs unemployment. Again we are taking it as it comes. We have reverted back into ourselves. It has been a while since we had to isolate, quarantine, for the safety and health of our family. You don't forget how to do it. We have fallen back into that routine pretty easily. For me, I have gone back to my ways from 2016/2017. I don't seem to be reaching out to friends as much. Some is because of all the technology, being online all day, on Zoom meetings. This makes me not want to do more technology when my work day is done. There is something to be said about too much technology. I know I was online, on the computer, all day in the office; yet it was different. There is something to be said about having human to human contact and conversations. The longer this goes on, the more technology gets in the way of the human to human exchanges. The first step is that I have realized this, realized how COVID has affected me, at least, in this one way. The next step - continue to be aware and begin to reach out to others. For now, to those who I haven't been in touch with, please keep your "technology" open when I re-enter.</div><div><br></div><div>Just like most people, life came to a halt in March 2020. No one new what would become of the world. As March turned into April, then into May...many people turned to sharing their feelings on what they were losing out on. How those canceled events were a once in a life time event and what others could/should do to make it "right." So many things to grieve. Grief is not just about losing a loved one, it is also about the loss of events, jobs, homes, etc. We all grieve for different things in different ways. There is no right or wrong way for grief. We need to find our own ways to grief and make things "right".</div><div><br></div><div>Summer plans were cancelled and for Becca that meant not attending her two happy places -- Camp Louise and the Twinless Twins Conference. Both of which gave Becca peace and a place where she could leave the world behind and be "her" without having to explain anything about being her. At camp, she is able to be carefree. Being screenfree gives her a sense of freedom in a different way from the rest of the year. At the Twinless Twins conference, Becca doesn't have to explain herself and her life. Everyone there is "broken" in the same way. Not only was she going to miss being at camp, this was her CIT summer. For those who have attended a sleepaway camp, you know how much CIT summers mean. Camp did an amazing job with virtual activities and training. They spent 5 weeks, 3-4 times a week, getting to know each other over zoom. Twinless Twins canceled the in-person conference and did a virtual one. With the TTSGI 2021 conference to take place in Denver. As I am typing this post, I received an email from TTSGI, stating they are postponing registration for Denver until April as they continue to monitor COVID updates, vacanations, and travel options. Camp for 2021, is scheduled to happen with modifications due to COVID, to operate in their own "camp" bubble. Becca is planning on working there, while she is waiting for a contract to make if official. First year on staff, eighth summer. </div><div><br></div><div>When schools closed in the middle March, I don't think anyone thought they wouldn't be going back. Becca finished her junior year of high school at home. All end of the year in-person programs cancelled...band concert, junior prom, saying goodbye to friends for the summer, or saying thank you to her teachers. So much more continued to be cancelled or postponed. SATs, ACTs, college visits, and travel plans. Just like so many others, she had to figure out what all of this would mean for her future. Many colleges went test optional for the class of 2021. As the months turned into summer, Becca continued to figure things out amongst her losses. The class of 2021 has lost so much, the end of their Junior year and all that comes with their senior year. I say this as I don't expect our county school system to have the kids back in the buildings before the end of the year. While this year had been one of the worst for Becca, besides 2016, there have been some good, happy, proud moments.</div><div><br></div><div>College acceptance letters have been arriving, along with merit scholarships to go with them. Masks on and while socially distanced, we have been able to visit some of the colleges Becca was accpeted to. These visit have allowed Becca to decide these schools/programs are not the right fit for her. While awaiting some more information and visiting a few more schools, Becca, along with our help, will decide where she wants to spend the next chapter and become a part of the class of 2025. </div></div><div><br></div><div>She got her drivers license. Woo hoo. She has been doing well, getting out a little bit, running to the store for us.</div><div><br></div><div>The highest award a girl scout can earn is the Gold Award. Lots of work and time go into earning this award. Certain requirements must be done before one is able to submit their proposal for approval. Becca's proposal has been approved and she is in the process of developing a video to raise awareness for rare diseases. </div><div><br></div><div>As we say good bye to 2020 and welcome 2021, we continue to grief for the things we have lost and will most likely lose in 2021, but continue to look for the good and find ways to make things work. 2020 has been a year like no other, one of the most horrible years we have had...a bittersweat year. </div><div><br></div><div>Here are 12 things to consider as we close the door on 2020:</div><div>1. The dumbest thing I ever bought was a 2020 planner.</div><div>2. I was so bored I called Jake from State Farm just to talk to someone. He asked me what I was wearing.</div><div>3. 2019: Stay away from negative people. 2020: Stay away from positive people.</div><div>4. The world has turned upside down. Old folks are sneaking out of the house & their kids are yelling at them to stay indoors!</div><div>5. This morning I saw a neighbor talking to her dog. It was obvious she thought her dog understood her. I came into my house & told my cat. We laughed a lot.</div><div>6. Every few days try your jeans on just to make sure they fit. Pajamas will have you believe all is well in the kingdom.</div><div>7. Does anyone know if we can take showers yet or should we just keep washing our hands?</div><div>8. This virus has done what no woman has been able to do. Cancel sports, shut down all bars & keep men at home!</div><div>9. I never thought the comment, "I wouldn't touch him/her with a 6-foot pole" would become a national policy, but here we are! </div><div>10. I need to practice social-distancing from the refrigerator.</div><div>11. I hope the weather is good tomorrow for my trip to the Backyard. I'm getting tired of the Living Room.</div><div>12. Never in a million years could I have imagined I would go up to a bank teller wearing a mask & ask for money.</div></div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-44734321579506610802020-09-14T15:04:00.000-04:002020-09-14T15:04:52.170-04:00September 14th...A Day That Will Never Be Right...Wednesday, September 14, 2016<div>Our last day together on earth. The last 24 hours together.</div><div>Little did we know, this was the case.</div><div>Little did we know, when we said good night to you, kissed you good night, told you to sleep well, and that it was okay for you to go to heaven...</div><div>Little did we know, you would listen to us so soon. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4BnWPWZ2k4CHG-UoRS-NXV1juDbJaalkQLD_yrJmZfumwBh5ddyoeC7RsOXlvgOX69u-Gj4yCDOFlj2ktE2GrgG6a_J26qWqPKbC4vxQxiM2vUVTThvayBUtpkr7JShdKi35Qbw7Bor8/s640/family.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="427" data-original-width="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4BnWPWZ2k4CHG-UoRS-NXV1juDbJaalkQLD_yrJmZfumwBh5ddyoeC7RsOXlvgOX69u-Gj4yCDOFlj2ktE2GrgG6a_J26qWqPKbC4vxQxiM2vUVTThvayBUtpkr7JShdKi35Qbw7Bor8/s320/family.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaM6ZdbekpK3Q9Bs4-Ul2D9GmRNG5NQTS3B06vmteJBn2ZXR3UqcB8-GRUh6Rd9MGgBytFgLx8XpZWOsMUfDN1gjY6V3QWQ0-SE-ujLbFKeLJbmTAZnX9EUgS_dS6EREYuTdoCKhU3tpU/s442/20200430_155548.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="291" data-original-width="442" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaM6ZdbekpK3Q9Bs4-Ul2D9GmRNG5NQTS3B06vmteJBn2ZXR3UqcB8-GRUh6Rd9MGgBytFgLx8XpZWOsMUfDN1gjY6V3QWQ0-SE-ujLbFKeLJbmTAZnX9EUgS_dS6EREYuTdoCKhU3tpU/s320/20200430_155548.jpg" width="320" /></a></div><br /><div><br /></div><div>September 14, 2016 </div><div>Your last 24 hours. </div><div><br /></div><div>September 14, 2020</div><div>All I can think about is how 4 years ago, it was your last day. What I would give to have known it was to be your last. I would have laid with you all day. Cuddled and kissed you all day. I want to scream as loud as I can so you can hear me in Heaven. I want to carry on like a toddler, have a tantrum, so maybe I will feel better, so maybe the emptiness I am feeling will go away. I know in my mind and heart that it won't matter how much I carry on, the emptiness will be there, at least a little piece each and every day.</div><div><br /></div><div> <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOYzdVwRtLL_-6Xst3IW4aYAP2aRdyQLYld6QV_PBAsDs4yKBmUvaSbWJI6gq88g36fnDg_pxDWapBagF-u9V5wXRwLpcnYw_ZCQqs5KBmNsRYw-K7791ddRj-kqt_bpJJnVsFVtG4H7k/s1632/FB_IMG_1551737190839.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1632" data-original-width="1224" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOYzdVwRtLL_-6Xst3IW4aYAP2aRdyQLYld6QV_PBAsDs4yKBmUvaSbWJI6gq88g36fnDg_pxDWapBagF-u9V5wXRwLpcnYw_ZCQqs5KBmNsRYw-K7791ddRj-kqt_bpJJnVsFVtG4H7k/s320/FB_IMG_1551737190839.jpg" /></a></div><br /></div><div style="text-align: left;">Many days I celebrate you. </div><div>I celebrate the twinkle in your eyes when you laughed. </div><div>I celebrate your smile which could light up a room and make a bad day a better one.</div><div>I celebrate all they days we had with you, approximately all 4,880 of them.</div><div>I celebrate all you taught your sister, mommy and daddy.</div><div>I celebrate all you taught everyone who came to know you.</div><div>I celebrate all the love we shared with each other.</div><div>I celebrate all the days you have been in Heaven pain free.</div><div>I celebrate all the days you have been in Heaven playing video games, not getting frustrated with me because I sucked at them.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4lQdniYizsYp9q98d_FCb7CCHB01eLmG4-gAl0dD70rWXCRzpfy0yXqbT14Hl19bD8Q34P3Waw12r9xR3ndvNVKrQBP29PUE9-zg8AVqwNxRI1EYSWRIBP9D90mBIhGj-xuYfaxSv94/s720/FB_IMG_1542930854987.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4lQdniYizsYp9q98d_FCb7CCHB01eLmG4-gAl0dD70rWXCRzpfy0yXqbT14Hl19bD8Q34P3Waw12r9xR3ndvNVKrQBP29PUE9-zg8AVqwNxRI1EYSWRIBP9D90mBIhGj-xuYfaxSv94/s320/FB_IMG_1542930854987.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div><br /></div><div>I celebrate all the days you have been in Heaven with all our other family members taking care of you or maybe you taking care of them...it really could go either way.</div><div>I will continue to celebrate you. </div><div>I will continue to celebrate you, while not being sad (most of the time).</div><div>I will continue to celebrate you.</div><div>I will continue to say your name - </div><div style="text-align: center;">IAN ALEXANDER SCHER</div><div style="text-align: left;">But today, I will celebrate you while I have my tantrums.</div><div style="text-align: left;">But today, I will celebrate you while I am missing every inch of you with every inch of me.</div><div style="text-align: left;"><br /></div><div style="text-align: right;"><img border="0" data-original-height="2048" data-original-width="1367" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5p5sTACU0ERY3jOjE-HnVmVcGIHvL6yU-OhmYrUCe_imPXfgvY2pQRN0nIbqt6Qkk0XXPX-fgnKK4IPMvIPWSfOaoFyxOTQ9jctEz6bSIM1kV2fncJ48JBeljBAb6bHyKJtgqhs6AApk/w268-h400/UA+edit-798_original.jpg" width="268" /></div><div style="text-align: left;"><br /></div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-69417364329159178242020-08-30T13:21:00.000-04:002020-08-30T13:21:31.363-04:004th Yahrzeit - 12 Elul - September 1 - September 15<span id="docs-internal-guid-ba34c89c-7fff-0377-ff2f-de7f4f5bad01"><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><span face="" style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">How has it been another year? Another 365 days? 12 Elul 5776, 15 September 2016. 12 Elul 5780, 1 September 2020. </span></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><span face="" style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><span face="" style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Ian Alexander Scher <i>Z"L. </i></span></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><span face="" style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><font face=""><span style="white-space: pre-wrap;">Most days it still doesn't seem real. I long to hear his voice when I walk into the house. I long to see his smile. I long to see the twinkle in his eyes. I long to hug him. Maybe I even long to do his treatments and give him his medicines. I long for the noises from the ventilator, the VEST, the cough assist, and the suction machine. I long for all the people coming in and out of the house. I LONG FOR HIM. I long for all of those things that made Ian, Ian. </span></font></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><font face=""><span style="white-space: pre-wrap;"><br /></span></font></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><font face=""><span style="white-space: pre-wrap;">That last night, Wednesday, September 14, 2016, Brian and I gave Ian </span></font><i style="white-space: pre-wrap;">Z"L</i><font face=""><span style="white-space: pre-wrap;"> permission to go to heaven. We told him, we would be OK; Becca too would be OK (he specifically asked "Becca be OK"). We told him, being OK could mean many different things, and </span></font><span style="white-space: pre-wrap;">eventually, we would be OK. Sometimes when I close my eyes, I can still see the smile he had on his face when we told him it was okay to go to heaven, that he didn't have to fight anymore. That we would be OK. We kissed him good night, told him to sleep well, just like we did every night. Sometime during his sleep, he listened to us, he took our permission and went to heaven. From that moment on, our lives changed forever, never to be the same again. </span></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><span style="white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><span style="white-space: pre-wrap;">There isn't a second, a minute, an hour, a day, a week, or a month... when I don't LONG for him. "OK" "Okay" "ok" "OKAY" One can say "ok", as many different ways as one wants, it won't matter. OK is just OK and that is all it ever will be. Some days, OK </span><span style="white-space: pre-wrap;">is not even what I am. Some days, all I want to do is stay in bed. Some days, I want to scream at the universe, to tell the universe it sucks. Some days, it takes everything to just be. We have figured out this life without him, on some days. We have figured out how to laugh without him, on </span><span style="white-space: pre-wrap;">some days</span><span style="white-space: pre-wrap;">. We have figured out joy without him, on </span><span style="white-space: pre-wrap;">some days</span><span style="white-space: pre-wrap;">. We have figured it out, on </span><span style="white-space: pre-wrap;">some days. </span><span style="white-space: pre-wrap;">We are still figuring it out and always will be figuring out living life without him. </span></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikAltlxkebD6m_629i1lpmcAAvY0C-HMDgSUHAOxbweHkdfXEOVmZQ1Er3nIL789tmPqLg1sO2ngHJPZgEhyphenhyphenfeLCzN3OTShPk2cNsuKd6wDGz0z48cBlzdf7aojVfVb5Ydj5MkHFaShsk/s591/IMG_20200710_185357_515.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="591" data-original-width="406" height="473" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikAltlxkebD6m_629i1lpmcAAvY0C-HMDgSUHAOxbweHkdfXEOVmZQ1Er3nIL789tmPqLg1sO2ngHJPZgEhyphenhyphenfeLCzN3OTShPk2cNsuKd6wDGz0z48cBlzdf7aojVfVb5Ydj5MkHFaShsk/w325-h473/IMG_20200710_185357_515.jpg" width="325" /></a></div><p></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">I started binge-watching Grey's Anatomy about 6 weeks ago. Grey's Anatomy is a television drama where life-or-death consequences occur on a daily basis, helping the doctors of Grey Sloan Memorial Hospital and reminding us, the viewers, continually realize neither relationships nor medicine is ever black and white.<br /></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><b>Season 11, Episode 22</b></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><b>Amelia is pacing on the deck at the dream house. Owen appears and greets her. He says it's good to see her. It felt to him like he's been away forever, but nothing's changed. Amelia is beginning to unravel, so to speak. She says "<span face="">I’ve got the dead-Derek</span><span face=""> </span><span face="">thing completely managed. ... </span>I am entertaining -- joke, joke, joke! I’m funny! I’m fun! I’m a party! I’m doing -- I’m great! I’m handling the dead-Derek thing really well. [chuckles]" </b></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">Derek was Amelia's brother. Amelia is a drug-addict in recovery. She has been sober for 1,321 days. <b>She continues to tell Owen, "I was fine. It was managed. ..."</b><br /></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">And this is where it gets me. </p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><b>Owen tells Amelia. </b></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><b>"All the stuff you're ... managing... you're not supposed to be managing it. You're supposed to be feeling it -- grief, loss, pain. It is normal." </b></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><b>Amelia tells Owen, it's not normal. </b></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><b>Owen looks at Amelia and says, "It is. It is normal. It's not normal to you <span style="white-space: pre-wrap;">‘cause you’ve never done it. Instead of feeling it, feeling the grief and the pain, you’ve shoved it all down and you do drugs instead. Instead of moving through the pain, you run from it. You… instead of dealing with being hurt and alone and afraid that this horrible, empty feeling is all there is, I run from it. I run off, and I sign up for another tour of active duty. We do these things. We run off, and we -- we medicate. We do whatever it takes to cover it up and dull the sensation, but it’s not normal. We’re supposed to feel. We’re supposed to… love… and hate… and hurt… and grieve and break and… be destroyed and… rebuild ourselves to be destroyed again. That is human. That is humanity. That’s -- that’s… that’s being alive. That’s the point. That’s the entire point. Don’t -- don’t avoid it. Don’t… extinguish it." </span></b></p><p dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;"><b><span style="white-space: pre-wrap;">He continues, "Y</span><span style="white-space: pre-wrap;">ou’re gonna be okay. You’re gonna survive this, okay? Everybody does. It’s perfectly normal. It’s boring, even." "IT'S SO NORMAL."</span></b></p><p style="text-align: left;"><b><span>"I have to believe there's a way. There has to be a way to step off the carousel. Start again. Start fresh. There has to be a way to leave all my ghosts behind. It's a choice. It's a choice I'm making. To move forward. To move past this. I can do that. I can do that. All I have to do is begin."<br /></span><span><i>--Ellis and Meredith Grey</i></span></b></p><p style="text-align: left;">The words Owen spoke to Amelia, "<i>We're supposed to feel. We're supposed to... love... and hate... and hurt... and grieve and break and... be destroyed and... rebuild ourselves to be destroyed again. That is human. That is humanity. That’s -- that’s… that’s being alive?. That’s the point. That’s the entire point. Don’t -- don’t avoid it. Don’t… extinguish it."</i> We have felt the love, hate, hurt, grief, been broken, been destroyed, rebuilt ourselves, and been destroyed again... to start over again. </p><p style="text-align: left;">Some days, I hate myself for not protecting Ian <i style="white-space: pre-wrap;">Z"L</i>. Some days, I hate myself for being the reason he suffered, the reason he had Pontocerebellar Hypoplasia Type 1A. Some days, I hate myself for not being able to save his life. Those are the days when I hate God, when I want to know why, why Ian <i style="white-space: pre-wrap;">Z"L</i>? Why Becca? Some days, I hate myself for not being able to protect Becca from all she has endured at an early age. Why could I not protect them? Why God? Universe why? Those are the days, I hate myself, the life we have to live without Ian <i style="white-space: pre-wrap;">Z"L</i>. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWjiq3B70HGP0iwKEK9oex3r0MQqlUeVBBChnhyphenhyphenIbysE-JZb4wys4F9Vz_HRvxazC1cbkd53vBzk1ykcr0qUzUziNUW5TaptS3-6wYqo5K7p0Ljy4_f-qY_VRgrcGotEnQgnF8VZnmAtg/s736/FB_IMG_1596224087252.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="736" data-original-width="736" height="410" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWjiq3B70HGP0iwKEK9oex3r0MQqlUeVBBChnhyphenhyphenIbysE-JZb4wys4F9Vz_HRvxazC1cbkd53vBzk1ykcr0qUzUziNUW5TaptS3-6wYqo5K7p0Ljy4_f-qY_VRgrcGotEnQgnF8VZnmAtg/w410-h410/FB_IMG_1596224087252.jpg" width="410" /></a></div><p style="text-align: left;">Some days, I am OK. Some days, I know I could not protect Ian <i style="white-space: pre-wrap;">Z"L</i> from Pontocerebellar Hypoplasia Type 1A. Some days, I know I could not protect Becca from Pontocerebellar Hypoplasia Type 1A. Some days, I know I could not save his life, I could not save her from all she has endured at a young age. Some days, I know I won't get the answers to why. Some days, most days, I am forever grateful and blessed for the days we had with Ian Alexander Scher <i style="white-space: pre-wrap;">Z"L</i>. He made us better then and still does now. Seeing all the ways Becca has grown over the past four years -- from not being able to say his name or talk about him in the first months to reading her CIT campfire letter and the beginnings of her college essay relating to how Ian, <i style="white-space: pre-wrap;">Z"L,</i> Pontocerebellar Hypoplasia Type 1A, and Twinless Twins have impacted her. How all she has endured has molded her into who she is today and will continue to become. </p><div style="text-align: left;"><b>The Yahrzeit candle<br /></b>In Chapter 20, verse 27 of the Book of Proverbs, it provides, <i>"The soul of man is the candle of God." </i>The Yahrzeit candle reminds people of the fragility of life and encourages them to embrace their life and that of their loved ones. A candle is often believed to be a symbol of the soul. This is one of the core reasons that candles are such an integral part of the Jewish religion. Although Jewish law sets forth a structured period of mourning and traditionally provides that mourners not overly grieve the loss of a loved one, the Yahrzeit is one of the rituals each year when it is encouraged to remember, memorialize, honor and commemorate loved ones. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">Yet, I want more days. What I would give for more days. And for that, I am not OK. I will never be OK. I will always say his name. I will scream his name. <br /><div style="text-align: center;">Ian Alexander Scher <i style="white-space: pre-wrap;">Z"L </i></div><div style="text-align: left;">My heart will always be broken. I am a mother of two, of twins. I want more days. Since I can't have more days with him, I will always, always, say his name, talk about him, remember him.</div></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUkgKvAxnxdJc-n1SBQ6HOgQ4e_gAcsleMdXefCx1zruVUopm9Dh7SP1xECRMTuT1ei9sUtEowGRnh782HO8KFA6b2EaNVqxB5iKj3kE5MKlZIhMuDmgk1NQC3NDofWVghfX9jblcG3xg/s2048/20200108_095122.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1833" data-original-width="2048" height="366" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUkgKvAxnxdJc-n1SBQ6HOgQ4e_gAcsleMdXefCx1zruVUopm9Dh7SP1xECRMTuT1ei9sUtEowGRnh782HO8KFA6b2EaNVqxB5iKj3kE5MKlZIhMuDmgk1NQC3NDofWVghfX9jblcG3xg/w410-h366/20200108_095122.jpg" width="410" /></a></div><br /><p style="text-align: left;"><br /></p></span>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-79080592171650069992020-07-04T17:35:00.001-04:002020-07-04T17:35:42.090-04:00Hope 365: Day 20 of Daily Meditations of the Grieving Heart<i>Grief can weaken even the strongest mind and cause it to question.</i><div><br /></div><div>I never understood what grief did to the mind until I was flattened by grief when my son died. I couldn't make the simplest decision of what to eat for breakfast. I would lay in bed for over an hour trying to decide if I should make coffee or tea. Next on the list was what to wear. It got to the point that I had to write down a list the night before and then I would toss and turn in bed wondering if I had made the right decision.</div><div><br /></div><div>When loss occurs and grief enters our hearts, our minds are confused. We no longer have normalcy as our everyday thermometer. Chaos is the norm, and even the simplest of things don't make any sense. Tomatoes and cheese or tomatoes and cucumbers? It's frustrating, and it's frightening. It's a wonder that we remember how to breathe in and breathe out. Truth be known, sometimes we don't remember. That's how grief affects our mind!</div><div><br /></div><div>It gets better, but it takes time and patience. We get so frustrated with ourselves because we realize how disorganized our world has become but we simply don't have the strength or the ability to make a simple decision.</div><div><br /></div><div>Baby steps...remember to take baby steps. Accomplish one thing today. Make one decision today. And, another one tomorrow. In time, you will be walking once again.</div><div><br /></div><div><b>Even small decisions seem like mountains in the early days of grief. Be patient. It won't be like this forever. One step, one decision at a time. </b></div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-43774642412497560982020-07-04T17:24:00.001-04:002020-07-04T17:24:31.838-04:00Hope 365: Day 21 of Daily Meditations for the Grieving Heart<i>We must let go of the life we planned in order to accept the life that is now waiting for us.</i><div><i><br /></i></div><div>Life rarely goes as planned. In fact, I don't know too many people who have set out in a direction and have stayed the course achieving all the goals that were set before them.</div><div><br /></div><div>Instead, life is full of all kinds of highs and lows and unexpected twists and turns. There are unforeseen tragedies that come into our lives, leaving us wondering why we even took the time to set goals. This is especially true when the grief of loss enters into our lives. We never plan on losing a loved one, especially a child. No parent ever thinks about burying their child, and yet this happens more often than we'd like to think.</div><div><br /></div><div>Life is full of changes and when tragedy strikes we must learn to eventually let go of the plans we once made and learn how to live within the new life that is now ours. Is this easy? Absolutely not! But, we draw strength from seeing others who have gone before us. They have forged the way for us and have shown us that it can be done. The inner will to survive amid life's greatest tragedies is stronger than we think!</div><div><br /></div><div><b>I cannot always choose the path that is before me, but I can choose the attitude I will have about the journey.</b></div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-87032001152481609592020-07-03T14:54:00.000-04:002020-07-03T16:03:24.815-04:00Fuck Rare Disease<div><br /></div><div style="text-align: center;"><img border="0" data-original-height="378" data-original-width="377" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzv7aGUoJAd3pOQTTJoOXyrK3jwu9HLV1TTQAkNW2mKj43xn5nA8D02HB9XiqGI6aA9Smc0soPZ2bKpNei1PxAccIaHg8rR6ppZZdar-tboTA7vQ18CcwUIFSumw-gidwYuSZEio7NXj8/s320/IMG_20200703_140836_340.jpg" /></div><div>Up.</div><div>Down.</div><div>Good.</div><div>Bad.</div><div>Trigger.</div>We all have them.<div>In every moment. </div><div><br /><div>Life.</div><div><div><div>Up.</div><div>Down.</div><div>Good.</div><div>Bad.</div><div>Trigger.</div></div><div><br /></div><div>July 4th weekend is one of those for me, for us. </div><div>July 4th weekend, 11 years ago, we were first introduced to VRK1-PCH1A. </div><div>At the time, we didn't know the name or the letters. </div><div>July 4th weekend, 8 years ago, we were re-introduced to VRK1-PCH1A. </div><div>This time with the name and letters. <span style="font-size: calc(var(--rem) * 1px * 1.0625); letter-spacing: 0px;"> </span></div><div>Not understanding what this meant for the now and future.</div><div><br /></div><div>Having no idea what this all meant for us. </div><div>Having no idea, this is where we would be</div></div></div><div>11 years later.</div><div>8 years later.</div><div><br /></div><div>One thing I know for sure is we are better for having Ian in our lives. He was so much more than VRK1-PCH1A. He was Ian. Our imperfectly, perfect son. All boy. Funny. Smart. Caring. Pain in the ass. Courageous. He was all of that and so much more. </div><div><br /></div><div>One thing I know for sure is we are all better for having Becca in our lives. She is so much more than a Twinless Twin. More than a sibling of VRK1-PCH1A. She is our imperfectly, perfect daughter. All girl, well maybe not. Smart. Caring. Courageous. Resilient. Empathetic. So much more. </div><div><br /></div><div>VRK1-PCH1A has impacted our lives.</div><div>VRK1-PCH1A has changed us. </div><div>We are forever changed by Ian, for living, for fighting, for dying. </div><div>We will never be who we were before.</div><div>Before 11 years.</div><div>Before 8 years.</div><div>Before...</div><div><br /></div><div>One thing I know for sure, I will always say FUCK RARE DISEASE. </div><div>One thing I know for sure, we are who we are because of our family.</div><div>The silver lining.</div><div><br /></div><div>This July 4th weekend is hard for me. Last night, I was sad. Angry. Not at Ian. Not at Becca. Not at Brian. Not at myself. But still angry. My broken heart was missing him. What I would give for</div><div>One more look at his face.</div><div>One more smile.</div><div>One more cluck.</div><div>One more sparkle in his eyes.</div><div>One more hug, even the ones you had to help him put his arms around you (those were the best)</div><div>One more I love you.</div><div>One more... </div><div><br /></div><div>My heart does find happiness and joy. I don't feel guilty for those things anymore, at least not all the time. Everything is not bittersweet. </div><div><br /></div><div>I will always say </div><div><br /></div><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><div style="text-align: left;"><font color="#d52c1f" face="verdana" size="6"><b>FUCK RARE DISEASE</b></font></div></blockquote></blockquote></blockquote></blockquote>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-74479586851073568032020-05-16T13:16:00.001-04:002020-05-16T13:16:24.048-04:00Finding Comfort in Places You Question<div><font color="#3367d6">With COVID-19, so many are passing away, so many are grieving the loss of a loved one as well as the loss of canceled and postponed events. Recently, I came across this article on Jewish funeral prayers and poems. Over the years, I have struggled with religion, being Jewish, what it means to me, to my family, to our journey ... my beliefs come and go. Yet, I do find comfort in the prayers and poems below. <br /><br />My hope that with all the world is going through during this pandemic, others, regardless of your religion and beliefs, will find comfort in them as well,</font></div><div><br /></div><div>As a religion primarily focused on life, Judaism has a set way to cope with death, Mary passages in the Bible and the Talmud talk about living well--and suggest ways to make other people's lives better.</div><div>Yet, Judaism still provides a way for mourners to transition through stages of grief. With prayers, compassion, and rituals, it serves as a guide through tragic times. </div><div><br /></div><div>Even as a religion passed down by word of mouth, many prayers have survived. These are like poetry, intending to exalt G-d and provide hope to mourners at a Jewish funeral.</div><h3 style="text-align: left;">mourner's kaddish</h3><div>Kaddish prayers are a cornerstone of Judaism. They provide an opportunity for mourners to praise G-d's name and acknowledge their pain. The term comes from an Aramaic word which means 'holy.' This praise is obvious in an excerpt of the prayer:</div><div><br /></div><div><i>"May His great name be kept magnified and sanctified in the world that is to be created anew, where He will revive the dead, and raise them up to eternal life; and rebuild the city of Jerusalem; and establish His Temple in its midst; and uproot alien worship from the earth and restore the worship of Heaven to its place. May the Holy One, blessed be He, reign in HIs sovereignty and glory, during your life ring your days."</i></div><div><i><br /></i></div><div>The Kaddish provides hope. In the Jewish faith, G-d will resurrect the righteous to experience eternal life. This allows mourners to believe that they will see their loved ones again. The Kaddish also serves as a guide through many complex stages of grief. One of the issues with a Western approach to grief is speed.</div><div><br /></div><div>Grief makes people uncomfortable. It's hard to cope with. The bereaved 'should' sweep all their emotions under the rug as soon as possible. It's even a subject of praise. Mentioning how 'strong' someone is, or how 'well they're holding up' is common in Western culture.</div><div><br /></div><div>This can make someone feel like everyone has forgotten the deceased. They may feel that they're expected to move on as if nothing happened. In Judaism, this isn't the case. When a close relative passes away, a Kaddish is recited by mourners for eleven months. This allows a slow transition back into the ordinary world. </div><h3 style="text-align: left;"><i>el maleh rachamin</i> (Jewish Prayer of the Dead)</h3><div>The phrase <i>'el maleh rachamin'</i> translates to 'G-d full of compassion'. Indeed, this prayer is a call to G-d's compassionate nature. In Jewish thought, souls go to paradise after death. This prayer pleads with G-d to give them rest and contentment in the next world. Asking G-d to have mercy is a tradition in the Jewish faith. An excerpt from the prayer demonstrates this:</div><div><br /></div><div><i>"Oh G-d, full of compassion, who dwells on high, grant true rest upon the wings of the Divine Presence, in the exalted spheres of the holy and pure ... Therefore, may the All-Merciful One shelter him with the cover of His wings forever, and bind his soul in the bond of life. The Lord is his heritage, may he rest in his resting-place in peace; and let us say: Amen."</i></div><div><h3 style="text-align: left;">psalm 90</h3></div><div>The psalms are a cornerstone of the Jewish liturgy and faith. They express a broad range of emotions. From anger with G-d to heart-stopping sorrow, to endless joy, the Psalms are a form of human expression. The extent of emotions they discuss is why they are commonly used in funerals.</div><div><br /></div><div><i>"My protector, You are our abode, one generation to the next, Since before the mountains came to birth, before the birth pangs of the land and world. From eternity to eternity, You are divine. Truly, a thousand years are in your eyes like yesterday--so quickly done it pass--or like the watchman's nighttime post. You pour upon them sleep, they sleep ... At dawn, life blossoms and renew itself; at dusk, it withers and dries up."</i></div><div><br /></div><div>King David, a figure who experienced much personal loss, is said to have written many of these Psalms.</div><h3 style="text-align: left;">life is a journey by Alvin Fine</h3><div>Poetry has been a vehicle of expression for millennia. It preserves emotions, history, and cultural elements, Without poems, many parts of our history would be lost. Judaism relies on poetry, as shown by the Psalms. This excerpt from a funeral poem illustrates the cyclical nature of life.</div><div><br /></div><div><i>"Birth is a beginning and death a destination; / But life is a journey. / A going, a growing from stage to stage: / From childhood to maturity and youth to old age. / From innocence to awareness and ignorance to knowing: / From foolishness to discretion and then perhaps, to wisdom."</i></div><div><i><br /></i></div><div>The goal of attaining the wisdom to pass on to others is present in this poem.</div><h3 style="text-align: left;">psalm 23</h3><div>This Psalm is common in both Christian and Jewish services. It provides comfort and emphasizes reliance on G-d. It also expresses the hope that the deceased will "abide in the house of the Lord forever."</div><div><br /></div><div><i>"The Lord is my Shepherd; I shall not want. He has me lie down in green pastures, He leads me beside the still waters. He reviews my soul; He guides me on paths of righteousness for His glory. Though I walk through the valley of the shadow of death, I fear no harm, For you are with me ... Surely goodness and mercy shall follow me all the days of my life, And I shall abide in the house of the Lord forever.</i></div><h3 style="text-align: left;">what is man</h3><div>This prayer is composed of many Psalms pieced together. As a harmonious whole, it talks about how short life is. The fleeting nature of life is a cornerstone of Judaism. Since life is so short, shouldn't we make the most of it by honoring G-d and doing good to others?</div><div><br /></div><div><i>"O Lord, what is man that You regard him, or the son of man that You take account of him? Man is like a breath, his days are like a passing shadow ... So teach us to treasure our days that we may get a wise heart. Observe the good man, and behold the upright, for there is immortality for the man of peace. Surely G-d will ransom my soul from the grace; He will gladly accept me ... The dust returns to the earth as it was, but the spirit returns to G-d who gave it."</i></div><h3 style="text-align: left;"><i>psalm 121</i></h3><div>Another Psalm, this one talks about G-d's role as a guardian. It affirms G-d was watching out for the deceased. It states that G-d is in control with a plan that spans the ages.</div><div><br /></div><div><i>"...If I raise my eyes to the hills, from where will my help come? My help comes from ADONAI, the maker of heaven and earth. He will not let your foot slip -- your guardian is not asleep. No, the guardian of Isra'el never slumbers or sleeps. ADONAI is your guardian; at your right hand. </i></div><h3 style="text-align: left;">we remember them</h3><div>This prayer is a formal performance. It's structured as a back-and-forth dialogue between a synagogue leader and a congregation. This prayer requires community participation.</div><div><br /></div><div><i>"IN THE RISING of the sun, and in it's going down, we remember them. From the moment I wake till I fall asleep, all that I do is remember them. In the blowing of the wind and the chill of winter, we remember them. On the frigid days of winter and the moments I breathe the cold air, I warm myself with their embrace and remember them. In the opening of buds and the rebirth of spring, we remember them. As the days grow longer and the outside becomes warmer, I am more awake and I remember them."</i></div><h3 style="text-align: left;">blessing of the mourners</h3><div>One of the key features of a Jewish funeral is ensuring that mourners receive support. This blessing reminds mourners that they aren't alone. Their grief doesn't exclude them from the community. As a gentle tradition of reminder, it serves its purpose.</div><div><br /></div><div><i>"Those who are worn out and crushed by this mourning, let your hearts consider this. This is the path that has existed from the time of creation and will exist forever. May have drunk from it and many will yet drink. As was the first meal, so shall be the last. May the master of comfort you. Blessed are those who comfort the mourners."</i></div><h3 style="text-align: left;">when all that's left is love by Rabbi Maller</h3><div>In all cultures, there's talk of living like the deceased would have wanted. Sometimes, it's the only way to pick up the pieces and move on from the tragedy. This poem talks about how the deceased want their loved ones to mourn them.</div><div><br /></div><div><i>"When I die / If you need to weep / Cry for someone / Walking the street beside you. / You can love me most by letting / Hands touch hands, and / Souls touch souls. / You can love me most by / Sharing you Simchas (goodness) and / Multiplying your Mitzvot (acts of kindness). / You can love me most by / Letting me live in your eyes / And not on your mind."