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Saturday, July 15, 2017

Fearful thing...

I was at a funeral yesterday and the rabbi read this poem, it really seemed to resonate with me.

It is a fearful thing
to love
what death can touch.

A fearful thing 
to love,
hop, dream; to be--

to be, 
and oh! to lose.

A thing for fools, this,
and
a holy thing,
a holy thing 
to love.

For 
your life has lived in me,
your laugh once lifted me, 
your word was gift to me.

To remember this
brings a painful joy.

'Tis a human thing, love,
a holy thing, 
to love
what death has touched.

(Chaim Stern)


Sunday, July 9, 2017

Butterfly Exhibit

The Brookside Gardens are beautiful. The 50 acre property features gardens with combinations of color and texture that merge together all senses. In addition, they host annual two events...the wings of fancy live butterfly & caterpillar exhibit and the garden of lights. Today we had the opportunity to met some friends there for the butterfly exhibit. We have heard many wonderful things about it but seeing it with your own eyes is amazing. Our friend, Kathy, has worked at the gardens for years, so having her and her husband, Sam, there with us to explain everything made the day more special. Becca loved every second and was in her element being able to talk to Kathy all science like. An extra special moment was when one of the butterflies landed on Becca (photo below where the butterfly is closed, it should be noted that when this butterfly opened the wings were blue).

We can't wait to go back for the garden of lights with Kathy and Sam.


Monday, July 3, 2017

Unveiling - July 2, 2017

The unveiling is the formal dedication of the headstone. It is customary for the unveiling to take place 12 months after the funeral as a way to mark the end of the formal mourning period. However, the unveiling may take place any time after Sheloshim (30 days).

Jewish law requires that a grave be marked, but the type of marking and the headstone are not specified. 

When we first started talking about Ian's unveiling we realized a year was right at the beginning of the school year, not the best time for Becca. We then asked Becca if she would like it before camp or after camp, she said before camp so she could enjoy the rest of the summer and have fun at camp without the unveiling hanging over her head. Looking at the calendar July 2, 2017 was the best date. A few days ago I was at grief therapy and realized July 4th weekend held many different meaning for Ian. July 4th weekend 2009, everything started to go down hill, July 4th weekend 2012, we got a name VRK1, July 2, 2017 we had Ian's unveiling, 9 1/2 months after he left us. It was immediate family, helping us to get through the day, saying prayers and honoring Ian with his forever stone.


UNVEILING PRAYER
A thousand years, in the sight of our eternal and merciful Father, are but a day; the years of our life but a passing hour. He grants us life and life He has taken away; praised be His name.

Ian Alexander Scher has been taken from our midst. We are pained by the gap in our lives. Yet love is strong as death; the bonds love creates are eternal. And ours is the blessing of memory, through which the lives of our departed continue to be with us.

Almighty G-d, Master of mercy, whose compassion endures, let neither death nor sorrow have dominion over us. Grant us comfort, strength and consolation, as it is written: "The Lord shall be your enduring light, and the days of your mourning shall come to an end."

Bless us with love and peace, that we may serve You with a perfect heart. Accept our act of devotion, O Lord, as we consecrate this monument to the memory of Ian Alexander Scher with love and respect.

May his soul be bound up in the bond of life. Amen.  


PRAYER ON VISITING GRAVES
At the rising of the sun and at its going down
We remember them.
At the blowing of the wind and the chill of winter
We remember them.
At the opening of the buds and in the rebirth of spring
We remember them.
At the blueness of he skies and in the warmth of summer
We remember them.
At the rustling of the leaves and in the beauty of autumn
We remember them.
At the beginning of the year and when it ends
We remember them.
As long as we live, they too will live; for they are now a part of us, as we remember them.
When we are weary and in need of strength
We remember them.
When we are lost and sick at heart
We remember them.
When we have joy we crave to share
We remember them.
When we have achievements that are based on theirs
We remember them.
As long as we live, they too will live; for they are now a part of us, as we remember them.


