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Saturday, December 26, 2015

Mitzvah Day

On Friday, December 25, 2015, Becca, Brian and I joined hundreds of others at one of the sites for mitzvah day. The mitzvah rooms offered dozens of fun and meaningful volunteer projects hosted by community groups benefiting those in the Baltimore area. We participated with Casey Cares in rolling pajamas for hundreds of critically ill chiller who are in local hospitals. Casey Cares mission is to provide ongoing, uplifting programs with a special touch to critically ill children and their families. We have been one of those families for the past four years. While we can't participate in many of the programs, they find ways to bring some things to us in the home, such as movie and pizza night. We hope the little bit we did yesterday lets them know how important they are in our lives. Thank you Casey Cares for all you do.


Friday, December 18, 2015

An Update

So I've been posting lately but not on how we are all doing. Over all we are holding our own. Taking everything one day at a time during a very hard time of year for people with neuromuscular diseases. Many people have asked how Ian is doing...over all ok. We have seen small signs of disease progression.  He is harder to understand, not in that his voice is softer, more in that he is having a harder time with certain words and letters. The "s" is the main one that comes to mind. Getting the words "side" and "yes" out have become difficult for him. I would say 5 out of 7 days he is taking a nap as well as going to sleep by 9:15 (yup that's early for him). He's also having a hard time with the loss of Joey, we are taking that one day at a time and helping him get through that.

Becca is doing well. Currently, her grades are 5 A's and 2 B's. She just had a math test and was the only one to get an A. So proud of her. Girl scouts is going well. About 3 months ago she started horseback riding, and last week she jumped for the 1st time. She was ecstatic and we couldn't be more proud of how she is doing. She seems to be handling the loss of Joey ok.

As for Brian and I, we are doing ok. That seems to be how I am describing everything, "ok". I guess when you consider everything we go through on a daily basis, we are doing ok. Can't be doing great,  afterall, we do have 2 pre-teens in the house, who both have the attitudes. All the while we are slowing watching one of them die...so we are doing ok.

As 2016 approaches, we will continue to do ok and grieve the things we need to as we treasure yesterday, dream of tomorrow but live for today.

Wednesday, December 16, 2015

24 Things People With Rare Diseases Wish Others Understood

Taken from http://themighty.com/

Right now an estimated 30 million Americans live with a rare disease. In the U.S., nearly 7,000 diseases are considered rare, and for most no cure exists and few (if any) effective treatments are available, according to the National Organization of Rare Disorders (NORD).

From the exhaustion of a diagnosis journey to the crippling feeling of being alone, those with rare diseases and their families face a lot of unique challenges that may be difficult for others to understand.

The Mighty teamed up with NORD to ask their Facebook community what they wish others understood about their experiences. Here's what they had to say:


  1. I'd be more than happy to educate you if you ask about [my condition] rather than question it's existence.  -Katie DeMore
  2. Most doctors have never heard or seen a patient with the disease.  -Nancy Reeder Martin
  3. Smiling doesn't mean I'm suddenly healed. It just means I'm choosing to stay as positive through the pain as possible.  -Evan Mundine
  4. Do not give advice to people with rare diseases. I know more about my disease than my own doctor does so please think before attempting to give advice.  -Brittney Peebles
  5. People who hear you have a condition should never say, "Well at least it's not cancer."  -Cheryl Olenczak
  6. They are only "rare" until they happen to you or a loved one.  -Bob Longhorn
  7. Just because what you're experiencing doesn't fit into an easily diagnosable box doesn't mean you should be easily dismissed and overlooked.  -Megan Wirts
  8. Fundraising is a big deal because government funding is scarce or nonexistent.  -Rebecca Brewster
  9. I wish people wouldn't say, "Ahhh, I hope you feel better soon" like it's the flu!  -Lauri Morris
  10. Nothing about rare diseases is simple -- not a diagnosis, not the daily care, not the long term. If you really want to know about my child, it's not a one sentence answer.  -Elizabeth Grehl Breden
  11. Physicians need to understand that we likely know more about our disease than they do. They need to actually listen to us! Be compassionate and understanding.  -Renee Walchak L'Ecuyer
  12. It feels incredibly isolating to want to help your child and not be able to because even the doctors don't know what's wrong. To not have someone who understands because there is nobody like your child. To not be able to have a treatment plan because there is no diagnosis.  -Susie Stretton
  13. People can just be a good friend and listen and be there for you; they don't have to try to relate by saying they know someone who has the same thing. Hence the word "rare".  -Jill Ritchey
  14. Sometimes you have a name that everyone knows (i.e. epilepsy), but a rare presentation of it (i.e. Lennox Gastaut syndrome) that means you don't qualify for studies and the meds don't work. It's a terribly isolating and frustrating place to be in medically, and the generic name doesn't give the correct picture to the public.  -Kelly Shaughnessy Morris
  15. One in a million' means it's possible. And those "ones" need to count.  -Hailey Remigio
  16. You may never really get a full diagnosis and/or prognosis.  -Jessica Taylor
  17. I wish people who can't see your illness wouldn't judge.  - Daen Dawneedo Frascati
  18. It can't be fixed by a simple visit to the doctor. There isn't a drug or something that can be given to cure it. It's always there and without research it always will be.  -Sylvia Marsden
  19. To be able to talk to and meet fellow patients and have a conversation about our disorder without having to try to explain what it is is extremely valuable.  -Neil Smith
  20. Some of your coworkers, neighbors, and friends who appear to be living "normal" productive lives are also living with rare disorders. I bet most people know (often without realizing it) at least one person who lives with a rare disorder.  -Lisa McClellan Lucius
  21. We enjoy the confused look on [your] faces when we tell [you] the name of our illness/es! "Neuromye-what?"  -Helen Lear
  22. Just because a doctor/pediatrician/ER staff hasn't heard of a disorder doesn't mean it doesn't exist.  -Brittany Lazechko Alley
  23. Our caregivers go through so many sacrifices caring for us! It's a thankless job and I know I don't say "thank you," but I would not be where I am without them!  -Mary Lou Briggs
  24. You will do and learn things you never thought possible. "Hope" means so much more since sometimes that is all you have.  -Nicole Vallier

Tuesday, December 15, 2015

Touch My Heart

Child
Touch my nose, my lips, my eyes
with your small hands.
Then touch my arms and chest.