</i></div><h3 style="text-align: left;">the circle of life</h3><div>Judaism's focus on the circle of life is comforting. Life begins, life ends, and it's all part of the world. Judaism doesn't despair and wish the world was different. Rather, it focuses on the hope of resurrection, eternal life, and reuniting with loved ones.</div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><div><div style="text-align: left;"><font size="2">Published on 11/1/2019 on www.joincake.com</font></div></div></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote><div><span><a name='more'></a></span><b>Cassie Barthuly</b></div><div>Cassandra Barthuly is a freelance writer who helps elderly audiences access information they need in the health and wellness, technology, and healthcare industries. To accomplish this, she's partnered with a wide range of companies across the United States. She has reached local audiences by writing radio scripts, newspaper articles, and scripts for video commercials. Cassandra has also created blog posts, presentations, social media copy, case studies, and more. While freelancing, Cassandra also works with a technology training company as a content developer and marketing associate. She loves comic books, swimming, skiing in the Rockies, and reading young adult fiction. Cassandra holds a Bachelor's Degree in English from Thomas Edison State University.</div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-62089711423694679652020-05-08T19:52:00.002-04:002020-05-08T19:52:54.594-04:00Grateful for... Four Years<h4 style="text-align: left;">Everything can be taken from a man but one thing: the last of human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way. ~~ Viktor E. Frankl</h4><div>Living today. Grateful for...many things. Two months ago, we all entered into a world of uncertainty. A world filled with a growing number of struggles that we are all facing. We are dealing with sadness and grief. We are experiencing loneliness as we have been social distancing from those around us in order to protect them and ourselves. We are disappointed by the numerous events that we planned that have been canceled, both in the last couple of months and upcoming as we approach summer. And this is only a small portion of the common struggles that we are facing. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirfxNq7tw0gUtLZgGk7WMh0YP8PZo7CEjP6dhZsIuJGjBKJJOdwc_85QUT9UiPknz5VF9IEw62YdkEDE-42GSmQqbI7dzsIvAa0ioELogieiXFlDmkUs1Hr3PV1lzpMEp44BIJaQdg8gA/" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2215" data-original-width="4032" height="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirfxNq7tw0gUtLZgGk7WMh0YP8PZo7CEjP6dhZsIuJGjBKJJOdwc_85QUT9UiPknz5VF9IEw62YdkEDE-42GSmQqbI7dzsIvAa0ioELogieiXFlDmkUs1Hr3PV1lzpMEp44BIJaQdg8gA/w400-h220/20200508_170016.jpg" width="400" /></a></div><div><br /></div><div>On April 3rd, I published a post <b>#stayhome</b>, I was angry, frustrated. All over social media, people were sharing their frustration and disappointment over events that had already been canceled. Events they had been looking forward to, either for themselves or loved ones. I was angry. Events. Canceled. Not Lives. Since then I have realized, their frustration and disappointment are grief. Grief comes in all shapes and sizes. Grief over small things. Grief over large things. Grief over canceled events. Grief over control.</div><h4 style="text-align: left;">Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom. ~~Viktor E. Frankl</h4>Grateful. Warmly or deeply appreciative of kindness or benefits received; thankful. Expressing or actuated by gratitude. Pleasing to the mind or senses; agreeable or welcome; refreshing. <br /><br />Today, I am grateful for the rain. Today, I am grateful for each and every moment to live, yesterday, today and tomorrow. Today, I am grateful for my superheroes. Today, I am grateful for Brian, Becca, and Ian ז״ל.<div><br /><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK5RMLFyOvzKfUH8NngRchyphenhyphenhwOw7seMPpEPY3_fLQPaXN6qxOzJvsv-gr_ifj5DJMqE8GSOSvUgQR9lotzf_yHpnwRMvuJ_jX-WgVEpYGMVObtwQZ1s_kl7zaKwmiOZcaJehyphenhyphenRk_N_XwU/" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1037" data-original-width="1844" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK5RMLFyOvzKfUH8NngRchyphenhyphenhwOw7seMPpEPY3_fLQPaXN6qxOzJvsv-gr_ifj5DJMqE8GSOSvUgQR9lotzf_yHpnwRMvuJ_jX-WgVEpYGMVObtwQZ1s_kl7zaKwmiOZcaJehyphenhyphenRk_N_XwU/w400-h225/UA+edit-731.jpg" width="400" /></a></div><div><br /></div><div>Four years ago. May 8, 2016. A day we dreamed of. A day, many times, we didn't know how we would celebrate. And celebration it was and for that I am grateful. It is a day that we will forever hold in our hearts, as no one can take away what is in our hearts. Today, I am grateful; grateful for each and every day.</div></div></div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-17269909935657611142020-04-03T21:42:00.001-04:002020-04-03T21:42:28.301-04:00#stayhome<div>
How many times have you seen a post similar to this on social media over the last three weeks:</div><div><br />
<div style="text-align: center;">
Social Distancing. Social Responsibility. </div>
<div style="text-align: center;">
Social responsibility means staying at home and away from groups.</div>
<div style="text-align: center;">
It means we as a society have a responsibility to protect those who are vulnerable to the virus. </div>
<div style="text-align: center;">
The federal government is urging older people and those with serious underlying health conditions --like lung or heart conditions or a weakened immune system -- to "stay home and away from other people" because data shows that these groups are most vulnerable to developing a severe form of COVID-19. </div>
<div style="text-align: center;">
The virus can be transmitted between people who are in close contact with each other -- about a 6-foot radius.</div>
<div style="text-align: center;">
However, it is not only the government's burden to bear. It is time for us, as citizens of this earth, to take action and do our part in fighting.</div>
<div style="text-align: center;">
It means that we protect our friends and family by not going to see them so that we don't unknowingly infect them.</div>
<div style="text-align: center;">
That means don't send your kids out to lunch with each other.</div>
<div style="text-align: center;">
That means don't host play dates at your house.</div>
<div style="text-align: center;">
That means use technology instead.</div>
<div style="text-align: center;">
"But I'm not sick!"</div>
<div style="text-align: center;">
And we want to keep it that way!</div>
<h1 style="text-align: center;">
#stayhome</h1>
<div style="text-align: left;">
I've re-written this post, in my head as well as in the blog, more times than I can count. So here I am, yet again trying to find the words to finish it. Nights have become hard again, shutting my eyes, my mind starts to wander, thinking - not a good thing. Taking me back, to where to when; before Ian passed away to when Ian was alive. My emotions have been all over the place. My mind usually goes non-stop; thinking about home, work, kids, summer, to all the things I want/need to do; going non-stop. The ups and downs come and go, sometimes situational, sometimes just a part of me being me.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Social distancing, anxiety-driven, isolation, fear of getting an illness and passing it along to someone you love and would do anything for. Feeling ok, not being sick, yet still being a carrier and <span style="text-align: center;">unknowingly infecting some</span>one who is immunocompromised. Someone who has an underlying condition. Differently. The ramifications aren't the same now as they were before, when, before Ian passed away when Ian was alive; but the ramifications could be just the same for others. It doesn't mean we don't feel it. It doesn't mean we don't understand. It doesn't mean we don't wonder It doesn't mean we just don't. We've been there and done it and would do it again...wait we are.</div>
</div>
<div>
<h3 style="text-align: center;">
<i>Look at the hand you are dealt and be creative. Make your own reality. Make the best of a bad situation.</i></h3>
</div>
<div>
Isolation. Washing hands. Cover your mouth and nose with a tissue when you sneeze or cough or use the inside of your elbow. Avoid touching your eyes, nose, and mouth. Avoid close contact with others who are sick. Stay home if you are sick. I could go on. Not new to us. All we did before, when, before Ian passed away when Ian was alive; all in order to protect Ian and keep him healthy and alive. Same yet different. </div><div><i style="text-align: center;"> </i><br />Lately, I have been staying off of social media. Only logging onto Facebook to get updates on COVID-19, new executive orders, updates from the Maryland State Department of Education, the Board of Education of Baltimore County and Franklin High School. COVID-19 sucks. It's scary. It's frustrating. It's not fair. The unknown. It's not what was supposed to happen. Everyone has worked so hard and looked forward to so much; canceled events, school closures and disruption of life as we know it. These losses will change all of us. No one is exempt. The intangibles losses. Missed milestones - proms, graduations, weddings, hanging out with friends, jobs, and so much more. I am not trying to downplay the situation or emotions and feelings. It is unfair. The feelings of loss, dread, anger, sadness, shock, weep, pit in your stomach, or loneliness. And where these feelings are, there is grief. Uncertainty. The feelings should be embraced. The loss of dreams and futures imagined - the loss of things hoped for and for feelings anticipated. It's the loss of those wispy, hard to get your hands around yet real beliefs about the metrics of the world. The grief attached to these things are real. </div><div>Perspective. </div><div><b>Denial - </b><i>This virus won't affect us.</i></div><div><i></i><b>Anger - </b><i>You're making me stay home and taking away my activities.</i></div><div><b>Bargaining - </b><i>Okay, if I social distance for two weeks everything will be better, right? </i></div><div><b>Sadness - </b><i>I don't know when this will end. </i></div><div><b>Acceptance - </b><i>This is happening; I have to figure out how to proceed. </i></div><div>My heart hurts. It hurts for all those intangible losses. It hurts for the impact and everyone who is non-exempt. </div><div><h1 style="text-align: center;">#stayhome</h1></div><div style="text-align: center;">Alive. Remember. Breath. Remember. Tomorrow. Remember. </div><div style="text-align: left;"><div style="text-align: left;">All the things you get to do while social distancing. All the things you are doing while being socially responsible. All the things - alive, remember, breath, remember, tomorrow, remember - you get to see and experience while #staythefuckhome. Yes, the experiences will be altered because of COVID-19 and for that reason be sad, frustrated, angry, but remember - Alive. Breath. Tomorrow. Stay at home to protect those who are vulnerable to the virus. Social distancing. Social responsibility. Perhaps my perspective is not different from yours but perhaps, just perhaps, my perspective is the same as yours. Perspective comes from experience, so yes my perspective comes from our journey. </div><div style="text-align: left;">VRK1. </div><div style="text-align: left;">PCH1A. </div><div style="text-align: left;">Rare disease. </div><div style="text-align: left;">Ian Alexander Scher, of blessed memory.</div><div style="text-align: left;"><h1 style="text-align: center;">#stayhome</h1><div>Protect your friends and family. Protect their friends and family. Protect those with serious underlying health conditions. When talking and sharing about those canceled events, school closures and disruption of life - remember - you get to be alive, breathe and see the next day. Perhaps, just perhaps my perspective is tainted because of our precious little boy, perhaps not, maybe it would be the same regardless. </div></div></div><div><span style="background-color: yellow;"><div style="text-align: left;"><div style="text-align: left;"><div><br /></div></div><div style="text-align: left;">Last week one of Becca's friends lost her great-grandmother. With Becca's permission, I am paraphrasing what she shared with her friend. "...Ian was like your great-grandmother for me. He made me feel comfortable in any situation..." "...he was my everything." Don't you want to protect your everything, the person who makes you feel comfortable in any situation?</div><div style="text-align: left;"><br /></div><div style="text-align: left;">How about we all learn to be more flexible, to be more patient and become stronger. How about we all realize that sometimes sacrificing things that are important to us are what needs to be done. How about we realize that all the hardships we encounter help us to become stronger individuals.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">So continue to:</div><div style="text-align: left;"><h1 style="text-align: center;">#stayhome</h1></div></div></span></div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-51550127966703952842020-03-14T12:07:00.002-04:002020-03-14T12:07:34.160-04:00Rare Disease Day 2020 - Parents, Patients, Doctors<div class="" style="clear: both; text-align: center;">
<div style="text-align: left;">
<span style="text-align: justify;"></span><br />
<span style="text-align: justify;"><br /></span>
<span style="text-align: justify;"></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitqTzW-LuAU8XXy4doco0RjS42e1Sc0mJ2A-VOCQt5d35uG5OIjE2wjTDwpoAxuJLGNXfxNWqN0z3pKQGdaZwl12CiBu2nHyWtkbORK6naxZBg2StehvOVJslheppiqZ0vKvuW7hfl_vk/s1600/Screenshot_20200222-204601_Facebook.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="316" data-original-width="660" height="153" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitqTzW-LuAU8XXy4doco0RjS42e1Sc0mJ2A-VOCQt5d35uG5OIjE2wjTDwpoAxuJLGNXfxNWqN0z3pKQGdaZwl12CiBu2nHyWtkbORK6naxZBg2StehvOVJslheppiqZ0vKvuW7hfl_vk/s320/Screenshot_20200222-204601_Facebook.jpg" width="320" /></a><span style="text-align: justify;">"Back in the </span><span style="text-align: justify;">80s, there was no "Dr. Google" and the physician in the room was the oracle of all sagely wisdom and medical expertise -- </span><span style="text-align: justify;">even if the rare disease was something the had never seen before."</span><br />
<div>
<span style="text-align: justify;"><br /></span></div>
<br /></div>
</div>
<div style="text-align: right;">
<span style="color: red;"></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx8qyDjOTI5a3bwQ8VECwq5HcZq92a6pW3o4zckFqz4R8AoaYVVYRIdrQvmsFrBwHvcVFzFtUFiFH8iJYdNYLGia-balMuIxWObKpaAD1C7k4mCx3l2-Dv7ZLXqU1JRxZfBG27F09QtY8/s1600/Stephanie.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: black;"></span></a></div>
<div style="text-align: right;">
<div style="text-align: left;">
<br /><span style="color: red;"></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCkD9TIAirEtjbCbh30mSEEVrDIasPeVhyphenhyphenLAWkfQ7jz2e2oX8nBcQpXGK0W2l5OLfGJLYRYllsHKJEj0-5-Ah-yA9Fx8TiXPomjtS9wvY45BbvMp2YRJYKbvq5I8U6G8V87Z6ZZRnrQq4/s1600/bt2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCkD9TIAirEtjbCbh30mSEEVrDIasPeVhyphenhyphenLAWkfQ7jz2e2oX8nBcQpXGK0W2l5OLfGJLYRYllsHKJEj0-5-Ah-yA9Fx8TiXPomjtS9wvY45BbvMp2YRJYKbvq5I8U6G8V87Z6ZZRnrQq4/s320/bt2.jpg" width="320" /></a></div>
<span style="text-align: justify;">We are not back in the 80s, we are 30 years later. Is this still true? Just how are parents of a child with a rare disease treated? Are they listened to? How do physicians and medical staff view them? There were many times when Brian or I would have to "put our foot down" in order for something to or not to happen for Ian. We became the experts in the room...we knew Ian and PCH1A better than anyone.</span></div>
</div>
<div dir="auto">
<span style="text-align: justify;"><br /></span>
<div class="" style="clear: both;">
<div style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;">
Back in 2012, I was going to find out how to help my son. Little did I know that in doing so I was going to become the expert on the altercation of VRK1. I started by going to the one person who may have known something about it, the author of the published article from 2009, Dr. Ephrat Levy-Lahad. I remember everything about this conversation, from where I was to what I was doing to what I said to what she said.... This began my journey, our journey in becoming an expert, an expert on VRK1 and how it would, not could because we knew it would affect Ian and our lives. </div>
</div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="margin-left: 1em; margin-right: 1em;">
<img border="0" data-original-height="593" data-original-width="791" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUVBRIWAxSP_sejiH319WCo8PCRpeNDwBHYE5BMjgjkgbHE53S_T62ZWsxSCHTE4-ySYWk8Gels1923LkdZ70yq6ku7IGGjxEXytgc9_OGEKuYnV3eG_xTRTj2epYaFw5qAl49yRi6TjQ/s320/cac3.jpeg" width="320" /> </div>
<div style="margin-left: 1em; margin-right: 1em; text-align: left;">
<br /></div>
<div class="" style="clear: both; text-align: left;">
<span style="text-align: justify;">This is not an uncommon story in the world of rare diseases. Rare patients or the parents/caregiver often become experts on their disease when communicating with their general practitioners, or even medical experts who may have never treated their disease before.</span></div>
<div class="" style="clear: both; text-align: left;">
<span style="text-align: justify;"><br /></span></div>
<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVsRWDvore0qThNgPiVmRnW7ZjlzYw2oiKu_2NnJq5RvM18zKfUrcdyPPvLWSONAXGo56w_HmFwy7JNVgccYaoaoRHvqWAHoQv4vuA-piV6I2tD2PejIeBcVtVO2lFLnCZMWP3avr53dU/s1600/cac.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="593" data-original-width="446" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVsRWDvore0qThNgPiVmRnW7ZjlzYw2oiKu_2NnJq5RvM18zKfUrcdyPPvLWSONAXGo56w_HmFwy7JNVgccYaoaoRHvqWAHoQv4vuA-piV6I2tD2PejIeBcVtVO2lFLnCZMWP3avr53dU/s320/cac.jpeg" width="240" /></a><span style="text-align: justify;">No doubt a significant role-reversal has begun to occur, as rare patients bring valuable lived experiences to their doctor visits and the encounter between the informed patient and collaborative physician breaks tradition. Often patients come with experience not only about their disease but also knowledge of treatments that doctors are often unaware of. After all, with 7,000 rare diseases and new ones discovered each day, the doctor is sometimes running over countless learned facts in a brief, 20-minute consultation. So it behooves the doctor to seek patient input when faced with "things that don't make sense."</span></div>
<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWGJiHtMOkYJCmrHqDM2UehA3cfvw-xL396d8xb9OofPj1oajDrIX5D9AyeaG4cc5vQTjhG51BsaiNPvKEmRzudx-okI-YOz37XMBm7zPX4wmcM23rxQ76EG_vLyhMY869nbOj4J3ZCS8/s1600/goldsmith.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="593" data-original-width="791" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWGJiHtMOkYJCmrHqDM2UehA3cfvw-xL396d8xb9OofPj1oajDrIX5D9AyeaG4cc5vQTjhG51BsaiNPvKEmRzudx-okI-YOz37XMBm7zPX4wmcM23rxQ76EG_vLyhMY869nbOj4J3ZCS8/s320/goldsmith.jpeg" style="text-align: left;" width="320" /></a></div>
<br />
<span style="text-align: justify;">With absolutely no prior medical training, our efforts were met with rigid disapproval and consternation.</span><span style="text-align: justify;"> </span><span style="text-align: justify;">When Ian was first diagnosed in July 2012, there was one published article on VRK1, yes just one published article, and that article was published in </span><span style="text-align: justify;">2009. This article was the first to describe the same alteration Ian had in VRK1. It described </span><span style="text-align: justify;">2 young girls from an Ashkenazi Jewish family who had many of the same neurological difficulties Ian had. Now there are more cases, yet our information about this gene and its specific role in neuronal integrity remains very limited. </span><br />