AT THE GRAVE OF A CHILD
O Lord, as I stand at the grave of my beloved child, I tenderly recall the joys that he gave me during his lifetime. I remember how I enjoyed watching him grow and I am grateful for the time we had together. Though this time was brief, many were the blessings he brought into our home. The passage of years will never fill the void in my heart, nor can time soften the pain of bereavement. Though he is no longer in our midst, his memory shall forever be enshrined in my heart.

O merciful G-d, Giver of life, You have recalled what is Your own, and have taken him into Your loving care and keeping. Though my heart still grieves, may I, who have known the joys of parenthood, bring love and cheer into the lives of others. I pray that the soul of my dearly beloved child may be bound up in the bond of eternal life, together with the souls of all the righteous that are in Your keeping. Amen.


AT THE GRAVE OF A BROTHER OR SISTER

O merciful G-d, I fondly recollect the happy years spent with my dear brother, sharing the love and traditions of our home and family. Alas, death claimed you too soon and removed you too early from those who loved you. Though You have called him back, O G-d, I shall always hold sacred the memories of his kindness and sincerity, love an devotion. O Lord, grant that the recollection of his life provide an incentive to righteous living. I place my trust in You who are the source of all life and my strength in time of sorrow. Though a link has been severed from our family chain, help me, O G-d, to be more closely united with those dear ones who remain. May the soul of my beloved brother be bound up in the bond of eternal life together with the souls of all the righteous that are in Your keeping. Amen.




Wednesday, June 28, 2017

Project Lead the Way (PLTW) Biomedical Science and Questions

Sometime last school year Becca applied to the biomedical program at Franklin High School and got accepted. She was super excited. 

This program allows students to explore the concepts of human medicine through an introduction of topics such as physiology, genetics, microbiology and public health. Students acquire strong teamwork and communication practices, and develop organizational, critical-thinking, and problem-solving skills as they investigate various health conditions and infectious diseases, examine the interactions of human body systems, and explore how to prevent and fight infection. In Grade 12, students have the opportunity to work on an independent project with a mentor. Successful completion of the program allows students to pursue post-secondary education and careers in the biomedical sciences.

Program of Study
Grade 9 - Principles of the Biomedical Sciences
Grade 10 - Human Body Systems
Grade 11 - Medical Interventions
Grade 12 - Biomedical Innovation PLTWW Biomed CWE

A few weeks ago, she spent 3 1/2 days at the high school for a biomedical camp. The point of the camp was for the kids to meet others in the program, get a feel for the school as well as a feel for the program. Each day was a different topic. Becca loved each day and came home excited about each topic. One of the days was genetics, this led to some questions on her part, I did the best i could to answer them as well as let her read the report from Ian's initial diagnosis in 2012. This answered some of her questions but also led to more questions. With those I reached out to the genetic counselor we used in 2012 with her questions. Here is the wonderful letter she wrote back to Becca. 

Dear Becca,

I hope you are doing okay given all you have been through with losing Ian.  He was a special boy and is remembered by so many people, as I am sure you know.  I don’t know if you remember me, but I worked with Dr. Raymond at Kennedy Krieger and was one of the people who helped to figure out what was causing Ian’s problems.  

Your mom tells me that you’re studying genetics in school now and that you have some questions about the genetic cause of Ian’s condition.  Genetics is a huge topic and there is lots to learn, but I have tried to cover some basics in this message as a starting point.

By now you have probably learned about chromosomes, genes, and DNA.  DNA is a chemical substance contained in each of our cells and it is made up of four chemical units that we call “nucleotides”.  They each have specific names.  We abbreviate the names using the letters A, G, T, and C.  We have more than 3 billion of these DNA letters in our genome, but they are soo microscopically tiny that we cannot see them with the naked eye.  We have two copies of all of our genetic information.  One set comes from our mother (the egg) and one set comes from our father (the sperm).   So we have double of everything, which is designed to give us a backup system in case a gene is broken or not working. 