Feel their shape

how real they are.

Now, touch my love.

No, not my chest or arms or lips.
You are puzzled.
How is one to touch love
and where is its place.

Love is not here or there

But who would
deny its reality.

Where does love reside

if it cannot be pointed to 
as with other limbs.

Is it less real than my chin?

If anything, love is sharper, harder, softer,
warmer than bodily things, objects I can touch.

There are matters not subject to the senses

taste, sound, smell, sight, touch
Matters elusive to definition
yet known without doubt.

Known to make us cry and laugh

to move us to unimagined heights
to courage and self-sacrifice.

Experiences - like love or G-D

Cannot be fingered, placed or poked.
Of such things
it is wiser to ask
not where but when.

Don't ask where is love

don't ask where is G-D
ask when is love
and when is G-d.

-Rabbi Harold Schulwies, z"l

Monday, December 14, 2015

A Huge Thank You Chai Lifeline

Over the past few months, Chai Lifeline has done quite a few things for us.

First they designed a shutterfly book for Ian, covering his 3 years of Camp Simcha Special. There were pictures I had not seen over the years, something we will have forever to cherish the memories he has had at camp.

Ian going through the Welcome Tunnel his 1st year of camp.


Ian having fun.....well maybe.

Ian, with some of the guys and medical staff, getting ready to go for a swim....he looks thrilled...but when all was said and done had a great time. And even went in a 2nd time.


After a few months of planning, about 3 weeks ago, Brian and I got a wonderful night away at the Gramercy Mansion. Adena arranged everything, even care for Ian, Danny came into town to watch him. It was a quiet night of watching movies without worrying about the kids and who was taking care of them. We knew they were in good hands. Entertainment was provided for Ian, just for him, oh we know how he loved that. Becca had a great time at a friends sleepover party or she would have been home with Chai Lifeline as well.

Hanukkah has come and gone, hard to believe another year has past. But not without the wonderful Chai Lifeline Hanukkah Party. All the Baltimore and DC families were invited to the World Trade Center in Baltimore for some dancing, arts and crafts and goodies. Unfortunately, Ian was not feeling well that day so he stayed home with Brian and Becca and I went. Each family got a bag full of gifts which were picked out just for them. Governor Larry Hogan was there to help all of us celebrate. Becca and I even got on the dance floor for a little bit. 

Oh how we love our chai lifeline family. Thank you for all you do. 

Saturday, December 12, 2015

Wii

What's this Wii thing all about? The Spiderman game ...is the best!

Bling, Bling, Bling

I found these shiny things laying around, don't they look good on me.

Wednesday, December 9, 2015

I WANT COFFEE

What's this coffee thing about? 

Tuesday, December 8, 2015

Anyone Have the Time?


Isaac got into Brian's watches last night....for those of you who really know...you don't play with Daddy's watches....


Monday, December 7, 2015

Isaac's Back

Isaac is back
 On the 1st night he decided he wanted to go to school with Becca. Well that did not happen.  He stayed home where Ian could make sure he stayed out of trouble. 

Thursday, December 3, 2015

Joey 1998 - 2015

Our beloved Joey went to heaven on Friday, December 4, 2015. She gave us 16 years of unconditional love. From a spunky puppy, to a vibrant adult to a frail elder dog, she was always there, knowing the right time to come give hugs and kisses. She will forever be our Joey.

Thursday, November 26, 2015

Thankful

Thanksgiving has come and gone, we had much to be thankful for that day. But wait why do we have to be thankful on only Thanksgiving, we are thankful everyday. As I sit here and listen to Ian and his friend, Ryan, watch Willy Wonka and the Chocolate Factory, I continue to think about all there is to be grateful for. The kids in the movie don't seem to be grateful when in reality they have much to be grateful for....by the end of the movie Charlie seems to get it. Thankful for all there is out there, all the people in the world (their village). Everyday we are thankful for our village, thankful for those who realize we are always in need, the needs just differ depending on what is going on; thankful for those who realize their limitations and give when and what they can; thankful for each day, even though I get frustrated, annoyed, angry, sad, lonely at times because with each of those comes happiness, joy, love, laughter, fulfillment and gratitude. We know one day our lives will change and given time we will still find things to be thankful for, until then we will continue to treasure, dream and live.  

Tuesday, November 17, 2015

Mystery on Camp Lookout Mountain by: Ian Scher

It's the first day of our weekend camp. The old gang is back. There's Ian, Becca, Marci, Brian, Tee, and Donna; along with all the other campers. The weather is good today, but we will have to deal with fog tomorrow during most of our activities. Right now Ian and Marci have to get all the campers settled on so they can unpack. Becca, Donna and Tee are team captains this year. Brian is no longer in charge of activities because he's too competitive. He is responsible for keeping the equipment clean and he's not happy. Dinner has been served. All the campers are off to bed to prepare for tomorrow's events. It's Saturday, let the games begin. The first event is the canoe race. It was a close race until Becca's team canoe flooded. There was a small hole on the side that Brian said he never saw. The next activity was the Archery competition. Donna's teams' target kept falling because no one's arrow could penetrate the target. Later, it was discovered that the target was magnetic. The hiking trail was the last event. Every camper was to carry a 5 pound backpack for 2 miles. Tee's team came in last place because all of them complained about back pain. Each team lost one of the major competitons. How did that happen? It's a mystery. How did the new canoe get a hole? Why was one teams' target magnet when they're supposed to be wooden? What made one teams' back hurt so bad, they couldn't finish the trail? Is it a coincidence?  Who was responsible for this? Wait a minute! It has to be Brian. He was the one who checked each canoe, set up the targets, and packed the backpacks. Ian and Marci are investigating. They found a little old storage room in the basement of the main cabin. They found a drill, the extra target, and too many rocks. When Ian and Marci met with Brian, he confessed. He didn't like being called the equipment man.