<span style="text-align: justify;"><br /></span>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ua3G_-A62uUKPy3YbwMhTTGqbHAfdAxqfd_4Oddl8BDptciIdvVJYvB7EtJ61SQB13jijzQM6lN3OGLGT99Qk5s8mASFyGp8FQHKpBQk5jyTwv4rFXfhEusOWsLync-IRF0FhAS3Eco/s1600/living+legacy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ua3G_-A62uUKPy3YbwMhTTGqbHAfdAxqfd_4Oddl8BDptciIdvVJYvB7EtJ61SQB13jijzQM6lN3OGLGT99Qk5s8mASFyGp8FQHKpBQk5jyTwv4rFXfhEusOWsLync-IRF0FhAS3Eco/s320/living+legacy.jpg" width="320" /></a><span style="text-align: justify;">Over the years, I have realized that many patients with serious illnesses prefer the physician to dominate the decision processes and provide the information needed. However, in rare diseases, due to the low prevalence and lack of expertise, the patient and/or parent and caregiver is forced to become knowledgeable about their own disease. It forces the experts in the room to come to a shared understanding that this is a zebra we are dealing with and not a horse. And yes, even Ian became an expert. He began to know what he needed and when, he knew which medicine he was to get and when, over time, he was able to advocate for himself, letting us or his nurses know when he wasn't feeling well and needed his treatments. </span></div>
<div style="text-align: justify;">
<div style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;">
</div>
<div style="text-align: left;">
<br />
</div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBbc5TL3hMuVCS6hDlkJQPW7zT6AxzS-pdG09o7Gh3_AZ9vim91N17oE-WVMrpFfP67qO1x8aifnwl1lP9sxxmSai9qzzXQ3z6aUrq3XW3KiwXeleUdjF5G_7cHkOvau7Ddi4WlOYOSw/s1600/rare2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="502" data-original-width="960" height="167" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBbc5TL3hMuVCS6hDlkJQPW7zT6AxzS-pdG09o7Gh3_AZ9vim91N17oE-WVMrpFfP67qO1x8aifnwl1lP9sxxmSai9qzzXQ3z6aUrq3XW3KiwXeleUdjF5G_7cHkOvau7Ddi4WlOYOSw/s320/rare2.jpg" style="text-align: left;" width="320" /></a>Some takeaways from an adult who was once "that child" to the parents of a child with a rare disease and from an adult who was not "that child" to the parents of a child with a rare disease.</div>
<br />
<b><br /></b>
<b>Doctors are not Gods</b><br />
<div class="" style="clear: both; text-align: left;">
While knowledge and expertise are to be respected, doctors are human beings and can make mistakes. A parent's experience with their child, in most cases, trumps textbook knowledge and classroom instruction. The doctor is probably as lost as you are, while they deliver the news of a diagnosis like a death sentence of all that could be happy and beautiful for your child, know there are options, even if the person who gave them their diagnosis isn't aware of all of them. The path you choose for your child doesn't have to be one of desperation, loss, and fear. Parents don't have to believe the doctors who tell them their sickly child would not amount to much, may never earn high praise from the ones who mean the world to them.</div>
<div class="separator" style="clear: both; text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVoMLJeEeHctR0I9HJngr-J3Xq_vRu9nZk8q7sA9gO5YdDbhAfwR6xVW_KvkrjEoGwijfFeQs0BLEpxQm7vHhotPmi8tXBEX9okwHgZ5HgQ5itvEDBn63d92ahGvgTK0TXv691QcFO8pA/s1600/becca.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: justify;"><img border="0" data-original-height="240" data-original-width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVoMLJeEeHctR0I9HJngr-J3Xq_vRu9nZk8q7sA9gO5YdDbhAfwR6xVW_KvkrjEoGwijfFeQs0BLEpxQm7vHhotPmi8tXBEX9okwHgZ5HgQ5itvEDBn63d92ahGvgTK0TXv691QcFO8pA/s1600/becca.jpeg" /></a></div>
<br style="text-align: start;" />
<div class="separator" style="clear: both; text-align: left;">
<b style="text-align: justify;">Letting Go</b></div>
<div style="text-align: justify;">
<div style="text-align: left;">
Letting go of fear and anxiety about a future you thought of for your child helps you live in the now. Do parents worry about the future of their children? Sure. All the time. Do they show it? Yes and no! Help them to find balance in their world. In a strange way it can free them from unnecessary stress, and equip them for the bigger battles ahead.</div>
</div>
<div style="text-align: justify;">
<div style="text-align: left;">
<br /></div>
</div>
<div style="text-align: justify;">
<div style="text-align: left;">
<div style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;">
<img border="0" data-original-height="628" data-original-width="1200" height="167" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQkIfbTinDlGVhi5yiVhc0_D0WKQZRbxd-FQHitZf0-ZFe8XLhlaegsfvKCeujxnwbxyl4WgnhdfV1EB4ZrDrQ4ccMt05tnWblVsSm6RhActQTeGC9JGMr8FvchXzt6XXBVgtENzU_wC4/s320/rare3.jpg" width="320" /></div>
<b>The Power to Choose</b></div>
</div>
<div style="text-align: justify;">
<div style="text-align: left;">
<i>Someone once said, "Between stimulus and response, there is a space. In that space is our power to choose our response. And in our response lies our growth and our freedom." </i>Fear limits you and your vision. The solution may be just around the corner, but fear keeps you rooted from taking the next step. The problem doesn't have a solution...yet. The journey is valuable, but believing in your child's talents, abilities and worth is equally valuable.</div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<b>Not Winning on Your Terms</b></div>
Being flexible is critical when you are advocating for change. As a parent of a child with a rare disease, you will encounter many different people who don't understand your world and perspectives that often throw your world into chaos. Here's where you need to take a step back and breathe. You have to realize change won't happen if you appear too rigid or fixed in your views. Working with different types of people and situations -- even when confronting different belief systems and ideologies -- teaches you as well as your child to see multiple perspectives, understanding when to compromise and when to be open-minded.<br />
<img border="0" data-original-height="334" data-original-width="1152" height="92" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitCFr0HDnj-43QKLrXY1uycAbDbDywFOqeJoY7gexNcxDyMFz3pJw_w2x1q7feuL2hECYbrGqDT2KPXBgkK19MdkH3ZqCNcZfZRChENMRhNWVQGxS90rm1qaTRy4xCE4pTmWHt3HM3G3Q/s320/rare.jpg" style="text-align: left;" width="320" /><br />
<br />
<div style="text-align: justify;">
<div style="text-align: left;">
<b>Positive Advocacy</b></div>
</div>
<div style="text-align: justify;">
<div style="text-align: left;">
Self-advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem-solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination. Teach them through communication -- "I believe in you and I know you can succeed." Show them time and again that you are there for them, but the decisions are for them to make.</div>
</div>
<div style="text-align: justify;">
<div style="text-align: left;">
As a parent, you can empower your child with a rare disease to walk down a bright path. You can transform fear into freedom when you stop worrying about the "what ifs' and remember to never give up hope. Everyone has their own way of supporting their child with a rare disease.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlVvW987gAIwKIzzUpVvmNqQv58SQ8apoESjdNE0JtRetZicn_ED09XRO3wuqSywOxoi7in9hgoC912RtDRge-hBrmfQrec4YhnkY78t5aJsGRaZgK1xZX6G9L7uhJ3fD83N7ZZgzHpcc/s1600/gilat.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlVvW987gAIwKIzzUpVvmNqQv58SQ8apoESjdNE0JtRetZicn_ED09XRO3wuqSywOxoi7in9hgoC912RtDRge-hBrmfQrec4YhnkY78t5aJsGRaZgK1xZX6G9L7uhJ3fD83N7ZZgzHpcc/s320/gilat.jpg" width="320" /></a></div>
</div>
<div style="text-align: justify;">
<div style="text-align: left;">
<br /></div>
</div>
<div style="text-align: justify;">
<div style="text-align: left;">
The world of rare is complex.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Thank you to our village. You have been there for years supporting us in our journey as it has and is constantly changing.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwDCgH9w2QOrus3ZBkRNlSDYmC65hGRERbXQBFZ2OjzuL3Gng4yR7icDc7VoMWGfo7XdURn9uEGUcRoa4ZGjzUAPbOgNKWlO7w_1XBSIwHqgM5ETorkiriO60uSBuoqUcsrrst_u-6wsM/s1600/rare+5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="427" data-original-width="1280" height="106" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwDCgH9w2QOrus3ZBkRNlSDYmC65hGRERbXQBFZ2OjzuL3Gng4yR7icDc7VoMWGfo7XdURn9uEGUcRoa4ZGjzUAPbOgNKWlO7w_1XBSIwHqgM5ETorkiriO60uSBuoqUcsrrst_u-6wsM/s320/rare+5.jpg" width="320" /></a></div>
</div>
</div>
</div>
<div>
<div data-v-9a3d11fe="" style="background-color: white; box-sizing: border-box; color: #444444; font-family: Lato, sans-serif; font-size: 16px; margin: 0px; padding: 0px;">
<div class="author-byline short desktop" data-v-9a3d11fe="" role="author" style="-webkit-box-direction: normal; -webkit-box-orient: horizontal; -webkit-box-pack: center; box-sizing: border-box; display: flex; flex-direction: row; justify-content: left; margin: 0px; max-height: 92px; overflow: hidden; padding: 0px;">
</div>
</div>
</div>
</div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-54256286991067365252020-02-27T15:00:00.000-05:002020-02-27T15:00:06.753-05:00White Coat Ceremony - Franklin High School Class of 2021 Project Lead the Way Biomedical Program <span style="font-family: inherit;">Thursday, January 9, 2020, at 5:30 PM, the auditorium at Franklin High School, began to fill with the Juniors from the Project Lead the Way Biomedical Program for their White Coat Ceremony.</span><br />
<div>
<br /></div>
<div>
<i>All things take hard work. Obstacles to overcome.</i></div>
<div>
<br />
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie-WIrKbawuJEbJUpS9agrjgKp5N-vnDFY43aAZqPdOi39PqmOUZaRS3Xg49_oo_fpbYCj8kGZPYic1eIVy8_yNBtdNiuOHNCHMXtYuqYGnlDPxd-ablEaHC6Pxwtq5ozkclvtc7imZ5I/s1600/20200109_175528.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie-WIrKbawuJEbJUpS9agrjgKp5N-vnDFY43aAZqPdOi39PqmOUZaRS3Xg49_oo_fpbYCj8kGZPYic1eIVy8_yNBtdNiuOHNCHMXtYuqYGnlDPxd-ablEaHC6Pxwtq5ozkclvtc7imZ5I/s320/20200109_175528.jpg" width="320" /></a></div>
<span style="font-size: 18.72px; font-weight: 700;">"The good physician knows his patient through and through, and his knowledge is bought dearly. Time, sympathy, and understanding must be lavishly dispensed, but the reward is to be found in that personal bond which forms the greatest satisfaction of the practice of medicine. One of the essential qualities of the clinician is his interest in humanity, for the secret of the care of the patient is in caring for the patient."</span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgDgBbli9FEkJCIy-T9Q1b4Hr-6WGzHCGLkI1hpFpWTnYyy3YkE6S1zkAcUjIxqvA_K4iAO1OX2JBhz0Ee7GqbUbUOVUuoYPSHemv_VU_749tArtdC8l8_eL5R2TQ0P7SOPMZXjRkdL1Y/s1600/20200110_065950.jpg" imageanchor="1" style="clear: left; float: left; font-family: "google sans"; font-size: medium; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgDgBbli9FEkJCIy-T9Q1b4Hr-6WGzHCGLkI1hpFpWTnYyy3YkE6S1zkAcUjIxqvA_K4iAO1OX2JBhz0Ee7GqbUbUOVUuoYPSHemv_VU_749tArtdC8l8_eL5R2TQ0P7SOPMZXjRkdL1Y/s200/20200110_065950.jpg" width="150" /></a></div>
<span style="font-size: 18.72px; font-weight: 700;"><br /></span></div>
<div>
<span style="font-family: inherit;">You could see the excitement of the students and the teachers. The White Coat, they begin talking about it on the first day of Freshman year, when they start the program. It is a right of passage. They are 3/4 through the program. The night has finally come for them...the Franklin High School Project Lead the Way Biomedical Class of 2021 White Coat Ceremony.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Just what is the White Coat Ceremony all about? I came across </span><span style="font-family: inherit;">"The Care of the Patient" by Francis Peabody.</span></div>
<div>
<br />
<div>
<span style="font-family: inherit;"><b>For the medical student...".... For he only has time, to sit down by the bedside and learn all about the patient assigned to him, to get to know him as a human being, perhaps to learn that he is not someone who 'has nothing the matter with him' but whose symptoms, so-called functional, emanate from difficult circumstances occurring in this individual's life. ...He needs to know his patient through and through, for, as has been quoted so many times in what soon will be a century, 'the secret of the care of the patient is in caring for the patient.'"</b></span><br />
<a href="https://1pvx212tsjxq5z6yc4a59yw8-wpengine.netdna-ssl.com/images/All_journal_images/2015_Briefs/The_Doctor_Luke_Fildes.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="The Doctor" border="0" height="215" src="https://1pvx212tsjxq5z6yc4a59yw8-wpengine.netdna-ssl.com/images/All_journal_images/2015_Briefs/The_Doctor_Luke_Fildes.jpg" style="background-color: white; font-family: "google sans";" width="320" /></a><span style="font-family: inherit;">This sounds like life. Regardless of the field. Regardless of the occupation. Regardless of the situation. Shouldn't every person take the time to get to know the other person as a human being? Don't we all deserve to be treated in the manor Francis Peabody describes in </span>"The Care of the Patient"<span style="font-family: inherit;">!</span><br />
<br />
<span style="font-family: inherit;">Francis Peabody also described medicine as an art, <b>"</b></span><b>The practice of medicine in its broadest sense includes the whole relationship of the physician with his patient." </b><span style="font-family: inherit;">Stating that, "</span><b style="font-family: inherit;">Good practice presupposes an understanding of the sciences which contribute to the structure of modern medicine, but it is obvious that sound professional training should include much broader equipment."</b><br />
<span style="font-family: inherit;">An art? Customer service? Much broader equipment...that sounds like life experience to me. It sounds like learning should not just happen in the classroom. Learning should happen from human to human from situation to situation.</span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM6Wq36I8V4cobKWebT_a6ujZmLNy7zcO13uq6aoGgsO_XElnTfNd0JHEBQX9cVzzHA0CRy8I-mvBOX74pYuAWIhgeO8Jla7V9HSVrpF3GDMnrT03AL7wchaqIDyrCS_n1NGT8y8PpS_E/s1600/2567.jpeg" imageanchor="1" style="clear: right; font-family: "google sans"; font-size: medium; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" data-original-height="1008" data-original-width="756" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM6Wq36I8V4cobKWebT_a6ujZmLNy7zcO13uq6aoGgsO_XElnTfNd0JHEBQX9cVzzHA0CRy8I-mvBOX74pYuAWIhgeO8Jla7V9HSVrpF3GDMnrT03AL7wchaqIDyrCS_n1NGT8y8PpS_E/s320/2567.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Presenting "Dr." Becca Scher</td></tr>
</tbody></table>
<span style="font-family: inherit;"></span><br /><span style="font-family: inherit;"></span>
<span style="font-family: inherit;"><b>Treatment of disease = impersonal</b></span><br />
<span style="font-family: inherit;"><b>Care of a patient = personal</b></span><br />
<b>Relationship between physician and patient = strongly emphasized</b><br />
<b>Diagnosis and treatment = directly dependent on the relationship between physician and patient </b><br />
<b>Failure of a young physician to establish relationship = ineffectiveness in the care of patients</b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkBvR099XQqIFcc3FGt97p2G6W5HRMrDG5lIouQ20UcYcrpx7oh8kycL5zrDu_as7_ZDKkMiiIwX2VHrqRT9_3bgkKevWFZ9f_Eg44mrOzyDd_Oufub9sUlWigckzZDrOmBiNvpRlzUaQ/s1600/2564.jpeg" imageanchor="1" style="clear: left; float: left; font-family: "google sans"; font-size: medium; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkBvR099XQqIFcc3FGt97p2G6W5HRMrDG5lIouQ20UcYcrpx7oh8kycL5zrDu_as7_ZDKkMiiIwX2VHrqRT9_3bgkKevWFZ9f_Eg44mrOzyDd_Oufub9sUlWigckzZDrOmBiNvpRlzUaQ/s320/2564.jpeg" style="cursor: move;" width="240" /></a><b></b><br /><b></b>
All of this sounds like life...relationships...listening...understanding humans and the emotions that go along with them. Really listening to what they are saying, the underlying words and meaning.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHigCVFl4mqr2qKtkFHlMqZV2oFsaSZtNLLMMNGuAZXulG73C0pE93xy8EOiftHttV6XmWbRnCfD62S2-R2nz0o0nMS-6hn4O7quw878zmrHs6f_9XnIhDUDyLA4GXcxgPM7kcVFwdSqU/s1600/FB_IMG_1578623850963.jpg" imageanchor="1" style="font-family: "google sans"; font-size: medium; margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="326" data-original-width="800" height="162" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHigCVFl4mqr2qKtkFHlMqZV2oFsaSZtNLLMMNGuAZXulG73C0pE93xy8EOiftHttV6XmWbRnCfD62S2-R2nz0o0nMS-6hn4O7quw878zmrHs6f_9XnIhDUDyLA4GXcxgPM7kcVFwdSqU/s400/FB_IMG_1578623850963.jpg" width="400" /></a></div>
Now, I am sure this is not what the kids took away from the ceremony, however, a physician was the honorary speaker and she did speak about hard work and working hard, compassion, listening to what others are saying...<br />
<br />
...pretty much what was said in "The Care of the Patient" by Francis Peabody.</div>
</div>
<div>
<article class="post-274 page type-page status-publish has-post-thumbnail hentry program_category-signature-programs" id="post-274" style="box-sizing: border-box;"><div class="entry-content " style="box-sizing: border-box; line-height: 1.5; margin-bottom: 40px;">
</div>
</article></div>
</div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-3215620842894147382020-02-14T20:56:00.001-05:002020-02-14T20:56:45.462-05:00It Is Just Another Day...For me...My loves. My hearts. My everythings. Valentine's Day. It's just another day, a hallmark day, a commercial day.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisoi2EvnM_Ughq7inhkqs0pRaqP7qhNEvWLliKd7lAGMH6Jv_OgEWqrtYV1aSbCjJKxB_wX103RTwCi07N3hmJbkf0pb8kxkuo-n0R0P9m6jtmDFL64M3pQs3DKGFv8WniYB3e69Vcdck/s1600/Screenshot_20191228-203951_Files.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" data-original-height="1459" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisoi2EvnM_Ughq7inhkqs0pRaqP7qhNEvWLliKd7lAGMH6Jv_OgEWqrtYV1aSbCjJKxB_wX103RTwCi07N3hmJbkf0pb8kxkuo-n0R0P9m6jtmDFL64M3pQs3DKGFv8WniYB3e69Vcdck/s320/Screenshot_20191228-203951_Files.jpg" width="236" /></a></div>
<br />
For me...<br />
<br />
It is every day.<br />
<br />
My loves,<br />
<br />
My hearts.<br />
<br />
My everythings.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN7eongsoYrwHvKvKUNKDtznOzQ9Li5EE8vMM4UEPDzULTGkWxd0k9YCIR6wsEcpOm838c_m22imcDh7oG1BWIrtXCtvGstPcWkZKA5bV5t3k7kmxXKQ1l61_Hxd9QUvgQKzhI5j1sg34/s1600/Screenshot_20191228-204015_Files.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1343" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN7eongsoYrwHvKvKUNKDtznOzQ9Li5EE8vMM4UEPDzULTGkWxd0k9YCIR6wsEcpOm838c_m22imcDh7oG1BWIrtXCtvGstPcWkZKA5bV5t3k7kmxXKQ1l61_Hxd9QUvgQKzhI5j1sg34/s320/Screenshot_20191228-204015_Files.jpg" width="257" /></a>My heart is complete yet broken.<br />
<br />
Always will be.<br />
<br />
Treasure, Dream, Live.<br />
<br />
Yesterday.<br />
<br />
Tomorrow.<br />
<br />
Today.<br />
<br />
Cherish the moments.<br />
<br />
Show your tears, cry.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqimg4RH0wMk8EyVkBL21FnqqoBY8rS-UtzbPgAdSCZTSdxmUX9cUt5xBM3LsjBA6hwwfu1KtwA8DUDg8HaF2x0esguxF3aIPFmpw-fDLdOhtcrCf8EhPm2e9C1jHmNDi0US8TAvsYjE0/s1600/33641.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="756" data-original-width="1008" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqimg4RH0wMk8EyVkBL21FnqqoBY8rS-UtzbPgAdSCZTSdxmUX9cUt5xBM3LsjBA6hwwfu1KtwA8DUDg8HaF2x0esguxF3aIPFmpw-fDLdOhtcrCf8EhPm2e9C1jHmNDi0US8TAvsYjE0/s320/33641.jpeg" width="320" /></a>Grief.<br />
<br />
Always in our lives.<br />
<br />
Live in the moment.<br />
<br />
Laugh often.<br />
<br />
Hug tight.<br />
<br />
Say I love you. <span style="text-align: center;"> </span><br />
<span style="text-align: center;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjObp7wwhyphenhyphenkVObflo3s91Tbh3sk20uzvJzd8u7DcVhOR9c3ZJnDt3qvn8mGxBQpebJAE13aQodNdlsmbAGcUOLJJWTn5S6Qg9HLIsXlWiMOMVdbnB0PVi6twwQJwdqQt0Z043gJcR4o3MM/s1600/20200121_160035.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjObp7wwhyphenhyphenkVObflo3s91Tbh3sk20uzvJzd8u7DcVhOR9c3ZJnDt3qvn8mGxBQpebJAE13aQodNdlsmbAGcUOLJJWTn5S6Qg9HLIsXlWiMOMVdbnB0PVi6twwQJwdqQt0Z043gJcR4o3MM/s320/20200121_160035.jpg" width="180" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-90451194773736425332020-01-01T20:29:00.000-05:002020-01-01T20:29:08.324-05:00A Letter To My Children As We Enter A New Decade<div>
Dear Becca and Ian <u><i>zt"l,</i></u></div>
<div>
<br /></div>
<div>
As we leave one decade and enter into the next, I have so much to share with both of you. How proud we are of you, all of your accomplishments with all the highs, lows, and challenges you each faced together and individually.</div>
<div>
<br />
The 2010's...what a decade it has been. Full of unknowns. Ups and downs. Highs and lows. Joys and sorrows. Cries and laughs. As the days turned to weeks, weeks turned to months and months turned into each new year; we had no idea what lied in front of us. No matter where the decade took us, no matter what was in front of us...you both looked each day, week, month and year in the "eye" and took them on. All of us together had no idea where we were going but we were going to find out and leave no stone unturned. The decade started off searching for answers, not knowing the answers would forever change us.<br />