Clusters of DNA letters form genes, and we give these genes names depending on what they do.  Most genes contain instructions that tell our bodies to make important proteins or other molecules that our bodies need in order to function.  Some genes are responsible for making enzymes that digest the food in our stomachs.  Other genes are responsible for protecting us from damaging UV rays that can cause cancer.  Some genes make up the cells that allow our brains to retrieve memories.  There are probably about 25,000 genes in total and some of them are responsible for doing more than one thing.   Some genetic conditions are caused by mistakes, or disruptions, in genes that play very important roles in our bodies.  This is the type of genetic problem Ian had (more about this below).   Sometimes people call these mistakes “mutations” - that is not a word that I love, but you will hear people use it.

The genes are strung together a bit like necklaces and they are wrapped around structures in our cells called chromosomes.  The chromosomes are the little worm-like things you see inside cells and we have 46 in total (23 from mom, 23 from dad).  Again, double of everything.  The final pair of chromosomes are called “sex” chromosomes.  Men have one X chromosome and one Y chromosome (the Y chromosome is tiny!) and women have two X chromosomes.  Genes on the Y chromosome are what cause men to develop some different features than women.   Some genetic conditions are caused by deletions, breakages, or duplications of chromosome material, in which whole clusters of genes are either missing or duplicated or disrupted.  You might learn about a condition called Down syndrome.  People with Down syndrome have a whole extra copy of chromosome 21, which is a LOT of extra genetic material, so they can have a lot of health issues.   Sometimes if babies have deleted or duplicated chromosomes they are too sick to ever make it out of the womb, and this is how a lot of pregnancy miscarriages are caused.  Ian did not have a chromosome disorder.

The gene that was affected in Ian’s case is called VRK1 and it is located on chromosome 14.  When Ian was diagnosed, we did not know very much about what this gene does, and today we still don’t have a lot of information about it.   Recent research shows that VRK1 is an important gene for the development and regulation of the central nervous system (the spinal cord and the brain) and that brain and nervous system structures cannot develop or sustain themselves without it.   Your mom and dad each carry one broken copy of this gene and one working copy of this gene (not their fault!  These things happen randomly).  You also carry one broken copy and one working copy.  The good news for the three of you is that one working copy is enough to keep you healthy and functioning normally.   However, unfortunately, Ian inherited the broken copy from both your mom and your dad, so he had two broken copies and this is why he was sick.   

Conditions that require two broken copies in order to happen are called autosomal recessive conditions.   You will also learn about dominant conditions which only require one broken copy of a gene, and you will learn about X-linked conditions caused by genes on the X chromosome.   These are each inherited in families in different ways.   Autosomal recessive conditions are usually very rare, but sometimes they run more commonly in populations that have a lot of shared ancestry, like Ashkenazi Jewish people.  We think that the mutation in your family may be more common in families of Ashkenazi Jewish descent.

The specific VRK1 mutation in your family is called c.C1072T; p.R358X.  What this means is that a “C” in position 1072 in the VRK1 gene was changed to a “T”.  This change in the code meant that instead of making a full VRK1 protein, Ian’s body stopped making the protein altogether.  We call this a “nonsense” mutation because the DNA code stops making sense and thus the body stops making the protein it’s supposed to be making.  Since both copies of the VRK1 gene were affected in Ian, his body did not have this protein at all and that is why we think he developed differently.

It is important to remember that we are more than just our genes.  Two children with Down syndrome, or two children with VRK1 mutations, will still be very different from one another and there are many other things that affect our health and how we grow and develop, such as our environment and our different combinations of other genes.  But some genes have very important functions and when we see mistakes in these genes they can have serious consequences for health.