Sunday, November 15, 2015

Rock 'N' Roll Las Vegas Team Lifeline

The day is finally here. All the fundraising, planning, and little bit of training. The pasta party was amazing...the spirit, everyone cheering for Team Lifeline. A few counselors and kids from Camp Simcha were there and they recreated the welcome tunnel, something that is always amazing to see. A video was shown telling what Chai Lifeline means to families, HOPE. The 10k, amazing. Seeing all the people walking/running for different reasons but all the same. There were times when I wanted to quit....the wind and rain made it cold. I didn't quit...I kept thinking about Ian and all he goes through on a daily basis pushed me to keep going. The last mile seemed to take a lot longer then the rest of the race, as Brian said we slowed down. Finally, the finish line was there. One hour and forty minutes after we started. An emotional finish, knowing we did it for Ian and all the kids and their families. As for the after party, well we made it about 10 minutes before heading back to our room to crash. Watch out, we are already talking about Team Lifeline 2016 in Vegas. 

This would not have been possible with out all the people who donated to us a few months ago.  A huge thank you to all of you. Also with out a few special people we could not have done it, Bethany and family as well as our Gilchrist family...thank you all for taking care of the kids. Becca, Bree and Heather for doing 4.2 miles in Baltimore today since they could not be in Vegas with us. 

Hard to believe the day is finally here. 

Ian at the Hotel getting a visit from Becca and a therapy dog.

At the pasta party, gearing up. 

Everyone from Team Lifeline showing the spirit.
Our time at the finish line.
Checking in with Team Lifeline at the end of the race. 
Brian with his metal.
Marci with her metal.
  

Friday, November 13, 2015

The Ultimate Gift by Jim Stovall

There are no words for this book, it is amazing, beyond...THE UNTIMATE GIFT

THE GIFT OF WORK...he who loves his work never labors. ...He loved me enough to make sure that I learned the entire lesson that my Uncle Red planned for the gift of work. I also learned that there is a certain love which comes from doing a job well. When you can step back at the end of a long, hard day and watch the sun set over a straight and strong fence that you built yourself, you get the feeling that everything is right with the world.

THE GIFT OF MONEY...money is nothing more than a tool. It can be a force for good, a force for evil, or simply idle....I learned that loving money leads to a hollow, empty existence. But when you learn how to love people and use money, everything is in its proper perspective. 

THE GIFT OF FRIENDS...it is a wealthy person, indeed, who calculates riches not in gold but in friends. ...I learned that you can love others in a way I has never known. When you just worry about yourself, you are always disappointed. But when you think about others and their well-being first, everything works out best for you and for them. 

THE GIFT OF LEARNING...education is a lifelong journey whose destination expands as you travel.... I discovered that people who have no material things -- but a passion to learn and a true love of learning -- are really quite wealthy. 

THE GIFT OF PROBLEMS....problems can only be avoided by exercising good judgement. Good judgement can only be gained by experiencing life's problems....taught me that obstacles are nothing more than a challenge that we face. ...when you look at your problems through a spirit of love, you realize that there is a grand design to this world, and the problem is given to you for the lesson it will teach you and the better persons it will make you. 

THE GIFT OF FAMILY...some people are born into wonderful families. Others have to find or create them.  Being a member of a family is a priceless privilege which costs nothing but love. ...I learned that families are present when love is present. People can become a family when they add love to their relationships. Without love, families are just a group of people who share the same family tree.

THE GIFT OF LAUGHTER...laughter is good medicine for the soul. Our world is desperately in need of more such medicine. ...in order to love life, you have to enjoy it. And when you can laugh at the good things and the bad, you will begin to feel the love life really has to offer. 

THE GIFT OF DREAMS...faith is all that dreamers need to see into the future....I came to understand that life has been given to us with a sense of love for everything around us. Our passions and dreams and goals are the outward manifestations of the love we feel inside.

THE GIFT OF GIVING....the only way you can truly get more out of life for yourself is to give part of yourself away...when you give out of love, both the giver and the receiver have more than they started with.

THE GIFT OF GRATITUDE....in those times when we yearn to have more in our lives, we should dwell on the things we already have. In doing so, we will often find that our lives are already full to overflowing....we can truly feel and experience love when we remember and enjoy all of the wonderful things we have been given. 

THE GIFT OF A DAY...life as its essence boils down to one day at a time. Today is the day!...if I only had twenty-four hours left to live, I would want to feel and experience as much love as I could and pass it on to as many others as possible. 

What a read....

Wednesday, November 4, 2015

Pre-B'Nei Mitzvah Photos

As you may know, things in our world can take a turn in a second, never knowing what the future holds. In May 2016, our twins will have their B'Nei Mitzvah. We decided to take some photos a little early, not knowing what will be in May. 