<br />
<div>
So carefree. So full of life. Both of you were. </div>
</div>
<div>
<br />
A mutation of the VRK1 gene. Pontocerebellar Hypoplasia Type 1A. Pontocerebellar Hypoplasia with Spinal Muscular Atrophy. Letters and words which were foreign to us; in a matter of seconds became so familiar. We had no idea that two simple letters being out of order would change our lives. Hearing, that before we entered into the 2020 decade, our family of four would become three of us on earth and one of us in heaven -- the likelihood Ian z<i>t"l</i> would see his teenage years -- unlikely. To say this reality was devastating is an understatement.</div>
<div>
<div>
<br /></div>
<div>
PCH1A -- finding a diagnosis didn’t change anything for us, for Ian z<i>t"l</i>, with or without a diagnosis his prognosis was the same...Ian z<i>t"l, </i>our sweet boy, you were still going to pass away, way to early. In the early years of the decade, one of my fears was not knowing why, not knowing why, not knowing the what, not knowing how he would pass away...Becca and Ian z<i>t"l</i>, hearing the words " mutation of the VRK1 gene", "Pontocerebellar Hypoplasia Type 1A", " Pontocerebellar Hypoplasia with Spinal Muscular Atrophy" was a blessing. Those words took a weight off my shoulders, in a very strange way was a blessing. My heart hurt but in a different way, the pain in my heart was there and still sharp, that too was in a different way. I can not explain, but I was relieved to hear those letters and words. </div>
<br />
Becca and Ian z<i>t"l</i>.</div>
<div>
Ian z<i>t"l </i>and Becca.</div>
<div>
<br /></div>
<div>
Separated at some point. The loss of a sibling is one kind but when that sibling is a twin, that loss is completely different. Becca and Ian z<i>t"l,</i> you didn't know what it was like to be one, you only knew what it was like to be two, a pair. You would have to learn how to be one. One on earth and the other in heaven. This was not in your make-up. Somehow, someway, and much sooner than we thought it would happen.</div>
<div>
<br /></div>
<div>
My wants and worries were constant. My wants, for both of you, was to have everything. For all your dreams to come true. My worries and wants were different for you, Ian z<i>t"l</i>, and for you, Becca. We, Mommy and Daddy, had to find a way to "come to terms" with the prognosis; "come to terms" with the reality. How do you do that? According to the research that was available in 2012, most of those with PCH do not live past childhood; especially those with PCH1A. "Come to terms", those words don't seem to be right. How do you "come to terms" with the fact that one of your children has a terminal illness? How do you "come to terms" with the fact that one of your children will have to say goodbye to their sibling, not just any sibling but their twin.</div>
<div>
<br /></div>
<div>
Treasure. Dream. Live. Worry. Joy. Laughter. Somehow we found a way to do all of that plus more.</div>
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVz-Zu1YmNCdfJt67vCJ2N8VrEFZNazYThrCtkBcZxCzGvDc2NSq318IQdJcTSM7G9pQxjKUYC7nZdO0s91re9rQP16jQYnC_4Kx4iIASxP7GUckXHNmv_9GkOGKLn-v6fVT4XJSzKJqU/s1600/1577629072228839-0.png" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVz-Zu1YmNCdfJt67vCJ2N8VrEFZNazYThrCtkBcZxCzGvDc2NSq318IQdJcTSM7G9pQxjKUYC7nZdO0s91re9rQP16jQYnC_4Kx4iIASxP7GUckXHNmv_9GkOGKLn-v6fVT4XJSzKJqU/s400/1577629072228839-0.png" width="293" /></a></div>
<div>
Becca -- Over the past 10 years, you have gone from 6 to 16. You have grown in ways no child, preteen or teenager should have to. You have seen and experienced things most your age haven't. In some ways, you grew up too fast and in other ways, you lost a part of yourself, a part of your childhood. Medical words and treatments became part of your everyday vocabulary. Your life, as did all of ours, centered on the medical needs of Ian <i>zt"l, </i>as much as we tried for things to remain "normal." For you to have a "normal" childhood and for us to be able to give that to you.<br />
<br />
I still remember the day you asked us to show you how to give Ian <i>zt'l </i>his medicine through his G-tube, so you could care for him. Holding back the tears, we showed you exactly what you asked. My mind was yelling at God for having to do this, while my heart was filled with more love than I could imagine because of your beautiful heart and love you had for Ian <i>zl"t. </i>I wanted to find a way to make it better for you. I knew you were in pain, I couldn't make it go away.</div>
<div>
<br /></div>
<div>
Becca, you took on each day with spring in your step. Your sping changed over the decade as you began to realize and understand just how your life would change. You found your safe place in your room and didn’t like to leave afraid you wouldn't be home when...the time came. Eventually, you overcame that fear and found safety in other places. Camp Louise. The Barn. Girl Scout events and sisters. You observed everything. You observe everything, take it in, all your choices and then make your decisions. As you have told me many times, "Don't ever mistake my silence for ignorance, my calmness for acceptance or my kindness for weakness". One thing has always been for sure….if anyone messed with your “little” brother, they had his “big” sister to deal with. Oh yes, we know, and so does he...you are older, just by a minute...and you, my dear, Becca, are never, ever going to let anyone forget it, especially Ian <i>zt"l</i>.<br />
<br />
Becca.<br />
You are one of our greatest accomplishments. You are resilient. You do things your way and regardless of the outcome, you figure it out for the next time. You have learned how to advocate for yourself. What works for you and what doesn't work for you all the while trying to do your best. Your empathy for others, especially those with different abilities and other twinless twins, out of this world. As we move into the next decade, you will go from 16 to 26. The college search, proms, high school graduation, heartbreak (a different kind than what you have already endured), college, Veterinary school or wherever you end up after college, maybe finding the love of your life. And I can't wait to see the places you will go...all the while knowing and living that...not all twins walk side by side, sometimes one has wings to fly.<br />
<br />
Ian z<i>t"l </i>-- The 2010 decade was different for you. Going from 6 to 13 to forever 13. You always had a smile on your face, well that was as long as you were getting what you wanted. The sparkle in your eyes could light up a room. You were always concerned about us, knowing where we were and that we, Becca, Mommy and Daddy would be okay when you went to heaven. Even the night of September 14, 2016, just hours before you took your last breath, you needed to hear we would be okay. I hope Mommy and Daddy were able to reassure you enough so you were at peace then. I also hope and need to believe you are looking down and can see that most of the time we are okay, whatever okay means.<br />
<br />
As Ralph Waldo Emerson and the Spiderman poster hanging in your room says: "What lies behind us, and what lies before us, are tiny matters compared to what lies within us". Even before we found out your time with us would be short, you knew. There was not a day you were not in pain, yet you still did everything with a smile. Looking back, I can see nothing was easy for you, every activity and movement took more energy for you than others. Everything required extra work for you to achieve all you did. You got frustrated, you got mad, you got angry...you got all of it out by screaming or crying...then you moved on and did what you needed to do. Most of the time without complaining...well except for homework with "your" Stephanie.<br />
<br />
<a href="https://pm1.narvii.com/6377/9e5ca725e4f2e2073c93fac869a7c2d518bd8260_hq.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Image result for character quote on spider man poster" border="0" height="400" src="https://pm1.narvii.com/6377/9e5ca725e4f2e2073c93fac869a7c2d518bd8260_hq.jpg" width="283" /></a>Ian z<i>t"l.</i><br />
You too had a spring in your step. You found your safe places and loved to be there. Camp Simcha Special, Gilchrist Hotel, oh and let's not forget your imagination. Oh, the places you went to your imagination. You observed everyone around you. You knew your medicines and treatments better than anyone. And let's not forget you had a knack for throwing others under the bus, especially Daddy. And we can not forget anything Spiderman...and yes Peter Parker is and always will be Spiderman.<br />
<br /></div>
<div>
Without knowing it.<br />
You both stepped up.<br />
You both took on life full force.<br />
You both looked PCH1A in the eye and said FUCK you,<br />
You both said I am here.<br />
You both lived each day to the fullest with the best of your abilities.<br />
At the time, none of us knew this.<br />
You can't go back and do life a different way.<br />
<br />
As one decade comes to a close and another one comes to a beginning, Becca, and we continue to watch you grow into the beautiful person you have started to become both inside and out. Always remember to <b>treasure, dream and live</b>.<br />
<br />
As one decade comes to a close and another one comes to a beginning, Ian <i>zt"l, </i>we will continue to move forward through our grief with some steps backward, but we will never get over it or find closure. We will remember it is okay to not be okay as Becca, Daddy and Mommy, together and individually, find our way, knowing you are looking down and watching us...with all of your working body parts.<br />
<br />
Here is to the decade of the 2020's.</div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-60825124975886046842019-11-28T09:27:00.000-05:002019-11-28T09:28:08.099-05:00Higher Power and Kintsugi<div>The house is quiet. Everyone is still asleep; even the dog has gone back to bed after doing her thing. Me, I've been up for over an hour, since 7:00 AM. I don't "sleep in" anymore. It has been quite sometime since I've "slept in". </div><div><br></div><div>For year's, at least 4 or 5, we have brunch with our friend, Freda-Dale. Last night she mentioned she would get up around 10:00 AM, since we were due to arrive at 11:00 AM. Me I said, would be up by 7:00 AM. I continued to tell her that I just can't seem to sleep in any more, I'm usually up by 7:00 AM. And today was no different. Now, sitting here, in the stillness of our home, I realize 7:00 AM; I'm almost always up by 7:00 AM. Time of death 7:00 AM. Does it mean anything? Do I just happened to wake at 7:00 AM? Honestly, I have no idea. And until now I never really thought about the time meaning anything. Maybe it's a sign. Maybe it's Ian's way of saying good morning to me each and every day. Or maybe it's his way of saying get out of bed and 'go to work' (only during the week). On the weekends I've got no idea what he's saying. As for the go to work...every morning I would go into Ian's room, say good morning, check in with his nurse, and tell Ian what was in his schedule for the day. Then with his big brown eyes, he would look at me, in his soft, quiet voice say, "go to work". Some days I replied, "I don't want to". Ian's reply, "But if you don't go, Glenn will fire you". So, I did what any good mother would do, laughed, gave him a kiss goodbye, left his room and went to work. </div><div><br></div><div>I just read on another bereaved mom's Facebook post about Kintsugi. Kintsugi is a Japanese art in which a precious bowl or vase that is shattered is put back together with gold that fills the cracks and the seams and the chips. The theory is that things that are damaged and broken are still beautiful, worthy, and precious. <br></div><div><br></div><div>2016, 2017, 2018 and 2019 have all been a years of being shattered, not being able to breathe, gathering our broken pieces and jagged shards and holding them together despite the piercing pain. Regrouping. Rebalancing. Recommitting. Hope, air, and dawn began to seep back in pieces each year. A year where gold seeped in and fused the pieces. Broken but whole. Damaged but sound. Scarred but beautiful. Over the years, we have learned to live through it all, grief and joy can live together. It’s often unsettling to experience the full range of human emotions - sometimes within seconds of each other. It’s raw and it’s messy but we are learning to live with our commingled tears of pain and tears of joy. It's a life journey and work in progess. We are constantly evolving and will continue to evolve. </div><div><br></div><div>Thanksgiving 2019. Our 4th Thanksgiving with an empty chair at the table. Thanksgiving. All holidays have an empty chair at the table and always will. Yet, we will continue to our Kintsugi.<br></div><div><div><br></div></div><div>And with all that...remember to TREASURE yesterday, DREAM of tomorrow but LIVE for today.</div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-88530232679674088832019-11-24T16:50:00.000-05:002019-11-24T16:50:02.428-05:00inspiring HOPE<div style="text-align: center;">
<div style="text-align: left;">
HOPE, by definition according to Webster's<span style="font-family: inherit;"> Dictionary, is:</span></div>
</div>
<div>
<ul>
<li><span style="font-family: inherit;">A feeling of expectation and desire for a certain thing to happen</span></li>
<li><span style="font-family: inherit;">A person or thing that may help or save someone</span></li>
<li><span style="font-family: inherit;">Grounds for believing that something good may happen</span></li>
<li><span style="font-family: inherit;">Want something to happen or be the case</span></li>
<li><span style="font-family: inherit;">Intend if possible to do something</span></li>
</ul>
<span style="font-size: large;"><b>Hope, such an important word...</b></span><br />
<span style="font-family: inherit;"></span></div>
<div>
<span style="font-family: inherit;">Over the last 2 months, HOPE has made an appearance through conversations, meetings, reminders of the past and thoughts about the future. </span>HOPE is a part of our everyday life. HOPE comes in all shapes, all forms. HOPE may look one way to you but another way to someone else; even within the same family; or even within the same situation. What may seem rational to one; may seem irrational to another. HOPE changes depending on the situation. HOPE can look one way today but a different way tomorrow. HOPE? What does it mean to you? What does it look like?<br />
<br />
Nine years ago, Thanksgiving week, November 21 - 27, 2010 - the four of us, Brian, Becca, Ian and I, we were picked up by a limo and whisked away to the airport. We were heading to Walt Disney World and Universal Studios in Orlando, Florida, to meet SPIDERMAN for Ian's Make-a-Wish Trip. We had no idea what to expect or what was in store for us. Ian's, wish granters, filled us in and made all the plans. Nothing had been left to chance, if we wanted, we got. All we had to do -- pack and wait for the adventure to begin. Then I had no idea - HOPE. Putting one foot in front of the other, taking it day by day, living in the thick of things as many, including, Brian, Becca, Ian and I, just trying to figure it all out. What was it, well then I would have told you it was whatever was the underlying reason of Ian's symptoms. Over the years and today, I will tell you it was HOPE.<br />
<br />
Every year as Thanksgiving week, comes; I am brought back to the memories of November 2010. Not just because of the 100's of photos we took but also because of the memories in my heart and mind. For Ian, while he had started to show disease progression, it was the right time for to go, he was at his "healthiest", well healthiest considering. VRK1; Pontocerebellar Hypoplasia (PCH1A) - those letters had no meaning to us then. So...without knowing the journey which laid ahead of us; we left for our stay at GIVE KIDS THE WORLD (GKTW) - Where Happiness Inspires HOPE, we made memories, we were "normal", we didn't get stared at; where we could just be.<br />
<br />
GKTW Village (an 84-acre, nonprofit resort in Central Florida that provides weeklong, cost-free vacations to children with critical illnesses and their families) was born because of one little girl, Henri Landwirth, a Holocaust Survivor, and Disney World. According to their website, their goal, quite simply, is to provide everything these deserving families need to make their trip the vacation of a lifetime. For us, not just Becca and Ian, but for Brian and I, it truly was a vacation of a lifetime. Seeing the photos and remembering the smiles on the twins faces....what it meant to all of us. For that, I am thankful and grateful. We had hope. Hope for...well hope. Hope comes in all shapes and sizes at different times and different situations.<br />
<br />
<div style="text-align: center;">
<i>One of the secrets of being successful is to follow through with a good idea. A lot of people have good ideas, but instead of acting upon them, they talk about them and don't do anything. You have to have enough faith in yourself to believe in your ideas and to act upon them. If you fail, so what? It is much better to fail than not to try at all. In fact, I'd much rather do something, than talk about doing it. ~~Henri Landwirth</i></div>
<i><br /></i>
<br />
<div>
HOPE happens when someone sees something, decides that it is desirable, realizes that they may not get it, but believes that there is still a chance of getting it. HOPE is often a long-lasting emotion. HOPE is not a single thing. It can range from virtual certainty (positive, the best) to utter desperation (negative, the worst). It can range from one extreme to the other and everything in between, for each situation. It can be for something in the immediate future or it can be for something far off. "You can raise a person's HOPE, dash it on the rocks of uncertainty, raise it out of the waters and toss it around until the other person will grasp at whatever straw you throw at them."<br />
<br />
Can HOPE really be simple? Having HOPE can be simple, it is the follow through that can be difficult. It may be out of your control to have your HOPE come to fruition. What about society, does it dictate what HOPE should look like for each person, each family, each set of circumstances, each, well just each? Who gets to say what your HOPE looks like?<br />
<br />
YOU DO.<br />
<br />
The actual hope that people feel does not necessarily match the real probability of success. Every parent hopes for their children to live their best life possible. Yet, you don't have control of all that goes into your child's best life possible. What we HOPED for Ian's best life possible changed more times than I can count, well actually, what we HOPED for Becca's best life possible changed more times than I can count. What we didn't have control over was that PCH1A came into our lives. What we didn't and don't have control over is the current prognosis for children with any type of PCH. As current years turn into the future years, we have HOPE that others who possess different skills than us, will change HOPE into reality. What we do have control over and HOPE is how and what we do with what we don't have control over.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwQ8Brar6xaFf8nG0qetZQptRw9ermxSW-o4n4gGtTO0qxVwtehXgGXAFc2J2ScQDiMDPkX152NkzRzsi1QAAHSvgkIV2VhuOETuvc5Z3Fm6UglJIsErGPv3mlazWt6YCoTldSXwkcMYs/s1600/Screenshot_20191024-160858_Chrome.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="899" data-original-width="959" height="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwQ8Brar6xaFf8nG0qetZQptRw9ermxSW-o4n4gGtTO0qxVwtehXgGXAFc2J2ScQDiMDPkX152NkzRzsi1QAAHSvgkIV2VhuOETuvc5Z3Fm6UglJIsErGPv3mlazWt6YCoTldSXwkcMYs/s320/Screenshot_20191024-160858_Chrome.jpg" style="text-align: center;" width="320" /></a>Some days all we hoped for was a good day. Hope for Ian and Becca to be happy. To open the door to our home and see the sparkle in Ian's eyes. To open the door to our home and see Becca smiling and laughing. To have our community support all of us, even when we didn't know what we needed, even when we didn't realize it was HOPE. Looking back, I can say we always did and do have HOPE, even without realizing what we did and do HOPE for. Even when we cannot change the ultimate outcome, we can almost always find ways to improve the journey. There is always HOPE.<br />
<br />
<br />