We do not expect you to ever have any problems like Ian, because your fully working VRK1 gene is doing the job you need it to do.  However, when you decide to have children of your own, it will be important for your partner to have testing to see if he carries any mutation in the VRK1 gene, especially if he is also Jewish.   There are other genetic diseases that run more commonly in Jewish families, such as Tay-Sachs disease, so it will be important for you and him to have carrier testing for these conditions as well.

Here are some links with visuals corresponding to the concepts discussed above.  I hope this answers some of your questions and isn’t too basic or too complicated.  Please feel free to get in touch if anything is unclear.


All the best,
Leila



I'm sure over time more questions will come up and we will do our best to answer them as well as help her to continue to deal with her grief. She is doing ok after this weekend but the unveiling brought emotions to the for front for all of us. We continue our grief therapy as well as private therapy to deal with the loss of Ian and the impact it has had on our lives individually as well as a family. As always, thank you to all who have been there for us over the years, especially this pass one as we have our year of firsts. 

Thursday, June 22, 2017

Amazing Middle School Career

We are so proud of Becca. Her report card showed up today, all A's and B's. Going back and looking at her middle school career, she made honor roll ever quarter...way to go. Keeping her grades up over the years while continuing to deal with our journey is amazing. We love you with all our hearts and can't wait to see what your future holds.

On the last day of school, I sent an email to all of Becca's teachers from middle school:

We wanted to say a special thank you to all of Becca's teachers from Franklin Middle School. As you know she didn't have the "normal" family and middle school years, however each and everyone of you played an important role on helping her to overcome all she had too. We all worked together to make sure she developed the skills along with the resilience she would need to get to where she is today. Each year was difficult in its own right due to Ian's ups and downs and never knowing when he would pass. With that happening so early in her 8th grade year, you all took her under your wings to make sure she would have a safe place to be dealing with her grief, thank you for that. Please know Franklin Middle will hold a special place in our hearts for all you have done for our family over the last 3 years.

Have a wonderful summer and continue to do what you all do so wonderfully, teach and care for the kids.


I heard back from a few of her teachers and I wanted to share the wonderful things they had to say:

Thank you for your kind works. It was my pleasure to support her during her experiences at FMS. Becca is a wonderful, young woman who will continue to persevere. I look forward to hearing about all her accomplishments as she progresses through high school.

I am very touched by your email.

Thank you for your kind message, and it was great having the opportunity to work with Becca in 7th grade. I know that she will do great things in high school and in the future to come!

Thank you for the pleasure of teaching her!

Thank you for your kind message. Please know that you and your family will also be in my heart.

Thank you very much for your email. Your family has been in my thoughts, especially this year. Becca is such a wonderful student and person! Her strength and personality I am sure will lead to a bright future! I wish her the best of luck as she continues into high school.

It was a pleasure to teach Becca. I wish her the very best in the future.




Friday, June 16, 2017

How to Love Someone Who is Grieving Their Child

Found on WWW.emilyrlong.com

When someone you love has experienced the loss of a child, it's hard on everyone. They are engulfed in a sea of unbearable pain and grief and sorrow while you may be struggling to stand beside them, wondering what to say, what to do, and what they need. You love them dearly, but you don't really know what they are going through and you don't know what to do.

Maybe you're grieving too.
Maybe you're suffering as you witness their suffering.
Maybe you feel helpless.
Maybe you find yourself saying all the wrong things because you don't know what else to say.

Maybe you want to love them through this, but no one taught you how to do that.

It's ok.

Most of us don't really know how to navigate this thing called grief. They don't teach Grief 101 in high school (although, perhaps they should!).

In an ideal world, your heartbroken loved one would be able to say, "Here, this is what I need. This is how you can help me." Unfortunately, that's generally not how it works. They have been crushed by a devastating loss and, chances are, they're giving everything they have to simply get out of bed in the morning. Trying to articulate what they need and what kind of support they want probably feels next to impossible.

Fortunately, loving a grieving friend or family member isn't as complicated as it can seem. Generally, it's simply about being a compassionate and kind human.