Here is a link to all of the Pre-B'Nei Mitzvah Photos


Monday, November 2, 2015

Joey and her Walkabout

Joey...this is the photo I posted on Facebook
Our fur-baby...Joey....decided to go for a walkabout (as we are calling it) on Friday. Around 10:30, she was let out to do her thing. Not sure of the exact timing on everything but Joey decided to "forget" where she lived. Yes we are bad parents, she did not have her collar on nor is she chipped. 11:30 came and went and still no Joey, so I went home for my "lunch" break. Thinking it would be easy to find her...she would be sitting on someone else's front porch. I started driving around the neighborhood. No luck. Decided it was time to walk the neighborhood in order to get in backyards with no fences and near the train tracks and stream. Still no luck. At this point, I decided it was time to post on Facebook...but only on my page. This prompted friends to send me messages saying they were coming to help...plus a few phone calls to other friends and we had our army...my mom, my in-laws, Brian, Heather, Melissa, Mackenzie, Jodi, Annelise and her daughter. Everyone was either driving or walking the neighborhood...calling her name, although not sure if that matter as we are not sure Joey can hear anymore...after all she is a senior dog at 16 years old. During this time, I had made some calls to vets in the area, the human society and the SPCA. No one had seen her. Jodi came in to let us know her status and asked if I had posted on Facebook, yes I had...she asked what about the Reisterstown Page...nope I had not...so up went another post...at this point it was close to 2:15. We had a hit. I remember reading the post..."someone found a dog earlier today who looked like this one"...who, where, more information I asked. The person found the post and did a screen shot...yup it was our Joey....she had managed to make it to one of the local daycare centers on Main Street. For those who don't know the area I would say that it was about a 2 mile walk...didn't know she still had it in her...or maybe she didn't based on the photo of her from Saturday. I called the daycare to find out that she was a one of the worker's homes about a mile from our house. Off Brian and I went....yup it was her...they were waiting for animal control to come get her since she was not chipped and no collar. At 2:30, we walked back in the door with our fur-baby back in hand. Around 3:30, we got a call from the Human Society to let us know someone had found our dog...I explained how through Facebook we had gotten her back so they could take her off the missing list. As you can see from the photo below taken on Saturday, her collar is back on. We are hoping this was a one time incident and Joey is not going to go for another walkabout. A huge thank you to everyone who helped us to find her and for the staff at A Small Wonders Daycare for taking care of her. 
Joey on Saturday...all she did was sleep...her adventure on Friday tuckered her out.

Wednesday, October 28, 2015

Heaven over Hospital

It's all over Facebook, the article on CNN Heaven over Hospital - Dying girl, age 5, makes a choicehttp://www.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-1/index.html
Reading this article hit home...the girl is dying of an incurable disease. She has a rare neurodegenerative illness. She was in and out of the hospital 3 times in a 10 month period getting unimaginable procedures (a suction catheter inserted into her nose, past her throat and into her lungs to clear out the secretions). Initially, she was only affected in her arms and legs, then came the respiratory. After watching their child go through unimaginable procedures, unable to fight back as they were being done because she was too weak to move and only seeing the tears stream down her cheeks, they decided to talk to her about Heaven. At what age do you talk to your dying child about Heaven...where do they want to go Heaven or Hospital (where they know those procedures will continue to happen). You know there is no way they will get better...there is no light at the end of the tunnel when you will have your healthy child back, the light at the end of the tunnel has your child out of pain, running, jumping, cutting, speaking, eating....but they are in Heaven.

Children who go through unimaginable things are wise beyond their years. They get things, things which adults don't sometimes get. I believe they know they are dying, they know there is no getting better...they know what their bodies can and can't take. They know they are getting tired and weaker. You can see it in their eyes, hear it in their voices and the things they say. You see it in their smiles. They may not be able to express it in words but they know and you know.

It has been over a year since Ian's last hospital stay. We have managed to keep him healthy, to keep the nasty out of our home...but we know it will come in again...it's just a matter of time. Since his last hospital stay, we have had a similar talk with Ian about Heaven over Hospital...he gets so much more then you think. He knows what is happening with his body, he knows he is dying, knows he won't come off the vent, knows what he knows. He does not want to go back to the hospital, he doesn't want to be home, he wants to be at the Gilchrist Hotel. He knows heaven over hospital means he will be loved by many others he has not met yet, mommy, daddy and Becca will get there later after him. He knows he will be out of pain, running, jumping, walking, cutting, speaking, eating, swimming all the things he watches others do, all the things he used to do. 

Brian and I have decided to let Ian make this decision, to agree with his wishes...we completely and whole heartly agree with the parents of the little girl. 

Tuesday, October 27, 2015

Emotions Are Up and Down for All of Us

Last night was an emotional night for Ian and Becca. Ian had some Chai Lifeline visitors and was having a great time looking at a photo book they brought over covering his 3 years at Camp Simcha Special. All of the sudden, he got this sad look on his face. He proceeded to tell us that he was not happy. As anyone would do, we asked why...his response was that he was scared of heaven. (This was not the 1st time he has expressed his fear, just the 1st time he has done it with others besides mommy and daddy). How do you answer that...when you know that you are scared as well....scared of what your world will be like once he's in heaven. Well you forget about your fears! The visitors sat there for a little bit and listened to me tell Ian that it was okay to be scared....that when the time was right he would not be scared of Heaven. Over the years, Brian and I have had a few conversations with both kids about this...I have had a few conversations with Tzvi Haber, one of the visitors who was there...so he knew where our family was going when this came up. I proceeded to tell Ian Heaven will be a big party. This is where Tzvi chimed in....he told Ian that when he gets to Heaven there will be a huge tunnel for him to run through on his own with his legs...because they will be working up in Heaven, just like at Camp Simcha. There will be lots of people waiting to welcome him at the end of the tunnel who will all be happy because being sad doesn't happen there. Ian will meet past campers and counselors from camp and one of them will have the microphone to introduce Ian, once that happens he will be a counselor not a camper anymore. Ian will meet Tzvi's Grandma Zina and tell her that Tzvi said many different things (some of which he shared last night but I will not post here). Ian began to smile as Tzvi was telling him all about Heaven and what he believes will happen there. Tzvi asked Ian if he would be waiting at the tunnel for Tzvi when he was ready to go to Heaven...Ian loved this. After about 20 minutes of discussing Heaven with Ian, Tzvi and Yitzi....Ian was no longer sad, at least for the moment. We know he will bring this up again from time to time as his journey continues and he progresses towards Heaven.