You never know until they are gone just how many lives they've touched. Even those you'd never expected for them to touch. There is not a day which goes by that I don't wish for my family to physically be complete. That will never be, my family will always be complete in my heart. After living through our journey...I do my best to HOPE. Hiding behind my past is never going to get me anywhere in life. Worrying constantly. Have courage. Finding a way to move forward, move past the fear? Despite all the obstacles we've overcome and the hole that lies in Becca, Brian and my heart, it's about still living life without fear. Brave, hopeful. HOPE helps you to not become someone who isn't truly living, but just going through the motions, never experiencing anything just breathing. We may not always be successful with this and sometimes it is one step forward, two steps back, but we will keep moving forward. I do know the 13 physical years, Brian and I had with Becca and Ian are what have made us who and what we are.<br />
<br />
Constantly changing...HOPE does. We always have HOPE, even when we don't realize we do. HOPE is simple. HOPE is complex. HOPE is powerful. Just HOPE standing all on its own. HOPE is ALWAYS HOPE,</div>
</div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-88456782289022799502019-09-12T09:58:00.002-04:002019-09-14T23:43:43.629-04:0026280 Hours<div dir="ltr">
How is it possible? Three years; 36 months; 152 weeks; 1,095 days... of this life without you. It doesn't matter that we knew the day would come. There was still a part of me that wishes it wouldn't come. Wishing every single second of every single day and it still didn't matter. The day still came. It still seems like a nightmare, a nightmare that I want to wake up from. But one I will never, never, ever wake up from. </div><div dir="ltr"><br></div><div dir="ltr">September 14, 2016, at approximately 10:00 PM, Mommy and Daddy came into kiss you good night, to tell you we loved you. You looked so tired. You looked at us with your big, beautiful brown eyes and quietly told us you were ready to go to heaven. You had<span style="font-family: sans-serif;"> never said yes before, all the other times we asked you...you said no. I still remember the feeling of sickness I</span><span style="font-family: sans-serif;"> had when you said yes. It took everything in me to find the words and the way to tell you "to go". It took</span> all we could to not break down as we told you to go and that we would be OK. But that was bullshit, complete and utter bullshit. We knew we needed to say that, you needed to hear from us that we would be OK. You needed to believe we would be OK. What is OK? OK? That is the answer I give to others when they ask how we are? OK. That is the answer others want to hear. They don't want to hear the truth, the truth...we are still broken and we will always be broken. </div><div dir="ltr"><br></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUau55AiKPfNjnpx9g7HDuh8yjeEfzi7Imob3zMWvb01nJhLrAUUUxcCY6IT2CVbUE2zbOy_ktj-8CFjDvK2MGIX3nAXuVkWyRxBJJrlXwKuvLRHiwkVn02MPl0QtNSTmSFT0Dp7fqphQ/s1600/20190911_161800.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="662" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUau55AiKPfNjnpx9g7HDuh8yjeEfzi7Imob3zMWvb01nJhLrAUUUxcCY6IT2CVbUE2zbOy_ktj-8CFjDvK2MGIX3nAXuVkWyRxBJJrlXwKuvLRHiwkVn02MPl0QtNSTmSFT0Dp7fqphQ/s320/20190911_161800.jpg" width="220"></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br></div>
Wednesday night, September 11, 2019...as we lite the yahrzeit candle, I struggled with the fact that it's been 3 years. Three years since you were in our home, laying in your bed, breathing...regardless of how tired and weak you were; you were here. How much we wanted you here didn't matter...it didn't and doesn't matter, you still took your last breath while you were sleeping. I think you took your last breath while you were sleeping for us; so we wouldn't have to watch you take that one last breath. It still just sucks...all of it sucks, it's just not right. Parents aren't supposed to bury their children. The natural order is not for a child to pass away before; a mother and a father ARE NOT SUPPOSED TO BURY THEIR CHILD. But that doesn't matter as it became our order. Our order was for you to go first, before Mommy, Daddy and Becca. Somehow we have to find a way to accept it. But is "accept it" really the way to explain it. Accept it doesn't seem right. But how else? I'm not sure I will ever be able to find way to "accept it". I won't ever accept it. Some days I want to scream and tell the world what they can't see...all the grief and heartache inside. What people can't see on the days when my mask is on, what people can't see on the days when all I want to do is stay in bed and be with you in some ways by cuddling with some of your stuffed animals or pillow pets; just anything that you have touched.<div><br></div><div>You were 13 years old. There was not a day in your life when you weren't in pain. Not a day when you fought to be here. You fought so hard on some days, some days you had to fight harder than others. We had so many dreams for you. But because of two letters being switched, two fucking letters...all of those dreams were smatched. Dreams taken away. Dreams that we had even before you and Becca were born. We will never see you go to high school, graduate high school, have your first kiss, first girlfriend...you get the point. There is not a second, minute, hour, day, week, month, year...that my heart is broken. A piece gone, it will never be whole again. </div><div>
<br>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWWhzvEQflRHOQjF_iiHzXkSf6Xsz3wRrLkOrtDdkFCsPukFyBjxGzg4C5ZWGXzMGf0sLw0y6vY2yk9S_3oMvKu1QFzKPqc4xeVKo_gRc6pGgxTab8BH5r2-2Ru3FQnUKAt7MsITgvzH0/s1600/FB_IMG_1568232851766.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1500" data-original-width="1500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWWhzvEQflRHOQjF_iiHzXkSf6Xsz3wRrLkOrtDdkFCsPukFyBjxGzg4C5ZWGXzMGf0sLw0y6vY2yk9S_3oMvKu1QFzKPqc4xeVKo_gRc6pGgxTab8BH5r2-2Ru3FQnUKAt7MsITgvzH0/s320/FB_IMG_1568232851766.jpg" width="320"></a></div>
<div class="separator" style="clear: both; text-align: right;">REST EASY MY SWEET BABY BOY. </div><div class="separator" style="clear: both; text-align: right;">MAY HIS MEMORY ALWAYS BE FOR A BELSSING!</div>
</div>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-2972036655160669652019-09-02T21:24:00.000-04:002019-09-02T21:24:47.573-04:00A Little Bit of Him With Each of Us<div>
Dark places. Rock bottom. The dark places hit. Sometimes with no warning. Sometimes with a little bit of warning. Sometimes you can "prepare", know when the "triggers" are approaching -- holidays, birthday, death date, milestones of his twin sister. The things Ian should be doing with Becca, they should still be a "we" on earth; not an "I" on earth and an "I" in heaven. The dark places come. The dark places go. Sometimes quickly. Sometimes slowly as if time hasn't moved since Ian passed away. Dark times last weeks. Dark times last days. Dark times last minutes. Dark times last seconds. There is no rhyme or reason to when they may come or how long they will last. </div>
<div>
<br /></div>
<div>
The dark times hit. You have to get up. Put the first foot on the floor and then the second one. The dark places and grief don't care what else is going on in your life. They don't care about your other child, spouse or anything else. Some how you have to figure it out. Life still happens. Becca needs caring for; she needs to get to school, to the horseback riding barn, to doctors appointments, just to, just to places. The dark places and grief don't care. I get up to do what I have to because I have to. I go to do what I have to because not doing is not an option. </div>
<div>
<br /></div>
<div>
Tomorrow, Becca starts her junior year of high school, her 3rd school year without Ian. The 3rd year I will take the obligatory first day of school photo with Becca and an empty spot next to her. Maybe this is something that Becca realizes maybe not, but it is something I will keep to myself; well at least not bring up to her. Not how much the beginning of the school year is a "trigger", not how the beginning of the school year, the beginning of September is, well just is. Here's to Becca and all the other kids starting school tomorrow having a great a year. </div>
<div>
<br /></div>
<div>
All of the above being said, it's still so fucking hard. The weight on my chest seems to get heavier and heavier .... sometimes it's so light I don't even realize its there; others times it's so heavy I can't breath. Sitting on the sofa in the family room with Brian and Becca watching TV, seeing all the family photos -- of the twins -- the weight comes and it gets heavy. What I would do to see his smile, to see the sparkle in his eyes, to hear his laughter, to get that first day of school photo. To know he'll graduate high school, go onto college, to fall in love...you know the rest of it. There are times when I'm putting on a face and doing what I have to do. There are other times when I just don't put on the face and don't leave the house. I revert into myself....and eventually come out. For now that's just how I do it. </div>
<br />
Have you ever heard of "continuing bonds" ?<br />
In summary it goes like this - when your loved one dies grief isn’t about working through a linear process that ends with ‘acceptance’ or a ‘new life’, where you have moved on or compartmentalized your loved one’s memory. Rather, when a loved one dies you slowly find ways to adjust and redefine your relationship with that person, allowing for a continued bond with that person that will endure, in different ways and to varying degrees, throughout your life. This relationship is not unhealthy, nor does it mean you are not grieving in a normal way. Instead, the continuing bonds theory suggests that this is not only normal and healthy, but that an important part of grief is continuing ties to loved ones in this way. Rather than assuming detachment as a normal grief response, continuing bonds considers natural human attachment even in death.<br />
<br />
With that in mind, the key chain below is a little piece of Ian for Brian, Becca and myself to carry with us...<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4uJBDZMbL6XAW4jZWvw4I8agJParmX4mhPfQ7HjVvfMWtrMejbirnvpCz2P0SRuv1B_ONHAc-8zxVwYTUWQQ6sc-pVsYJQP7KLWxrdgq9BaarfqdYlyt8qER5TS6D3mZ1GpbRx7H1Us/s1600/20190826_200248.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4uJBDZMbL6XAW4jZWvw4I8agJParmX4mhPfQ7HjVvfMWtrMejbirnvpCz2P0SRuv1B_ONHAc-8zxVwYTUWQQ6sc-pVsYJQP7KLWxrdgq9BaarfqdYlyt8qER5TS6D3mZ1GpbRx7H1Us/s320/20190826_200248.jpg" width="240" /></a></div>
<br />
Life is a Journey --<br />
Birth is a beginning<br />
And death a destination<br />
And life is a journey:<br />
From childhood to maturity<br />
And youth to age;<br />
From innocence to awareness<br />
And ignorance to knowing;<br />
From foolishness to discretion<br />
And then perhaps to wisdom.<br />
From weakness to strength or<br />
From strength to weakness<br />
And often back again;<br />
From health to sickness,<br />
And we pray to health again.<br />
From offence to forgiveness,<br />
From loneliness to love,<br />
From joy to gratitude,<br />
From pain to compassion,<br />
From grief to understanding,<br />
From fear to faith.<br />
From defeat to defeat to defeat<br />
Until, not looking backwards or ahead,<br />
We see that victory lies not<br />
At some high point along the way<br />
But in having made the journey<br />
Step by step,<br />
A sacred pilgrimage.<br />
Birth is a beginning<br />
And death a destination<br />
And life is a journey.<br />
~~ Rabbi Alvin Fine<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPksCBVJsibhu5R29-QMhnZQVwngq79EmUhu3QGEmP1jIyPwqpGDS_YA2v9oKeM4se0AK4arnxVMoVIBZWqUTIGx4e3rDyqMLnSTvoOoIYc_aQdy5lOgGd-d5UxEFnfPdjf3VvRA4R7w4/s1600/20190826_200313.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPksCBVJsibhu5R29-QMhnZQVwngq79EmUhu3QGEmP1jIyPwqpGDS_YA2v9oKeM4se0AK4arnxVMoVIBZWqUTIGx4e3rDyqMLnSTvoOoIYc_aQdy5lOgGd-d5UxEFnfPdjf3VvRA4R7w4/s320/20190826_200313.jpg" width="240" /></a></div>
<br />Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-91753551387180783662019-08-10T09:24:00.000-04:002019-08-10T09:24:24.373-04:00 SO IMPORTANT...PLEASE, PLEASE READ and TALK TO YOUR KIDS ABOUT DISABILITIES<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://themighty.com/2018/08/please-talk-to-your-kids-about-disabilities">The Mighty</a></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5zvqiv-0v4WtKfWdVTWdh5_8ZP0Y9qDl-01XPfd1AXQDGab4B6NFnTJXiiTJu_r4PbgoxtPjfMn7In9XcU8RTDbmYV_xOYG05f-SqyhhcRSmeiAOV77OPLq9NWyY2wZRD6czhq_swV9Y/s1600/179081785.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="740" data-original-width="1500" height="157" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5zvqiv-0v4WtKfWdVTWdh5_8ZP0Y9qDl-01XPfd1AXQDGab4B6NFnTJXiiTJu_r4PbgoxtPjfMn7In9XcU8RTDbmYV_xOYG05f-SqyhhcRSmeiAOV77OPLq9NWyY2wZRD6czhq_swV9Y/s320/179081785.jpg" width="320" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="color: red; font-family: "times" , "times new roman" , serif;">This article hits home. As Ian, continued to decline and his illness became more apparent, his friend list became smaller and smaller. </span><span style="color: red; font-family: "times" , "times new roman" , serif;">As Ian continued to decline and his illness became more apparent, Becca's friend list became smaller and smaller. As</span><span style="color: red; font-family: "times" , "times new roman" , serif;"> Ian continued to decline and his illness became more apparent and required more care, our friend list became smaller and smaller. I do realize there are many factors which played into this and that's OK. However, it could have been different, especially for Ian. Please take a moment to really read this article and talk with your children, regardless of age about the importance of acceptance of others regardless of disability. Parents lead by example, reach out to the parents, talk with the person with the disability. Remember we all out on our pants the same way.</span><br />
<span style="color: red; font-family: "times" , "times new roman" , serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjccwJZ8AqU7AwF5Qsa2UZy666J8s4Mo5YKBY3IYS2-HpL5xGHQX1TDUVimILj9s1dVxZyb4RLTLQFIldcxBpMU6aWAL6H0uw5qStChAPTKj1gUHzU2oEB-Y1WcpNBFqzWUVc5b2bET1yA/s1600/FB_IMG_1554496416689.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjccwJZ8AqU7AwF5Qsa2UZy666J8s4Mo5YKBY3IYS2-HpL5xGHQX1TDUVimILj9s1dVxZyb4RLTLQFIldcxBpMU6aWAL6H0uw5qStChAPTKj1gUHzU2oEB-Y1WcpNBFqzWUVc5b2bET1yA/s320/FB_IMG_1554496416689.jpg" width="240" /></a></div>
<span style="color: red; font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">Dear Parents,</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">School is beginning after a nice relaxing summer break. I hope you had fun with your children and they are prepared to go back to school. As you sit down to discuss topics like manners, school etiquette and homework policies, please add disability awareness and being open to friendships with children who have disabilities. I am asking you to do this as a special education teacher and as someone who has cerebral palsy.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtYuVTJmV4nF0RWvQc2GHCwckG4iqGcLkz07pTKB12f6mlkJA0S7vTzrDdekUV1XM9IXqm18XGX-sTtWBO2s05eGWaIJ1d_XoIce4P-v2ltn03Ls5DX3u8nGKsBc2ecWOXgBYpZeGiei4/s1600/FB_IMG_1553880266025.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtYuVTJmV4nF0RWvQc2GHCwckG4iqGcLkz07pTKB12f6mlkJA0S7vTzrDdekUV1XM9IXqm18XGX-sTtWBO2s05eGWaIJ1d_XoIce4P-v2ltn03Ls5DX3u8nGKsBc2ecWOXgBYpZeGiei4/s320/FB_IMG_1553880266025.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<span style="font-family: "times" , "times new roman" , serif;">You might believe your child would never leave another child out or tease someone. I'm here to tell you that your child isn't bad for doing these things; they are just not prepared to deal with peer pressure to make fun of someone who is different. They might feel you would even think less of them if they choose to be friends with someone who is different. Communication is so important.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBj7b9yW-2QsuNQTxmnNhPNSiBEcnG5M9WQsob1dHNaqkTaMlm2goVnWAavZqu3H3jVpGF_LsJwZrT2a2m-IufWdncvmBS4sgA7Jbj2FzwDlUGKJPLByyrsMtb0gE_gbpKzC46uVxgVIE/s1600/Father%2527s+Day+2004+047.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBj7b9yW-2QsuNQTxmnNhPNSiBEcnG5M9WQsob1dHNaqkTaMlm2goVnWAavZqu3H3jVpGF_LsJwZrT2a2m-IufWdncvmBS4sgA7Jbj2FzwDlUGKJPLByyrsMtb0gE_gbpKzC46uVxgVIE/s320/Father%2527s+Day+2004+047.jpg" width="320" /></a></div>
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">Children learn by example, and they are always observing what their parents are doing. Too often as I am out and about parents yell at their child for being too close to my wheelchair or acting as if I'm going to run over their child. No one in a wheelchair or acting as if I'm going to run over their child. No one in a wheelchair purposely sets out to run down children. These behaviors teach children that people who use wheelchairs are to be alone and avoided. It says that people who use wheelchairs are scary. Please stop doing this. If your child is in our way, we will go around them like anyone else. Let them talk and ask people with disabilities questions. Show them it's completely normal to interact with someone who has a disability.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHn899dCfXGvmJqLt4vzcDwvoU3zGQOo7_Rem0nZPJccZz519ekJan1y_voduHbFvRlhuCOoPoRXYADh_GupLxaLuaq4smb9GvtSiHjdx9xLzjk5ktSyWYPbB_JVe1wr_3KXshUZdGdtY/s1600/20150810_100306.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHn899dCfXGvmJqLt4vzcDwvoU3zGQOo7_Rem0nZPJccZz519ekJan1y_voduHbFvRlhuCOoPoRXYADh_GupLxaLuaq4smb9GvtSiHjdx9xLzjk5ktSyWYPbB_JVe1wr_3KXshUZdGdtY/s320/20150810_100306.jpg" width="180" /></a></div>
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">Discussing disabilities is crucial with your children. Inclusion is more and more prevalent in classrooms, so it's highly likely your children will encounter someone who has a disability. They might have a teacher with a disability as well. They need to know that people who have disabilities are not special. They are the same as anyone else, but they have a disability they adapt to. You need to tell them it's OK to be friends with them, but never OK to tease, bully, or leave them out of a group.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg32xDoWLkhQmLdepgpkJJ2BTHiAA17kQuggT7lkg8Fdx1nRk0MF17cepxZFlaizX4uDm0MGJFMUpHXPTSVFhvLa9sLwGHp3IfJPpUYMgXIv6rZNCMs1-GGdDcdA5tTvbe9abnOIJKR9B4/s1600/FB_IMG_1536960455924.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg32xDoWLkhQmLdepgpkJJ2BTHiAA17kQuggT7lkg8Fdx1nRk0MF17cepxZFlaizX4uDm0MGJFMUpHXPTSVFhvLa9sLwGHp3IfJPpUYMgXIv6rZNCMs1-GGdDcdA5tTvbe9abnOIJKR9B4/s320/FB_IMG_1536960455924.jpg" width="320" /></a></div>
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">When having a birthday party, please do not forget to invite everyone, even the child who has a disability. My feelings were deeply hurt when my peers would happily talk about birthday parties they had attended over the weekend -- parties I never got invited to. I knew it was because I had cerebral palsy. </span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw8hyphenhyphen7_buAG871drp3LzPjuOIXYqZjGkufkfQSkdaVYboJuKZE7yBtj46dR_YH7uukifNxcxOK96-38Q5lNLxmrH-HEGhehZ2L5BTQUTDkwCM5ts0suKFbT-g_Y20dsSD8hxKrLhgFLeQ/s1600/20160405_101502.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw8hyphenhyphen7_buAG871drp3LzPjuOIXYqZjGkufkfQSkdaVYboJuKZE7yBtj46dR_YH7uukifNxcxOK96-38Q5lNLxmrH-HEGhehZ2L5BTQUTDkwCM5ts0suKFbT-g_Y20dsSD8hxKrLhgFLeQ/s320/20160405_101502.jpg" width="180" /></a></div>
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">I cannot stress enough how important communication is with your children about accepting differences. It is never OK to tease someone for thongs they have no control over such as walking, speech, moving and even learning. It is not OK to be against someone because they're different. If others are teasing someone, they don't need to participate. Stick up for the ones they're teasing. Treat people with respect and the way you want to be treated.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYdwkgU7vKLojiHuKt2F0NR-q8NzPZ6q8wKUKLJmStS3RNPluSTbU96eyS5dGLwrPhkNAY_Q-ZcJxEqJa_3CEsik1kZ3MSVIkkbzZQEfBolcuaWa4a1g7fDUFiPRbFzgrpoEhNvd7YHCo/s1600/UA+edit-100.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1068" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYdwkgU7vKLojiHuKt2F0NR-q8NzPZ6q8wKUKLJmStS3RNPluSTbU96eyS5dGLwrPhkNAY_Q-ZcJxEqJa_3CEsik1kZ3MSVIkkbzZQEfBolcuaWa4a1g7fDUFiPRbFzgrpoEhNvd7YHCo/s320/UA+edit-100.jpg" width="320" /></a></div>