SHOW UP
First and foremost, show up. Be here.

Show up at their door. Run errands for them. Do their laundry. Make them meals and sit with them to ensure they eat (many times in early grief people lose their appetite and don't eat regularly). Lay on the bed and hold them while they cry.


Continue to show up for months or years - this is a lifetime loss and they will need you for a lifetime. Text them. Call them. Send cards. Remember birthdays and anniversaries of their child's life. Help them plan birthday parties and holiday remembrances and show up for death anniversaries. Mark them on your calendar so you don't forget - because they won't. And they won't forget those who show up for them.

You will likely say or do the wrong thing at some point. But if you are willing to keep showing up and work through the discomfort, that's what will matter. That's how you'll help.

BE PATIENT
Grief is not short lived. Nor is it linear or simple or logical.

Grieving a child takes a lifetime. We love our children for a lifetime and we will grieve them for a lifetime. Society likes to tell us that after a certain period of time, grief should be completed and we should be ready to find "closure" and "move on."

To be quite honest, if you buy into it that way of thinking, you will struggle to be able to support your loved one as long as they will need you to.

Your friend or family member will grieve far longer than you will want to hear about it or be around it. This is where they will need you to be patient and understanding.

Those who grieve their child(ren) will eventually find a way to live with that grief and that aching hole in their life, but they will never stop missing their child or longing to hold them. Birthdays and holidays and anniversary dates may be painful and challenging for the rest of their life.

When you find yourself tiring of their grief or wanting them to "get over it already," remember - they are far, far more exhausted and sick of grieving than you can even imagine. This is when they need you most to keep showing up.

LISTEN
While you might be struggling to know what to say, it's likely your loved one really wants someone who will listen.

Really, truly listen.

To their fears. To their grief. To their doubts and guilt and regrets and questioning. To the part of them that feels like they've failed their children. To their anger and their rage at the injustice of their children's lives being cut short. To the urges of grief that make them feel crazy and abnormal.

Let those you love simply talk with you and be heard without judgment or false optimism. Don't try to fix it or to help them feel something different - just listen.

Listen and when you want to object to something they are saying, or inject your own thoughts, stay silent and listen even more.

Listen and then simply tell them that you love them and you are here.

FORGIVE
Here's the honest truth: For a while, your friend or family member isn't going to be a terribly great friend or family member.

They probably won't always show up for holiday celebrations or birthdays or fun outings. They'll probably forget your birthday and anniversary and other special occasions. They may not feel up to attending baby showers and children's birthdays or being around babies and kids at all (this particular thing might last for years).

In that first year after their child died especially, they will probably forget things you told them or make plans and either forget about them or cancel at the last minute because they couldn't get out of bed that day.

When you complain about every day matters like being tired or your child acting up or the annoying co-worker you can't stand, they may not engage in the conversation the way they used to or may tell you that you're overreacting. It's not hat they don't care about your difficulties, it's simply that what they've experienced is so overwhelmingly huge everything else feels small and meaningless in comparison.

So, when they can't be the friend or family member you remember or want them to be, forgive them. They're still learning how to navigate life after the entire landscape has changed - not unlike being dropped in a foreign land with no map and no way to communicate.

GET TO KNOW THEM
However long you may have known your loved one or how well you might have known them, be prepared to get to know them all over again.

The loss of a child changes us in irrevocable ways.

Your friend or family member isn't the person they once were and they will never fully be that person again. Grief has forged them into someone new.

Don't be surprised if they don't respond to things the way they once would have or if they suddenly aren't interested in things they used to love or if the beliefs about the world they used to hold so dear are ones they cannot abide by anymore.

No, they won't be the person you remember and loved so very much. Grief will change and morph them into someone new - and even that will change and morph again over time.

But don't give up on them too quickly. They may not be the person you knew, but you might really love the person they have or are becoming.

Take time to get to know the new post-loss them.