As for Becca, as she always does she called me when she was home from school yesterday. I asked her how her day was and she said, "ugh". Why just "ugh", I asked. She proceeded to tell me that her mind was just not there, while she was there, her mind was not...oh boy do I understand that. "Where was your mind?" I asked. She said a little bit here and a little bit there and on life...well when Becca says on life it is always about what is going on at home and all she has to endure due to the hand we have been dealt. She has seen things a 12 year old should not have to see, she has dealt with things a 12 year old should not have to deal with...and I know that much more is to come. I knew she could hear some of the conversations with Ian, so I went to check on her. She told me that people don't get what she is going through...I told her that is correct they don't. She said some people don't believe that she is a twin and when she shows them a photo, they just look at him like he is a normal boy and it is not big deal. I tried to explain to her that they can't understand but it does not matter what other believe or think. She asked what was wrong with Ian...I told her that he was talking about being afraid of Heaven. That is when she broke down. Becca said that she does not want to come home to an empty house (right now she comes home to Ian and a nurse everyday). I told her I could not promise that, (initially, I know when the times comes, Brian and I will do what we can to ensure that does not happen). All I could do was hold her while she cried on my shoulder knowing that one day she will lose her twin brother...I felt helpless. I told her that over the years we have all been grieving and this was just one more step for her. Becca told me she felt G-d was preparing her a little bit more because she felt that it was going to be soon...my heart dropped. I asked her soon meant to her and she said sometime this school year....ugh....what if my daughter is right.... we talked about how we will work on getting used to a new normal after Ian passes away...at first one we may not like but one we would eventually get used to. She cried on my shoulder a little bit more and then told me to go check on Ian.

As quick as these conversations, start in our home, they are over. Not forgotten, but we move on....this morning Ian was good. Becca had a rough time getting off to school...so we let her go in late and with a little bit of extra time she felt like she could handle the day. 

Please remember to treasure, dream and live. As another friend who is going through a major life crisis has been saying... Please, as always, hug your loved ones tight and kiss them often. 

Thursday, October 22, 2015

Happy 12 1/2 Birthday

Today Becca and Ian turn 12 1/2 years old. When you live with a life threatening disease and you don't know what tomorrow will bring...you celebrate it all....even the 1/2 birthdays. Mommy and Daddy love you both to the moon and back. We can't wait to see what is in store for you both.





Monday, October 19, 2015

Pain Crisis Update

Ian seems to be doing better with his pain. We have increased a few of his medicines, oxycodone and gabapentin, rumor has it from his hospice nurse,we have one more increase of the gabapentin this week. Along with ice packs, massages and a fan blowing directly on his feet we have been managing. We have even had some days where he has not said "my feet are on fire" until late into the day and have been able to manage without giving him his PRN oxycodone. All a good thing.

This weekend, was his cousin Devin's Bar Mitzvah, and Ian went and enjoyed him self. He was out and about from 9:30 Saturday morning until close to 4:00 in the afternoon. He was tuckered out by the time we got home but no pain was to be hand.



Thursday, October 8, 2015

PAIN - MY FEET ARE ON FIRE

Pain comes in all shapes and sizes, all ways and places. This week pain seems to be our biggest challenge. There have been many days where getting ahead of the pain is all we are trying to do.  All our tricks, (ice packs, capsasin cream, fan, feet being uncovered) don't seem to be working. There are many things about managing Ian's care which are difficult and emotional for us...for me one of the hardest is seeing him in so much pain that he is screaming and yelling "my feet are on fire". Today, when asked to rate his pain on a scale of 1 to 10 with 1 being the best and 10 being the worst, he was at a 10...this has not happened before. We have been working closely with his hospice team and all of his pain medicines have been increased over the last few days. We are hoping that the increases will help Ian's pain come down from a 10 and for us to be able to manage it. 

Make some memories this weekend, I know we will. Treasure, dream, live. 

Tuesday, October 6, 2015

More From The Grief Club

Over the last few weeks I have been doing more reading on grief...the reading helps me to realize more and more that I have been grieving for quite a while and it comes and goes for me. The Grief Club: The Secret to Getting Through All Kinds of Change by Melody Beattie has helped me to realize that grief comes in all shapes and sizes. Here are some quotes from the book which I have found interesting. I hope you do as well...

If there's no purpose to it, loss feels impossible to endure. But if we see some meaning, bring the struggle on.

...understand that sometimes life twists, and it doesn't matter what you do.  Things don't work out the way you want, and you can't do much about it. The only way out is through. 
...every stinking dirty little thing that happens to us happens for a reason. I take each day as it comes. Each experience has something to teach us. It's our job to figure out what that lesson is.

Destiny is sneaky. It creeps up on us when we're not looking. Sometimes were staring at our problems so hard we forget they're part of our destiny too. We might forget our dreams, but our dreams don't forget us. Dreams are life's way of showing us what our destiny is. 

Meaning is important. Certain things such as religious objects or holidays have universal meaning. En masse, we agree that something means a particular thing. But the meaning we attach to life events is personal. It doesn't matter if something means anything to anyone else. What matters is what an event or experience means to us. We can go through horrendous struggles if there's meaning to what we endure. 

We each have a magic wand that can change us and impact the world. It's called our power. People say we own our power, but power isn't something we own.  It's something we step into, grow into, breathe into.  Power is a force in the universe we align with. We don't pick it up like a club.  We can write and rewrite stories that create self-esteem and the knowledge that we are loved. Even in worse-case scenarios where we weren't loved or we lost our self-esteem, we can write a new story or another ending. 

Many grieving people go through a cycle when they have nothing--no energy, attention, or love--to give anyone in their lives. That doesn't mean they don't love those people. It means they're depleted. There's nothing left to give. Intellectually, they know they should do different and better. But they're only human, and their humanity shows. Sometimes we need to accept and forgive others and ourselves because our best wasn't very good. Sometimes we go crazy--insane--with grief. If we wait for life to entice us into living, coax us into believing I it again, we may wait a long time. Making a commitment to life starts the ball rolling. We'll still have more grief to go through, more emotions to feel. But when we commit to life, we stop the downward spiral. Pieces start falling into place. 