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">Thank you for reading, and I wish every student a happy school year.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho5VAcZ1Krx1yW0tKvubu3c890NwI8EkYcWzTkhQwt8GpyOLWAhiUlofHJyyssRVr4yVwKnY4yOEqoGqI-IP5ZAaLJBg9xjgVqNPP8ZZm05g5Yh-vBc69wH7xaQMqdPzx6K7yH9znL7LY/s1600/FB_IMG_1542930854987.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho5VAcZ1Krx1yW0tKvubu3c890NwI8EkYcWzTkhQwt8GpyOLWAhiUlofHJyyssRVr4yVwKnY4yOEqoGqI-IP5ZAaLJBg9xjgVqNPP8ZZm05g5Yh-vBc69wH7xaQMqdPzx6K7yH9znL7LY/s320/FB_IMG_1542930854987.jpg" width="320" /></a></div>
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-52841679309219343932019-08-03T19:43:00.000-04:002019-08-03T19:43:13.257-04:00Happy National Twins Day - PINTO and BEANHappy National Twins Day Pinto and Bean.<br />
<br />
Pinto and Bean you made Daddy and I parents. From the day we found out we were expecting, we were parents. The day the doctors office called to confirm, they told me they were pretty sure it was twins because my numbers were so high. Shortly after the phone call, we were in the doctors office getting an ultrasound and it was confirmed....TWINS. From that moment, you were PINTO and BEAN.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1O-NL0D9_5d_6aW0XmX-svye_97eCgAW0aKANAhTiNxqR5lN0XRvjj327qCdw7k3qUuU2YMajfZn44kznRrQa9K_gEQrfBicIuEROdsFpMuK8ligqq8oDhNW1FPiiEkoUS_pWQb304aY/s1600/20190803_183357.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1O-NL0D9_5d_6aW0XmX-svye_97eCgAW0aKANAhTiNxqR5lN0XRvjj327qCdw7k3qUuU2YMajfZn44kznRrQa9K_gEQrfBicIuEROdsFpMuK8ligqq8oDhNW1FPiiEkoUS_pWQb304aY/s320/20190803_183357.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Our first photo. So who is who...Pinto became Becca and Bean became Ian, Twin A and Twin B. We were overjoyed yet at the same time petrified, how were we going to go from 2 to 4 in a matter of seconds or minutes or however long it would take when delivery day came. Some how we did it, even when you tag teamed...with almost everything. We never imagined there would be a time when one of you would not physically be here, that one of you would pass away young, too young - unfair. But this is our story of PINTO and BEAN. We have all the memories which will forever be in our hearts. All of our days will forever be missing BEAN, Ian you will always be with us...watching over us.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLIbKwyMpbDz9f8a94a-5MBO_OCUpgPYIPNhUEt-PmtrPm4v0DQKD3Ywdb4AzqmO8xm0YXAMt4_ohAqApF4jYimebcdyE6pk5IBER7AvDiT4TcqohcQNeeah91ofkGFP4Ov-k-T8oXipI/s1600/becca+and+ian.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="360" data-original-width="480" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLIbKwyMpbDz9f8a94a-5MBO_OCUpgPYIPNhUEt-PmtrPm4v0DQKD3Ywdb4AzqmO8xm0YXAMt4_ohAqApF4jYimebcdyE6pk5IBER7AvDiT4TcqohcQNeeah91ofkGFP4Ov-k-T8oXipI/s320/becca+and+ian.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwY5VidcT9zOmhZp2MuyNaC5vRnf3kJGmYZWfIvu1doyx9pvDp0brh7tBfxGdrFPA2F-UIVmLr9L0p42pe883mlovDR4CB7LTw-1Xf_QVBoPljUfE_LtSdtv0M_IxxYPH8t11Jh66vyz8/s1600/UA+edit-100.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1068" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwY5VidcT9zOmhZp2MuyNaC5vRnf3kJGmYZWfIvu1doyx9pvDp0brh7tBfxGdrFPA2F-UIVmLr9L0p42pe883mlovDR4CB7LTw-1Xf_QVBoPljUfE_LtSdtv0M_IxxYPH8t11Jh66vyz8/s320/UA+edit-100.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyxreNjeXcdYCiKNNlCS4CIgSieO_AnCt_a1sybL8o85baM_G4k8An8widhHgg1HuvrGwFw_2Sxxqhq7dZ64IX9PP0g86exdo8hFM8CJitV8fe9nE6woAWUIDgt9PCWUkvOvFpJpkYeM/s1600/FB_IMG_1462706473776.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="400" data-original-width="550" height="232" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyxreNjeXcdYCiKNNlCS4CIgSieO_AnCt_a1sybL8o85baM_G4k8An8widhHgg1HuvrGwFw_2Sxxqhq7dZ64IX9PP0g86exdo8hFM8CJitV8fe9nE6woAWUIDgt9PCWUkvOvFpJpkYeM/s320/FB_IMG_1462706473776.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj22kxeI9ys3L1Iii9xQf_0W2wqHJOFgOHB7LyepzIvFjDM6Z3jwMEKEvxmtIKv37xYBR5B0KqohJcKQQBF5BjlQfSlZKtT9xIZs8nwNOT4mvKaq0NVyBkZANmfto1rXZ99jW2tuTxSUss/s1600/04.08.04.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj22kxeI9ys3L1Iii9xQf_0W2wqHJOFgOHB7LyepzIvFjDM6Z3jwMEKEvxmtIKv37xYBR5B0KqohJcKQQBF5BjlQfSlZKtT9xIZs8nwNOT4mvKaq0NVyBkZANmfto1rXZ99jW2tuTxSUss/s320/04.08.04.jpg" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpcAtXVWh5E5BOYNpCs59okwrr6AJimLggKMaT7X9yE2fnTqkgb5cfejOGYG4DRy8m8Xgp9ig2ZAA-qJRlzB3zMSo70qXA5HmXe6VnBoPe5oVt7Ji8r7_Vz89OaE8sdllljAOGbzxaYeY/s1600/FB_IMG_1462741596171.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="835" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpcAtXVWh5E5BOYNpCs59okwrr6AJimLggKMaT7X9yE2fnTqkgb5cfejOGYG4DRy8m8Xgp9ig2ZAA-qJRlzB3zMSo70qXA5HmXe6VnBoPe5oVt7Ji8r7_Vz89OaE8sdllljAOGbzxaYeY/s320/FB_IMG_1462741596171.jpg" width="278" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
LIFE IS A JOURNEY</div>
<div class="separator" style="clear: both; text-align: center;">
Birth is a beginning</div>
<div class="separator" style="clear: both; text-align: center;">
And death a destination</div>
<div class="separator" style="clear: both; text-align: center;">
And life is a journey;</div>
<div class="separator" style="clear: both; text-align: center;">
From childhood to</div>
<div class="separator" style="clear: both; text-align: center;">
maturity</div>
<div class="separator" style="clear: both; text-align: center;">
And youth to age;</div>
<div class="separator" style="clear: both; text-align: center;">
From innocence to</div>
<div class="separator" style="clear: both; text-align: center;">
awareness</div>
<div class="separator" style="clear: both; text-align: center;">
And ignorance to</div>
<div class="separator" style="clear: both; text-align: center;">
knowing;</div>
<div class="separator" style="clear: both; text-align: center;">
From foolishness to</div>
<div class="separator" style="clear: both; text-align: center;">
discretion</div>
<div class="separator" style="clear: both; text-align: center;">
And then perhaps to</div>
<div class="separator" style="clear: both; text-align: center;">
wisdom.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
From weakness to</div>
<div class="separator" style="clear: both; text-align: center;">
strength or</div>
<div class="separator" style="clear: both; text-align: center;">
From strength to </div>
<div class="separator" style="clear: both; text-align: center;">
weakness</div>
<div class="separator" style="clear: both; text-align: center;">
And often back again;</div>
<div class="separator" style="clear: both; text-align: center;">
From health to</div>
<div class="separator" style="clear: both; text-align: center;">
sickness,</div>
<div class="separator" style="clear: both; text-align: center;">
And we pray to</div>
<div class="separator" style="clear: both; text-align: center;">
health again.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
From offence to</div>
<div class="separator" style="clear: both; text-align: center;">
forgiveness,</div>
<div class="separator" style="clear: both; text-align: center;">
From loneliness to</div>
<div class="separator" style="clear: both; text-align: center;">
love,</div>
<div class="separator" style="clear: both; text-align: center;">
From joy to</div>
<div class="separator" style="clear: both; text-align: center;">
gratitude,</div>
<div class="separator" style="clear: both; text-align: center;">
From pain to</div>
<div class="separator" style="clear: both; text-align: center;">
compassion,</div>
<div class="separator" style="clear: both; text-align: center;">
From grief to</div>
<div class="separator" style="clear: both; text-align: center;">
understanding,</div>
<div class="separator" style="clear: both; text-align: center;">
From fear to faith. </div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
From defeat to defeat</div>
<div class="separator" style="clear: both; text-align: center;">
to defeat</div>
<div class="separator" style="clear: both; text-align: center;">
Until, not looking</div>
<div class="separator" style="clear: both; text-align: center;">
backwards or ahead,</div>
<div class="separator" style="clear: both; text-align: center;">
We see that victory </div>
<div class="separator" style="clear: both; text-align: center;">
lies not</div>
<div class="separator" style="clear: both; text-align: center;">
At some high point</div>
<div class="separator" style="clear: both; text-align: center;">
along the way</div>
<div class="separator" style="clear: both; text-align: center;">
But in having made</div>
<div class="separator" style="clear: both; text-align: center;">
the journey</div>
<div class="separator" style="clear: both; text-align: center;">
Step by step,</div>
<div class="separator" style="clear: both; text-align: center;">
A sacred pilgrimage.</div>
<div class="separator" style="clear: both; text-align: center;">
Birth is a beginning</div>
<div class="separator" style="clear: both; text-align: center;">
And death a destination</div>
<div class="separator" style="clear: both; text-align: center;">
And life is a journey.</div>
<div class="separator" style="clear: both; text-align: center;">
~~ Rabbi Alvin Fine</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG1KnMc9uudjXMC6onpybzowAUeFNUxWEX1yCKli2jDwSrURvkwqlJnHfxFghQv3T-b3-_PuDTLXY8DgMDUWYk641vqUeCLLCBBDgE1vjjrMuypP3xG5twEMDatsMduF7bfBlo4mnG8Hc/s1600/FB_IMG_1564874326237.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="372" data-original-width="960" height="124" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG1KnMc9uudjXMC6onpybzowAUeFNUxWEX1yCKli2jDwSrURvkwqlJnHfxFghQv3T-b3-_PuDTLXY8DgMDUWYk641vqUeCLLCBBDgE1vjjrMuypP3xG5twEMDatsMduF7bfBlo4mnG8Hc/s320/FB_IMG_1564874326237.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-4758562160007299692019-07-10T21:22:00.000-04:002019-07-10T21:24:29.520-04:00He's coming to Alabama with US!<p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3FsAVlk_3BqxGEg06ulDene43171xevhZ06dejfkm3BlrHuCH0dsnfzcs71g0jOPnb5tRwXRf23AE0IefbOngo8oZSJPUiUlm0fxUFzxsfFKhMM5F-ThbvKsClQdWqJAMd9yEtnszoJc/s1600/IMG955035-781223.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3FsAVlk_3BqxGEg06ulDene43171xevhZ06dejfkm3BlrHuCH0dsnfzcs71g0jOPnb5tRwXRf23AE0IefbOngo8oZSJPUiUlm0fxUFzxsfFKhMM5F-ThbvKsClQdWqJAMd9yEtnszoJc/s320/IMG955035-781223.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_6712210033024932610"></a></p><p class="mobile-photo"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD5ZI4PoTQgfJo-Qmhfj5ScD73qG8LKf3JFAgoeTBux1zLhNNG4xsYKDNto8Q5K75abw1sSn9RDq3ZuQ1mcXWncaGvlwGBQgx1zvfxOiIECEzoUCVW9lX0KBrPqE5Wuo3CANKhc2T2TZI/s1600/584464699-783797.jpg"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD5ZI4PoTQgfJo-Qmhfj5ScD73qG8LKf3JFAgoeTBux1zLhNNG4xsYKDNto8Q5K75abw1sSn9RDq3ZuQ1mcXWncaGvlwGBQgx1zvfxOiIECEzoUCVW9lX0KBrPqE5Wuo3CANKhc2T2TZI/s320/584464699-783797.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_6712210045553258082"></a></p><div dir="auto">So imagine being at work, getting a text from my cousin, Michelle Ba'rav saying she had yet another Spiderman incounter...this is what she said...<div dir="auto"><br></div><div dir="auto">Spiderman spotting! Today while dropping Lilah off for band camp, Lilah pulled her suitcase out from the car and subsequently tripped over something. She moved the suitcase and found this little object from heaven. Ian has been sending lots of Spiderman messages to me lately! The craziest thing about finding this Spiderman today, is that tomorrow Becca, Marci Weinberg Scher and Brian, leave for the twinless twin event in Alabama! Ian sent Spiderman to keep watch on their travels ❤️</div><div dir="auto"><br></div><div dir="auto">And then she dropped him off so we can take him with us... Becca will be with her people!</div></div> Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-24581845952792339162019-07-06T13:42:00.002-04:002019-07-06T19:47:24.527-04:00Twinless In Ohio - This Week - Twinless In AlabamaHave you ever met a set of twins? Could you imagine only meeting one of them? This is my story, about being a twinless twin. My twinless twin journey began on September 15, 2016 but this journey will last a lifetime. That day will forever be ingrained in my mind.<br>
<br>
What follows is some background information for clarification. My twin brother, Ian Alexander Scher, was as my loving, wonderful parents would say "all boy". He had brown hair that matched milk chocolate under the right light. His smile could light up a room. His eyes, those eyes, I find mirror mine so much, yet they didn't mirror mine enough. His eyes revealed that he was an old soul. He showed so much emotion in what I would call boring, muddy, dirt like brown eyes.<br>
<br>
Ian had a rare genetic disorder that took him from walking to using a walker and leg braces to being wheelchair bound and 100% dependent on people. He had stopped eating earlier that week. No food at all and when he did eat it was small bits; almost crumb like bites at a time. Ian had also stopped drinking. Granted he didn't drink much at all. He stopped drinking anything -- no soda, no water; no liquid was going into his body unless it was for his medical needs.<br>
<br>
So back to September 15, 2016, it was 5:45 am. My annoying school alarm would go off in about fifteen minutes. My mom came in my room to wake me up and she said "Boo (one of my many nicknames among my family members) it's Ian..." She took a deep breath, almost as if she hadn't been breathing; as if she was underwater for a long time and had just come up for air "Daddy and I were awakened by the nurse (who watched my brother so my parents could sleep) about 5 minutes ago. Ian is unresponsive. It's time. We already made all the calls we had to." Without a doubt, I paled. My peach skin took on the color of freshly fallen snow. I probably looked like I had just seen a ghost.<br>
<br>
I instantly got out of bed and went into Ian's room. In his room, I saw my twin brother. Half of myself and a person who is dearer to me than any other person would ever be. He was laying there like he was sleeping. Maybe he was or maybe he wasn't. It's hard to know even to this day if he was sleeping. Or had he already joined God in heaven? But there was this person I had never thought I would have to live without on his deathbed or already dead and back with the creator of life himself. At 7:00 am, Ian passed away and calls were made to my heartbroken family.<br>
<br>
<div>
I personally felt as if my heart was in a million pieces
that could never be put back together no matter how
many years had passed. With this, my life as a twinless twin began. After countless support groups for teens
and children who lost a loved one, in April 2018, my mom
finally found an organization called Twinless Twins
Support Group International. As I attended my first
regional meeting, I was a nervous mess with my heart
pounding and my mind bubbling over with thoughts of
“what if’s”. What if they didn’t like me? What if going to
this was a mistake? But in the end, it was not a mistake
even though I was the youngest person there by about
15-20 years. I had never felt more comfortable in a
support group before. At the meeting it was mentioned
there was a national conference in July 2018 for the
organization and that I could get a scholarship to
attend. Instantly my mind went to the thought of “What
if there were people who were closer to my age there?”
I didn’t give my parents a choice; I was going to Ohio for
the conference!<br>
<br>
In July, we packed our bags and drove to meet up with
Michael, twin to Howard, another twinless twin. Being 15
I couldn’t drive so I set up camp in the back seat of the
car. I had my blanket and pillow (which I always take
with me on a long car ride), my headphones to listen to
music, my iPad, some books, and more. My day in the
car consisted of playing on my iPad, listening to music
and reading. The time passed so fast it was like we were
cheetahs sprinting through the savannah. Before we
knew it, we were in Columbus, Ohio.<br>
<br>
The closer we got to the hotel where we were staying
the more the “what if’s” came back. My mother had
found out I wasn’t going to be the youngest one at the
conference (but more about that later). Once we pulled
into the hotel everyone got out and we all dragged our
tired bodies into the hotel to check in. After getting
settled in our room my mom and I went to eat dinner
at a Mexican restaurant. We had dinner with other
twinless twins also attending the conference.<br>
<br>
I noticed I was the youngest person at dinner and
thought “Go figure”, but then in walked Lee Ann, twin to
Jamie. Her brunette hair, cut just above her shoulders,
looked like hot chocolate after I had put the milk in...
Her bubbly personality and age made me a bit more
comfortable. After the food got there (which took so long
because we were such a big party) my mom and I went
back to our hotel room to sleep and just decompress
after the overwhelming evening I personally thought
we had.<br>
<br>
The next day we needed something to do before the
conference started. Michael was going to be busy so
hanging out with him was not an option. Lee Ann said
she was planning on going to the zoo. Now that was
something I would not pass up! (Being a huge animal enthusiast and plus the zoo where I live in Baltimore is
pretty bad). Once at the zoo I got a chance to animal
geek out! All the animals were gorgeous! We went to
see the elephants for my mom, the big cats for Lee
Ann, and the red panda for me. Unfortunately, that cute
little panda was not out and about that day. I had to
practically be dragged out of the zoo.<br>
<br>
Once back at the hotel, Lee Ann, my mom and I all went
back to our rooms to get ready for the conference to
start by attending the First Time Attendees Gathering
and Dessert Reception. Being first timers, Lee Ann, my
mom and I got to the reception 15 minutes early. After
checking in, Lee Ann went off with some other twins
she connected with. I sat at a table with my mom, I
was so anxious my heart was pounding, I could barely
think straight. “Deep breaths Becca. You all have
something in common. You will be fine”. I gave myself
some reassurance in my head to calm my hammering
heart and the anxiety that made it feel like I couldn’t
breathe. That’s when Beth, twin to Mary Fae, walked in.
She appeared to be a few years younger than me. “Do
you want to go talk to her?” my mom asked.<br>
<br>
Did I want to go talk to her? She seemed so overwhelmed,
just like me. Beth had blond hair that reminded me of
wheat under the spring or summer sun. She reminded
me so much of myself in a new place. “No, I want to
give it a few minutes. She looks so uncomfortable,” I
responded. Then, after about 5 minutes, Beth and her
mom came over to our table. A woman with brown
eyes and cocoa powder hair came up to us and said, “Hi,
I’m Brandi and this is my daughter Beth.” I then heard a
soft “Hi, I’m Marci” my mom said, shaking Brandi’s hand.
“Becca” was all I said while shaking hands.<br>
<br>
After a few minutes of getting dessert and talking, Beth
and I decided to go sit in the lobby of the hotel and talk.
Beth is a shy girl until she warms up to you, but once
she warms up and starts to trust you she becomes a
happy, easygoing 12-year-old. After about a half an
hour, our moms came out and mentioned that we
would see each other tomorrow. It was time for bed.
Once we gave a hug to one another, my mom and I
went up to our room.<br>
<br>
It was official, I liked this. It was nice. There was a homey,
warm, welcoming feeling at this conference. It was
like the feeling you get when you smell chocolate chip
cookies in your house. Or the feeling you get when you
bite into that warm cookie and it practically melts in
your mouth with the chocolate chips still warm.<br>
<br>
Day 2 of the conference consisted of a few breakout
sessions, a guest speaker and a time to tell your story. I
told my story (here’s a hint you already read it up top).
As I told my story, I started crying and once I finished
people clapped. I know clapping was the polite thing to
do but it still confused me as to why they were clapping.
We all had lost our twins, so we are all just as strong
as each other. Therefore, they should be applauding
themselves if they are applauding me.<br>
<br>
In April 2019, I will be attending the Mid-Atlantic spring
meeting with my mother and father as my support
people. Then comes July, when the three of us will fly out
to Huntsville for the 2019 conference. I can’t wait to see
Beth; Diana, twin to Kathleen; Phillip, twin to Aaron; Lee
Ann; Rachel, twin to Rebecca; and Elliott, twin to Andrew.