REMEMBER
Finally, if you do nothing else, remember with them.

Help them remember their child through the years and comfort them with the knowledge that their child has not and will not be forgotten.

Share memories with them. Say their child's name. Remember their child birthday. Honor them on the holidays and for Mother's and Father's day. Donate in their child's name. Read articles like this one and discuss it with your friend or family member.

Give your loved on the gift of remembering their child. It's the greatest gift you can give.

And above all else, love them. Love them so deeply and openly and clearly they can't help but feel it radiating from you.

They need you and they need that love.

Love them fiercely.


Tuesday, June 13, 2017

Moving On Up

This week has been a lot of good stuff. Finals Monday and Tuesday.  Wednesday was the 8th grade trip for a National Harbor boat ride on the Spirit of Baltimore; lunch, dancing, and picture taking.


On Thursday was rehearsal and awards ceremony. Becca was nominated for the The Treuchet-Crumbaugh Citizenship Award which is giving to students who display an altruistic character, consistently helpful and is an "all around good student". The 8th grade teachers nominate students and then the faculty picks one boy and one girl. From the 400 8th graders, Becca was one of 37 kids nominated...Becca and her friend Jake WON the Citizenship Award. We were shocked and thrilled. Her reaction when she went to receive her award was priceless. It was an exceptional day celebrating her.



Friday was the day, Promotion Ceremony, Moving on Up to High School. Hard to believe we were going to have a freshman in high school. It would be a bittersweet day, but one of celebrating Becca. 






Wednesday, June 7, 2017

A Belated Birthday Party

It took a while to get a date down that would work for Becca and the wonderful Chai Lifeline volunteers we are close with, but finally we did, Sunday, June 4th. It was small but meaningful...4 volunteers, Becca, Brian and I went rollerskating. Well, some of us skated and the others watched. Rollerskating is hard work but lots of fun. We sang happy birthday,  had cup cakes and Becca got a few things to take to camp with her. When we were done, we went outside and did a balloon release wishing Ian a happy belated birthday. 






Sunday, June 4, 2017

A Photo and A Story

Every photo has a story behind it. Ian had many caregivers in his life, one of his first ones was Alyssa, his camp counselor from Camp Milldale. Alyssa was with Ian for 3 summers and would continue to visit and spend time with our family after she moved onto her teaching career. The other day I got an email from her with this amazing photo.  It brought back so many wonderful stories of their time together....so I asked Alyssa if she was game to share the story behind  the photo. In Alyssa's words...

One of Ian's favorite games to play when I came to babysit or visit was doctor, and of course, he was the doctor. I knew exactly where you kept the doctor's kit in the basement because I was always immediately sent downstairs to get it when I walked in the door. In the earlier years, I would lie down on the couch and Ian would use the various tools to examine me or give me shots. I underwent at least 20 "surgeries" in his capable hands...or should I say maybe not so capable because at least once or twice he forgot to sew me back up or put my brain back :-) Later on when he was not as mobile, he would still boss me around, telling me which tools to hand him and what to do with them. Then it was my own fault if my brain got left out of my head ;p When I think about Ian, this is one of my favorite memories. 

Thanks for sharing Alyssa and putting a smile on our faces with this wonderful photo and story.


Friday, June 2, 2017

Memorial Plaque

A bronze plaque listing the name of the departed and those who have established the memorial is permanently affixed to the rear wall of the Sanctuary in alphabetical sequence. The bronze plaque also insures that the name will be listed on our website under heading of Perpetual Memorials, and the name is read at services on the actual day of the yahrzeit. In addition, newly established bronze memorial plaques will be dedicated on the second day of Shavuot

Thank you to my co-workers at Chizuk Amuno for purchasing this for us.
Approximately 3 weeks ago, Brian, Becca and I came up to the Sanctuary to hang Ian's plaque as we wanted to have a private moment when this was done. We did not feel we would be able to handle the service on Shavuot, however, Nana and Pop were able to attend and said the service was wonderful as was the sermon made by Rabbi Shulman. I asked Rabbi Shulman for a copy of his sermon so I could read it...wonderful it was. The basic premise of his sermon is that for every plaque which has been dedicated on Shavuot, they are a "one of a kind, unique people whose love and pride meant everything to us. Whose memories and lives continue to bless us with meaning and goodness. Memorial plaques represent the people who matter most in our lives. They are symbols of love. Signifying our loved ones and their lives, our memories and their legacies. All of which continue to have meaning for each of us."