Until next time...remember to treasure, dream and live.

Friday, October 2, 2015

Wheelchair Clinic and Follow-up on Shoulder

This morning started off early at Mount Washington Pediatric Hospital at the Wheelchair Clinic. We got to see a few faces we haven't seen in a long time, Ms. Sharon, Ms. Kathy, Ms. Trish and Mr. Craig. Over the years, we have worked with all of them for many different reasons. Today it was looking at modifications on Ian's wheelchair.  He sits ok in his current chair but since his surgery modifications definitely need to be made. We are hoping for a new set of wheels, back piece, and headrest. The biggests obstacle will be insurance, here is to hoping that they give authorization quickly and with out questions.

This afternoon, we went to see orthopedic for his shoulder. X-rays were taken ... It is showing signs of healing. He can stay in the sling for comfort and we don't have to go back. 

Woo hoo, two good appointments. Now it's time to stay in and out of the wet.

Happy weekend.


Wednesday, September 30, 2015

Microcephaly Awareness Day...I Love Someone with Microcephaly

Today is Microcephaly Awareness Day....one of the characteristics of PCH is microcephaly. 




According to The Foundation for Children with Microcephaly....
Microcephaly means small (micro) head (cephaly). It is a neurological disorder where the head circumference is less than it should normally be in an infant or a child. The condition can be present at birth or develop within the first few years of life. Most parents do not know why their child has microcephaly and may never know the cause - even with advanced genetic testing. The most difficult thing we have found is each and every case of microcephaly is different. Some children have mild to moderate delays, while others have severe delays. Most of the time there is no way to know how your child diagnosed with microcephaly will develop.  In some cases delays are apparent right away, and in others delays won't show up until after a year old. So the only thing that we as, parents, can do is just try to help our child progress, enjoy every moment with your child and take life day by day - trying not to worry about all of unanswered questions (which is must easier said than done).


Tuesday, September 22, 2015

As Fragile As China


On Sunday when the van broke down, we were fortunate to have my cousin, Michelle, at the same event we were at so she came to pick us up. While transferring Ian from the van to lay on Becca and I in the back seat of her car, Ian's arm got postioned behind his head. He immediately started complaining about his shoulder. We calmed him down and didn't really think much of it. Sunday night he complained a little bit of pain but nothing his pain medicine didn't take care of. Monday was a good day and no complaining of any shoulder pain. He slept well on Monday night.  Tuesday was a different story, Ian did a lot of complaining of shoulder pain. After many doses of pain medicine, which did not seem to touch the pain and a conversation with his hospice nurse, we decided to take Ian to Hopkins ER for X-rays. I guess I'm glad we did. Ian has a fractured humerus, upper arm. So we are in a sling and keeping it immobilized. Hoping for an easy few weeks while he heals. 

My Helpers


Because of the van breaking down, on Sunday, Tuesday I was fortunate to work from home. Ian was my helper while I was working....he help the envelopes while I did some labeling. His smile was priceless.

Also on Tuesday, I began prep for break fast for Yom Kippur, my helper Becca. After I peeled all the eggs for the eggs salad she chopped them.
Feeling grateful to have some quality, priceless time with both kids.

Sunday, September 20, 2015

Things Happen in 3's

Over the past 3 weeks...I would like to say things happen in 3's and then you are done.

3 weeks ago our stove went up...ok, easy not so inexpensive fix,  a new stove.

Last week, our microwave went up. Ok so another easy fix...a new microwave.

Well today, we headed down to the Pasadena area for a Chai Lifeline end of the summer family BBQ. We had a great time, Becca went on a jet ski, swimming, both kids went fishing. It was beautiful weather. Time to come home, we are 5-10 minutes into the ride and Brian said the temperature light comes on and then we start to see smoke from under the hood...the 3rd thing...our van breaking down. Thanks to my wonderful cousin, who also happened to be at the BBQ, the kids and I got home safely whole Brian waited with the van for the tow truck. Tomorrow we find out how easy and I'm sure not so inexpensive this fix is.

I know this is all just stuff, just frustrating and interferes with life.

I believe things happen on 3's. ..ok I'm done.

Friday, September 18, 2015

Bugs Stay Away

Well it is that time of year again when we need to keep the bugs away...bugs  I say....the sickness bugs that is. Please respect our wishes and if you don't have the flu shot please reschedule your visit until after you have gotten it or flu season is over. If you are coming down with a cold or another illness or have a cold or illness, please reschedule. To a person with respiratory issues like Ian a common cold can equal death. ...sorry to be so harsh but that is our reality. 

Happy Flu Season to all.

Wednesday, September 16, 2015

Heart Hurts

Sitting at my desk today my heart hurt...the past four days I have been home with the kids because of the weekend and Rosh Hashana (the Jewish New Year). I may not have been the one to care for him but that did not matter, what mattered was that I was home in case anything happened...I was there to help through his pain. Knowing that I am in the same house makes things easier...knowing that if he is having pain and having a rough day I am right there....today I had a hard time. Today my heart hurts.

Monday, September 7, 2015

MVP Ian Scher

What boy doesn't like to play football with his friends. Getting into a huddle to figure out plays, running and screaming when his team gets a touchdown. Let's get tough and tackle each other. Okay, well maybe it wasn't tackle football ... More like modified flag football. To the games MVP, Ian Scher...all that mattered was he was playing football with his friends. The plain white shirts were designed into team shirts...for the Ravens and the Turkeys. The backyard turned into a small football field. Hats and flag football belts were put on.  Out to the field they went, music blaring. Divided into teams. It started off as Ian,Tzvi and Andrew against Josh and Jared. During the game it somehow became Ian, Tzvi and Josh against Andrew and Jared...does it really matter who was on whose team....not to us. The football was signed by all in attendance and handed off to the MVP...IAN SCHER. Once against thanks to Chai Lifeline the smiles were priceless.