Hanging out with all of my twinless twin friends is home. </div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-53985609525499040982019-07-04T11:08:00.002-04:002019-07-04T11:08:23.561-04:00He Lived Life Big...Rest Easy<span style="font-family: "arial" , "helvetica" , sans-serif;">Diagnosed with kidney cancer approximately 12-years ago with a 5-year-relative survival rate. For the past 10-years, it has been stage 4. You fought. You lived those years the same way you lived the years before...big. You loved family and friends more than anything and in your own way made sure they knew it, just as family and friends loved you. The last few months were hard for many, especially you and those close. We all knew the end was near. Back on June 9, 2019, I published the post "Keep Your Eye On The Ball". I didn't use your name but I know those close knew it was you, beloved husband, father, brother, uncle, grandfather, son and friend, David H. Kaplan, of blessed memory. I visited, just a few times over the last months. In our own way we said good bye, I knew I was saying good bye when I asked you to do me a favor...you are the first to go, to be with him.... I didn't realize until your funeral the exact time you were saying good bye. We were sitting at your kitchen table across from each other. I believe is was Passover, I brought something to the house for JoAnne or Julie (I can't remember exactly what and it really doesn't matter), you were having some matzoh ball soup. It was so hard for you to eat at that point, not enjoyable for you anymore, but somehow you managed to take a few bites and sips. Talking about much of nothing, at least at the time that is what I thought, you asked me how driving was going with Becca. I told you we weren't even out of parking lots yet, taking it slow mainly because school and other activities were busy as the year was coming to an end. You started telling me about teaching Julie to drive, I asked you if you wanted to take over and teach Becca, both of us knowing it wasn't possible. You were saying your good-bye and asking questions about the things you were going to miss out on after you passed. You knew we were all going to continue to live, some easier than others, but some how we would.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwuNbYr6iA_jWj6zyE0lysu-qnnuFLBsCDRPWi4zl_ymeDRbUci8yeNxanB_ruGrSP8Fugn7AhyD1SY4W8CbmgS_opMfVHvRYmKN8q4TSGI_15af_2eETscbYpJN4U1YWs71z4ETc1B5w/s1600/Screenshot_20190704-110102_Chrome.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="585" data-original-width="701" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwuNbYr6iA_jWj6zyE0lysu-qnnuFLBsCDRPWi4zl_ymeDRbUci8yeNxanB_ruGrSP8Fugn7AhyD1SY4W8CbmgS_opMfVHvRYmKN8q4TSGI_15af_2eETscbYpJN4U1YWs71z4ETc1B5w/s320/Screenshot_20190704-110102_Chrome.jpg" width="320" /></span></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">The past few months were hard for Brian, Becca and I, watching and knowing...brought back many memories of 3 years ago. We shed our tears at home with each other, at least until June 23, 2019, the day we laid you to rest, just a few plots away from our beloved, Ian. While we have been to the cemetery many times over the last 3 years to visit Ian or to help others bury a loved one, being at the cemetery that day sucked. </span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
</span><br />
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Burial is the last physical act of kindness that we do for our departed loved ones. We have cared for them in their lifetimes, and now we care for them in their passing by ensuring they have a proper Jewish burial. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">As part of the Jewish tradition, filling the grave is the most striking part of a Jewish funeral, surely the most painful, and perhaps ultimately the most healing. Just prior to filling the grave, the Rabbi recites:</span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Al mekomo yavo veshalom </i>(for a man) - May ______ go to his place in peace.</span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Al mekomah tavo veshalom </i>(for a woman) - May _____ go to her place in peace.</span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">The rabbi then hands one of the principal mourners a trowel or simply gestures for him or her to pick up the shovel placed beside or in a pile of newly dug earth. Children, parents, siblings, and spouse come forward, taking turns dropping a little of the soil onto the coffin. According to one custom, mourners use the back of the shovel at first, to demonstrate reluctance. In some communities, each mourner replace the shovel back in the earth rather than hand it from one person to the next - a practice probably born of the idea that death is somehow contagious. However, others find it comforting to give the spade to the next person, acknowledging the shared nature of the task. After the immediate family has symbolically buried their loved one, other come forward to take a turn with the shovel.... The soul of the departed, watching over their own funeral, derives comfort from the fact that they were laid to eternal rest by those who love them.</span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">As I took the <span style="text-align: center;">trowel</span> from the pile of earth helping to return Uncle David to the nourising and living earth, I asked him to take care of Ian, to have some drinks with him, perhaps even smoke a little (not cigarettes). Afterall, they both deserved to party some. I believe Ian, as well as my Nana and Poppy (my mom's, Aunt Leslie's and Uncle David's parents) welcomed him with open arms and showed him the ropes. I can only imagine after being shown the ropes, Uncle David went and did his own thing, as he always did.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Ian, lived life big as well. Now Uncle David and Ian are living life big together....in Heaven.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<a name='more'></a><br />
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">IN MY LIFE</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">song by The Beatles</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">There are places I'll remember</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">All my life, though some have changed</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Some forever, not for better</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Some have gone, and some remain</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">All these places have their moments</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">With lovers and friends, I still can recall</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Some are dead, and some are living</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In my life, I've loved them all</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">But of all these friends and lovers</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">There is no one compares with you</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">And these memories lose their meaning</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">When I think of love as something new</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Though I know I'll never lose affection</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">For people and things that went before</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I know I'll often stop and think about them</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In my life, I'll love you more</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Though I know I'll never lose affection</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">For people and things that went before</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I know I'll often stop and think about them</span></div>
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In my life, I'll love you more</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div style="text-align: right;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">In my life I love you more</span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">
</span>Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-29541927610090191962019-07-03T22:16:00.000-04:002019-07-04T11:07:05.309-04:00The Days Our Lives Changed...<div style="text-align: right;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw9M2Lt91lLWmEEddAtQN5IcDKz5f89bpC28CyR4Xqvc9ZPvIhvfj-0lNuXn9RheUWhDg_WTm8dTpoRLnDmT5J4BrmrmQIDFLM9IbWnyQ6TUHeCl_Z8QWqJHz0Mc10uF6OnBeozBNmYJM/s1600/Screenshot_20190704-082303_Facebook.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="666" data-original-width="1056" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw9M2Lt91lLWmEEddAtQN5IcDKz5f89bpC28CyR4Xqvc9ZPvIhvfj-0lNuXn9RheUWhDg_WTm8dTpoRLnDmT5J4BrmrmQIDFLM9IbWnyQ6TUHeCl_Z8QWqJHz0Mc10uF6OnBeozBNmYJM/s320/Screenshot_20190704-082303_Facebook.jpg" width="320" /></a></div>
10 years ago our lives changed, 7 years ago our lives changed, each day in between our lives changed, each day before and each day after. As July 4th is upon us, the memories come back. 10 years ago, Ian showed his first major signs of disease progression where we knew something major was going on. What exactly that something major was would not come out until 3 years later, 7 years ago we found out what that was...Pontocerebellar Hypoplasia Type 1A. There are good memories of July 4th weekends as well ... Coming home from seeing fireworks, the twins in the backseat, all you hear is Ian scream, I did it, I did it! What did he do; he pulled out his tooth! Then we hear, Oh, no! What happened for Ian to say "Oh, no"? After he pulled out his tooth, in all of his excitment, he dropped his tooth. When we got home, he made us look for it. We did not find it and had a very sad Ian on our hands who was afraid that the tooth fairy would not come if there was not tooth under his pillow. We told him that we would make sure to let the tooth fairy know and she would still come regardles of the tooth being under his pillow. Yes, she came that night. And I do believe that was his first tooth loss. Another memory comes to mind as I am typing this, watching fireworks with family and friends, seeing Becca and Ian sitting on a towel in the grass with Mackenzie and Josh having their arms around each other. Oh but there are the memories of the fear of that time 10 years ago and 7 years ago. I'm sure that fear will come and go over the years as July 4th comes and goes every year. I also know that new memories will come as time goes on. But I will always...<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja6swfVcvfXCOoId0aan6GqOCcjWhrLAsE8iH3ZFZEUAbtwY2m2q2dr-lK9FuE52dA5FpJPBRLXNedcookzTG2IZCS_MgkFADMWGNCHLhRKwQiGf3n8UpfLvChUvD-Zro3JlMbWNnYpnA/s1600/Screenshot_20190703-215836_Facebook.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1279" data-original-width="858" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja6swfVcvfXCOoId0aan6GqOCcjWhrLAsE8iH3ZFZEUAbtwY2m2q2dr-lK9FuE52dA5FpJPBRLXNedcookzTG2IZCS_MgkFADMWGNCHLhRKwQiGf3n8UpfLvChUvD-Zro3JlMbWNnYpnA/s320/Screenshot_20190703-215836_Facebook.jpg" width="214" /></a></div>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"></span><br />
<a name='more'></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "times new roman"; text-align: right;"><a href="https://puckermob.com/">Pucker Mob</a></span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Without you in</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> my arms, I feel an emptiness in my soul. I find myself searching the crowds for your face -- I know it's an impossibility, but I cannot help myself. -- Nicholas Sparks</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Not a day goes by that I don't think about you. You're often on my mind and I can't help but wonder how different life would be if you were still with walking, breathing, living on earth with us. I miss you so much. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I think about all the things we could be doing together, the special moments we could be sharing and the new memories we could be creating. I wonder about the different path our lives would be on if you were still around and it breaks me inside to realize it's all wishful thinking.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">My heart is still foreign to the idea of not having you around.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I catch myself trying to call you, an involuntary reaction to my desperate need of not wanting to accept that you're gone. It hurts, it burns my soul and I try to keep it together, but the truth is, I carry a heavy heart and I don't know if I'll ever recover.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I know that life should go on and that with time the pain will subside. I know you wouldn't want me to live my life in grief and pain but I can't help to shed tears when our memories still feel so recent and so real. I'm just not ready to go on with my life while I still carry you so close to my heart. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Maybe I'm afraid to forget every single second we spent together, the sound of your voice, your laugh and even the deepness of your eyes. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Even if I don't think that could ever be possible, I fear that if I ever come to terms with your departure, the memory of you will fade away. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">So, I'm sorry I can't move on, I'm sorry I cry at night and hope for the impossible. I can't turn back time and bring you back, but at least I can try to retain every single memory of you fresh in mind for longer. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I have to believe that you're watching me from heaven. I'd like to think that you're an angel protecting and guarding us all. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I promise to continue living my life have honoring yours. Whatever I do and wherever I go, I'll always feel your sparkle in my heart. I hope to make you proud and that whenever you are, you're able to feel how much I remember you and love you. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiisi6Ps8Sr70_1VycDAEhnxS2MbnNrgm7QECeBp2R-RG0QvYwJggfD-2hu-BI_CZtr0a5YTdpZQV-oHO2KGBemHSmIL2XP0yotmvHMxfuQ0jeSO4oj2slAthsASkqkBT3KXfWn6tfdlZ0/s1600/Screenshot_20190704-082146_Facebook.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiisi6Ps8Sr70_1VycDAEhnxS2MbnNrgm7QECeBp2R-RG0QvYwJggfD-2hu-BI_CZtr0a5YTdpZQV-oHO2KGBemHSmIL2XP0yotmvHMxfuQ0jeSO4oj2slAthsASkqkBT3KXfWn6tfdlZ0/s320/Screenshot_20190704-082146_Facebook.jpg" width="180" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhOGgCp24aeNbtp0SWVgHTk3GFWfTBF1GZOVhDTeKZrvKphjmeGw1-0q3sAly45CqJlc-e68qA36CUpL5Svg_1N4bIlGNYSyJ1W8zzgCILKLrhysl7uBJK2cMSRxZZZnuLzPE713dJRzE/s1600/FB_IMG_1562205493185.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhOGgCp24aeNbtp0SWVgHTk3GFWfTBF1GZOVhDTeKZrvKphjmeGw1-0q3sAly45CqJlc-e68qA36CUpL5Svg_1N4bIlGNYSyJ1W8zzgCILKLrhysl7uBJK2cMSRxZZZnuLzPE713dJRzE/s320/FB_IMG_1562205493185.jpg" width="320" /></a></div>
<br />Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0tag:blogger.com,1999:blog-8015897714584520167.post-26295830858223593122019-06-20T17:00:00.000-04:002019-06-20T17:00:06.286-04:0015 Memes That Nail What It's Like Working With a Chronic Illness<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: right;">
<a href="https://themighty.com/2018/02/memes-working-chronic-illness/?utm_source=newsletter_chronic_illness&utm_medium=email&utm_campaign=MightyTipLine" style="text-decoration: none;"><span style="-webkit-text-decoration-skip: none; background-color: transparent; color: #1155cc; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration-skip-ink: none; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">The Mighty</span></a></div>
<b id="docs-internal-guid-019f99ed-7fff-0aa2-f858-2cd57c9d2059" style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; font-family: Montserrat, sans-serif; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="color: red;">After reading and seeing these memes, I decided this doesn't just apply to having to work with a chronic illness. I can see these applying to Ian as he had to go to school and just do things on a daily basis. He may not have known or understood what he was feeling and how to explain it at the time...but I would venture to say that this is it. In addition, I know that over the years of caring for Ian, I and I'm sure Brian and Becca at times, felt all of these as well. </span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Montserrat,sans-serif; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><br /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Montserrat,sans-serif; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">Living with a chronic illness can often feel like a full-time job in itself, and many </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">of those who struggle with illness work at a paid job as well. Working can have </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">many benefits, such as money (of course), but also health insurance, social </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">interaction, personal development and a sense of responsibility. For some, work </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">may be an important part of your identity or give you a chance to do something </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">you’re passionate about. But it can be difficult to keep up with all the responsibilities </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">and expectations of your job when you’re chronically ill and battling symptoms daily. </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">You may struggle to complete tasks because of pain, fatigue or brain fog, or find that y</span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">our job takes up to 100 percent of your energy - leaving you unable to participate in </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">other areas of life as much as you would like.</span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Montserrat,sans-serif; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">Every chronic illness warrior’s situation is unique, and we all have different and </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">valid reasons for working or not working - whether this decision is made due to </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">choice or necessity. Just because someone works (whether it’s part-time or full-time) </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">that doesn’t necessarily mean they’re “fine” or “not really sick.”</span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Montserrat,sans-serif; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">Life with chronic illness can be tough, and working with a chronic illness can be </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">quite challenging. Sometimes the best way to cope with all the stress and </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">exhaustion though is just to laugh. So, if you’re in need of a little humor to help you get</span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;"> through work and any symptoms you’re dealing with today, here are some memes</span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;"> </span><span style="font-family: Montserrat, sans-serif; font-size: 11pt; white-space: pre-wrap;">you might enjoy.</span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Montserrat,sans-serif; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When your symptoms are flaring but you still have to go to work:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="375" src="https://lh3.googleusercontent.com/jebC1VakvwM86wlDWkOirxKRFi8xUtneBfKjEbhAAHjYyeL_e4FSaPDhyU03f44EFPyY-H4QJ5I70rTMA9s3Ye6IdoSLOgSeQ5F3fRxDTAlPwVWx53Sfis1zkThMxzL6tn-UpoCt" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When you’re too fatigued and brain-fogged to put together a nice outfit:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="390" src="https://lh5.googleusercontent.com/qMI1OXkQ7GRLBdgJLjPtzHG-kc2RSxa6tbLcAREqm3zyrn4Os6I6WgRC-xm7OgjSomQ5RmMHwWIhBHIqIMfiGO9IPkeB_pO0dIeWGMpiYhV6jIvSk-zG40eJBLzMBOIAsb0G6s9B" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When every minute feels like an eternity:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="279" src="https://lh6.googleusercontent.com/y0LiAd-baZfgiAyb-KQ2btjH7F7NM1bQb4K9k6T9s8eagbjqAT8YJTiBYjvopDXVm-3wGz65BdOUgLFJYdO4TY1sEQldiAHiYCEAgB4kkyBaU1NfKiZJSyX7i53CNT_8bFHlGD45" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When the brain fog is hitting hard:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="208" src="https://lh6.googleusercontent.com/gRuuYuE7UB_4hwioQwoni5j4pQHuCB8DWPD9TTQN-V2gsTLXSrksuwcYyNi1Zilztllbdjm9gdifk4r5-EP7R5qydMc-6Mglt39VvpulT0KhqE0Wy3ciEBafeQQApjZbrGMvZONi" style="border: none;" width="350" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When you’re barely functioning but still have a job to do:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="400" src="https://lh3.googleusercontent.com/diKHu3ydcoME2N5RDLKEI5VXEGf9H3bhDEnUGGegomYM7ZqOexWsS28NDNnvW2C6ub40PdNRV8baR3MQDJP51doZluSXBa3WTEl_X0LehBpK03Jpm_OC2RKzakx_PvxdoOhC1vKR" style="border: none;" width="355" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When you feel even more tired after taking a nap in your car at lunch:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="379" src="https://lh6.googleusercontent.com/X-YLkMfgtRv0LY_Kpdfb6BXVT-HD5CsWN21rx1kboR-vvwcPzVJc1C7qveJXNOmd4Bb001w5Pp8q7l0aG16nU5Es_IMpmKFsgYshnrwStiY9_c_ft7c94JbmlCBvJ2fqivzYuLDR" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When people think because you work you must be “fine”:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="268" src="https://lh3.googleusercontent.com/3X2LdqrQoYDj5VTol5Y10tsCVKyVHkoUiNBQC2YhgWC8Jsw4kiEXpKiu0PplU44jZuWmJYuy7wi_Z-T5JYHdQVP4el_Sob6XRq5gs601cRbcMxPP4MoY-lkM_gdthdTu4q2PVYbh" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When your symptoms kept you up all night:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="400" src="https://lh5.googleusercontent.com/YtmeGnsr2Au1M7m79qGjry_v2EULXtNE0Y4D5wcvOtxy1heXYej4UeO5WZjKESqwAFEqvLENHIlhWUAWKeF-eMkqKHyefwixJqWRGuV6N1CwoakmMjr2gt7-OFcmHbpCTRWhJGqz" style="border: none;" width="395" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When your illness results in frequent trips to the bathroom:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="302" src="https://lh5.googleusercontent.com/Suqfdk_l1BJ_DULO8fMRzFU99GtAi6rhIS2J4p4n0uYMYXGxznEOmVLFmmDMjK0GOAaNv2wzCwye_XDMM_i2xILO8vpiHx6vkON_s2e5-3L2GHoTDPe2EwRj9gBRKWxHjmfE6DjA" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When you’re counting down the minutes until you can be reunited with your bed: </span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="391" src="https://lh4.googleusercontent.com/BgX9fmYZu8nTKnGiDHgwGhLwClULmHuEPeFmtSPtjJSpgzVebKUTRO3_tu6QyLQVXRRdH4nPc8EwrS-zuLbRtDsbk4b3PNxNl2QdZs4isznAHnaMyqR_0AlZaxJUj0swGxR9Wmbj" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When it’s time for work but it also hurts to move:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="400" src="https://lh4.googleusercontent.com/wUYYkUvDRgS_blR-DK8fVUwibI4CodTCkyxaEOfTiuZA_ieeJCir21mzeiBI5jdqX7B4LrreVR12820TrNCfaQShIIJYpjjh54K2YxxqdR61H4D4FURm4qsqZ3NASxoEWaxiexkh" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When work takes 100 percent of your energy and you just don’t have the spoon to cook:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="209" src="https://lh4.googleusercontent.com/c67IwmTeVT3j6vdQrC2VvL_iYaFZIlMM-AHRgKWqFdih0GLUcXaK6JLQk6R7T3wwU6BxDj3v6KSlmpQxXscWt1-DK0Uzl0J5-osheuvO_fFKCBLLS4GnAoWwXXC3YJ82u_DNXXxK" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When your immune system doesn’t function at full capacity:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="396" src="https://lh4.googleusercontent.com/vAsmjmJjxLhY21mf-IDi3HcPf8mnQQ5rON4XDJ_k2vitFfvLMy-2nAUK4GzqpdhiQBP3P2sGwWGCix1CJoybr4cEp7JcapLvh7jNaKfJQt8Vl8ZSqSc5QJ3gi4sTnHlqgs5xz0mv" style="border: none;" width="400" /></span></div>
<b style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When you’re feeling sick at work but still have to put on a smile:</span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="397" src="https://lh6.googleusercontent.com/hw6w02cGqwMK9kpLA6sC6gouX35KMWc8Z8G-a_Hi5R3laJGh2QUCDQQiO_YjziYW4Rz160wI_XpfakbFUzxIeogho58gHnoePeVkYfDNxTgd1KKOfaHA5isfOK_9xpt7K02eRmHV" style="border: none;" width="400" /></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;">When you make it through another work day and get to collapse in bed:</span></div>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><img height="398" src="https://lh4.googleusercontent.com/6LV_UPjL_gy4PBZExThPaPHA0S41UhW_O_-uZdxvXarqYglMbvSUxgbQNygLZFzjbs27yXUXvAv2_0C3Z_Dhf7xHX_RAFzQX4Zsj8kUtfePKHXtDs1vnsrUnUTMoqXZz8escK6Z6" style="border: none;" width="400" /></span></div>
<div>
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap; white-space: pre;"><br /></span></div>
Marci Scherhttp://www.blogger.com/profile/04587914924027399846noreply@blogger.com0