Thursday, August 27, 2015

Just Another Day

As I sit on my bed, the tears come easily. Thinking of other parents daily/nightly routines. Thinking of all the other boys in middle school, bonding with each other. Doing homework, running around outside.

It comes and goes. The grief. The anger. The hurt. The laughter. The joys. The smiles.

Many thoughts go through my mind when others share what theirs are doing, part of me wants to know, the other part of me does not. Please share regardless...I will mourn silently. 

The world goes on while I grieve for a child I haven't lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost. But very few know the pain of grieving a child you have not lost but know you will. 

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to hear the sweet whisper of his voice. I get to have wonderful conversations with him. Yet, I still mourn the little boy who used to scream at his father, sister and myself; or sing with us. I grieve for the little boy who played in the sprinkler, who swam in the bathtub during his "playtime". I grieve for his gross and fine motor skills he has lost...no more walking or sitting and sliding around the house; no more cutting paper up into tiny pieces - what I would give to have to clean up many tiny pieces of paper from the floor. Now I can only dream about what his voice would sound like as he ages, what games he would enjoy playing, would he be a good athlete; the part of him that will never be. And I feel the loss and pain of that.

I grieve for all the milestones I have missed and will never have with him. I think about how much others might take for granted. Their children going off to school every morning, coming home to tell mom or dad about their day. We haven't experienced things others take for granted and that I believe should be part of childhood. There is a loss and a sadness for times that might been but will never be.

There is sadness that he cannot do things with his twin sister. Pain relying on others to tell me about his day/night when I should hear it from him. There is a lump in my throat when people ask what he wants for his birthday or Hanukkah -- there are not many things he likes to do anymore. There is pain seeing the frustration in his eyes when others must play for him - it's just not the same as playing yourself. 

He is here, but in many ways he isn't.

I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about. 

As I sat on my bed, the tears came easily -- tears of heartache and anger, tears of frustration and pain.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

But sometimes those tears are needed. Bear with me as I grieve for a child I haven't lost, but know one day I will.


Wednesday, August 26, 2015

UPDATE - Rock ‘N’ Roll - Something a Little Crazy for Me

Woo hoo....there are just no words. Thank you does not seem enough. People from all over have come out to support me in my journey with the Rock 'N' Roll.
Thank you to you, I have surpassed my goal...that does not mean you can't donate. As part of TEAM IAN, I will be doing the walk with my friend, Heather Lev.  Your donation will go to TEAM IAN and Chai Lifeline if you donate to Heather. Let's help her reach her goal of $3,600 so I don't have to go walk on my own...support Heather and you are supporting me.

http://www.teamlifeline.org/my/61339

Heather and I have begun our training....walking, walking and more walking, by supporting all the kids and families that Chai Lifeline benefits. We have benefited first hand, helping Becca and Ian, along with Brian and I to thrive along our journey. We want to continue to help other thrive along their journeys. 


Thursday, August 20, 2015

How to Survive Being Friends With a Special Needs Parent

This was posted on a friends facebook page, originally from www.fireflyfriends.com.

It can be hard to be a friend to a special needs parent sometimes.

We can be highly sensitive, emotional people.

We're tried (all the time), we're busy (all the time), we're worried (all the time).

We want to be good friends to you too, and we're very aware that the friendship dynamic has changed as much from our end as from yours.

We forget birthdays, we turn down invitations and we hardly ever call you back when we say we will.

On behalf of special needs parents everywhere, I feel I can say that we still love you and want you in our lives.

To that end, I've put together a few tips from my own experience that might help us to maintain these very important relationships as we all negotiate this new landscape.

ASK SPECIFIC QUESTIONS

  • We understand that you don't always know what to say -- and neither do we.
  • Sometimes, we desperately want to talk about our children.
  • We'll give you details you never asked for, and find it hard to shut up.
  • We know this can be annoying, but sometimes it's about overcompensating for the fact that we might not have any 'big' news to share (no first steps or first words etc).
  • At other times, and for the same reasons, the general "How's Charlie?" question garners nothing but a one-syllable reply: "Good".
  • It's easier for both of us if you ask something a bit more specific: "How did Charlie like the zoo?" or "Is Charlie enjoying her new school?"
  • Don't be afraid to ask the kinds of questions that you would ask about any 'normal' child, eg. "How does Charlie like having Mommy all to himself now that Stella has started prep?", or "What would Ian like for his birthday?"
  • You may think these are hard ones because you and I both know that he lacks communication skills, but you can bet that I'll have an answer for you anyway.
DON'T FEEL GUILTY ABOUT SHARING YOUR CHILD'S MILESTONES WITH US
  • This is a tricky one.
  • It's one of those times it's almost unavoidable that we will feel a pang of pain and you know it.
  • We know that you know it.
  • Please understand that we can't help it -- and that we still want to hear your happy news.
  • This is especially true when we know your children well.
  • We want to celebrate with you!
  • There are a couple of things you can do to make this smoother, though.
  • Try not to offer your news apologetically.
  • We can feel that, and it feels patronizing and horrible.
  • Also, don't feel obliged to ask about our children in the same breath.
  • "Little Johnny took his first steps today, and he's only ten months old! (insert sympathetic look here) How's Charlie doing? Any changes?
  • This is awful, and puts us on the back foot straight away. You wouldn't do it if my child was a 'normal' non-walking ten-month-old, so don't do it just because my child is four and should be walking. 
  • This seems like a no-brainer, but it happens a lot.
  • Well-meaning friends and relatives make plans to do something that might seem difficult for Charlie, so we don't get invited -- or worse, we get the call that says "We didn't invite you because..."
  • The truth is, there are many things that are tough for us and for Charlie.
  • You'd be surprised to leave what we can do and do work around.
  • There will certainly be things we'd rather not attempt, but please let us make that decision, especially if it's a family-type outing that we would otherwise have.
TALK TO OUR CHILDREN
  • I can just about remember a time -- pre-children -- when I had not the faintest idea how to talk to a child.
  • I was never sure at what level you should speak to them -- was asking a three - year-old about school too hard? Too easy?
  • Would it be uncool to ruffle a ten-year-old boy's hair?
  • What's taboo with teenagers?
  • I can remember feeling awkward and strange when I saw friends with children.
  • I didn't want to ignore them, but what if I said something wildly inappropriate?
  • I'm guessing that's how a lot of people feel about talking to Charlie.
  • There's the added possibility of looking a bit silly because she won't answer you -- and perhaps won't even look you in the eye.
  • It really means something to us as parents, though, to see you make the effort.
  • A simple "Hello Charlie, you look cute in your pink hat" or "Lucky you Charlie, - I love chocolate too" is enough.
TALK ABOUT OTHER THINGS TOO
  • Charlie is but one aspect of our very full lives.
  • Don't feel like you can't talk to us about other things going on in both our lives -- sometimes we may even appear excited to talk to you about your tax return! (Well, appear...)
  • Seriously though, we do watch movies, and we do have jobs and we do have other children, and we still enjoy talking about all of them -- yours and ours.
  • We can even have whole conversations sometimes that don't have Charlie in them!




Wednesday, August 12, 2015

Rock ‘N’ Roll - Something a Little Crazy for Me

So I decided to do something a little crazy for me...walk in a marathon...well the 10K part of it...I want to give back and need your help in order to do so...

Chai Lifeline is a wonderful organization which has provided our family with more opportunities then I can even begin to share...but let me try to give you a glimmer of what they have done for us.
  • Becca has a big sister, Rachel, who spends time with her every other week doing things we don't have the time to do with her...little things such as going to the movies, paint your own pottery...we are grateful for Rachel being able to do these with Becca.
  • Ian has a big brother, Netanel, who comes over every week and spends time with him...playing on the WII or just watching TV.
  • Volunteers, Tzvi, Adena, Adina, Ouriel and Ella 
  • Dinner is provided for us once a week
  • CAMP SIMCHA SPECIAL...where to even begin with this. For the past 3 years, Ian has gone to this wonderful camp...along with his wonderful counselor, Danny. Danny and the rest of the camp staff have provided Ian with an opportunity he would never have...going to sleep away camp. Swimming, boat rides, helicopter rides, arts and crafts, concerts...an amazing experience for him.
  • CAMP SIMCHA SPECIAL....gives Becca sometime without Ian to be a kid. 
  • CAMP SIMCHA SPECIAL...gives Brian and I a break, peace of mind knowing he is being well taken care of by Danny and all the staff...the medical staff has gotten to know him over the past 3 years, knowings his little ins and outs. 
This is just some of what Chai Lifeline has done for us...here is more of what it does...round emotional, social, and financial support to more than 4,300 children and their families every year. Chai Lifeline's programs and activities changes families lives forever, returning joy and hope and enabling us to live full and happy lives despite the presence of illness. Its most famous program is Camp Simcha (and its sister camp, Camp Simcha Special); every year these two camps offer 450 kids a chance to forget about illness and just be kids again.


I am walking the Rock ‘N’ Roll Las Vegas Marathon, Half Marathon and 10K on their behalf. The training isn't easy, and the race itself will be quite a challenge too, but I am truly inspired by these children and their daily battle with life threatening or chronic illnesses. I plan to raise over $3600 by race day, and I hope you will help me reach this goal by making a generous tax-deductible donation.

Your support is a critical part of this effort and I know that together we can make a difference to Ian and his friends. All donations are 100% tax-deductible, and the Team Lifeline website (www.teamlifeline.org) makes donations quick, easy, and secure. Making a donation will only take a minute, so please donate today by visiting - www.teamlifeline.org/my/61338

Thank you for supporting me, and in doing so, helping children and their families cope with the diagnosis, treatment, and aftermath of serious pediatric illness.

I look forward to keeping you informed of my progress as a walker.

I hope you will also forward this to anyone you feel might be interested in supporting Chai Lifeline. Together we will make a difference!

Sunday, August 9, 2015

All Together Again

It is hard to believe that it has been 3 weeks since we dropped Becca off at Camp Louise and 10 days since we dropped Ian off at Camp Simcha Special. As of this morning, we are all together again.

Thank you Camp Louise for a wonderful summer for Becca. She was all smiles when we picked her up and did not want to leave. She shared stores about AiryLou nights, trip to New York, the chocolate lady, workshops and so much more.

Thank you Camp Simcha Special and Danny for a wonderful summer for Ian. We know he was all smiles with his Ferrari ride, chopper ride (playing eye spy for something green), bubble party, and all the nightly entertainment.

As for Brian and I, we did a little bit of playing...went to Hershey park and Annapolis. Went out with friends and did the responsible thing...worked. We tried to relax...Brian did it better then I did. The house was quiet, too quiet...
I have realized relaxing and quiet are not things I am good at anymore.

I guess it's good we are all together again and the relaxing and quiet are over. ..back to the hustle of our normal.

Thursday, July 30, 2015

Signed, Sealed and Delivered

Yesterday went well.. Ian has been delivered to Camp Simcha Special, along with his counselor Danny. They are ready for 10 days of unbelievable fun. 

Ian's arrival, yes he is in the middle of all the boys.
Ian's cabin...Fort Simcha, also known as B1.

Just one view of the van as we were leaving. We even had some of Ian's medical supplies go up to camp in Wednesday with Gila, one of the camp nurses. Thanks Gila..we couldn't have done it without you. 

More of Ian's arrival.
Danny and Ian when we first got to camp and out of the van after our 5 hour drive. 
One more from Ian's arrival... Now how happy does he look. Have a great 10 days little man you deserve it. Mommy, daddy and Becca love you.