Friday, May 26, 2017

Looking Good

Looking good on May 26, 2016. Came up on this day on Facebook.....missing him and holding onto the invisible string every single day. Ian I hope you are running around and getting into all sorts of trouble with all of our family and friends in Heaven.

Wednesday, May 24, 2017

Needs A Haircut

This popped up on my Facebook time line today....not only does he need a haircut but of course the tongue is out....LOL....Love and missing this little man.

Monday, May 22, 2017

Spinraza - A Treatment for Spinal Muscular Atrophy

December 2016, Spinraza (Nusinersen) became the first approved drug used in treating Spinal Muscular Atrophy (SMA).  Besides keeping everyone updated regarding Ian's journey and our family, one of my goals regarding the blog has been to education. SMA is a hereditary disease that causes weakness and muscle wasting because of the loss of lower motor neurons controlling movement. There is a wide variability in age of onset, symptoms and rate of progression. Spinraza is used only for those with SMA, to be clear this would not of helped Ian, as Spinraza is designed to treat SMA caused by mutations in chromosome 5q that lead to SMN protein deficiency. Ian had an altercation of the VRK1 gene at 14q32.2, meaning he did not have SMA but SMA with PCH.  It is designed to modify SMA.  Spinraza is approved for use across the range of spinal muscular atrophy patients. According to the Spinraza information sheet, in a controlled study, individuals with infantile-onset SMA treated with Spinraza achieved a clinically meaningful improvement in motor function compared to untreated individuals. In open-label, uncontrolled studies in individuals who had or were likely to develop Type 1, 2 or 3 SMA, some individuals treated with Spinraza showed improvements, including:

  • The achievement of milestones such as the ability to sit independently, stand, or walk when they would otherwise be unable to do so.
  • Maintaining milestones at ages when they would be expected to lose them.
  • Surviving longer than expected considering the typical course of their disease (number of SMN2 copies).
This is a wonderful break through for those with SMA and the rare disease community. It gives hope.

Saturday, May 20, 2017

Throw Back

As we all know Facebook shows us memories from that day years ago, these 2 beauties popped up today. They are from their cousin Noah's birthday party. As a way for me to save memories, putting the photos on the blog is my way of doing it.  This is a way to always know where they are. Enjoy!

Thursday, May 11, 2017

A Mother's Chorus: Grieving a Child on Mother's Day

The post A Mother's Chorus: Grieving a Child on Mother's Day appeared first on What's Your Grief

Dear Friend,

I miss my child every day. The grief of mine will never leave me, and honestly, why should it? I love my child more than I ever could have imagined, and yes, I do mean present tense "love". It is excruciating knowing that my child will never return to my arms. However, a mother's love for her child doesn't require physical presence; this can be proven by the fact that most mothers love their children well before they are even born. I will love my child forever, and therefore, I will grieve my child forever. This is just how it goes. 

I know it's difficult for some people to understand my ongoing grief, I guess because they want me to "get better" or return to "normal." However, I actually am normal. I'm just different now. I believe those who say they want to support me on difficult days like Mother's Day, but part of this accepting me as a grieving mother who will always love her deceased child. Again, this is just now it goes. 

My grief is like the weather. Somedays it's calm, quiet, maybe even a little sunny. Other days it's a devastating storm that makes me feel angry, exhausted, raw, and empty. I wake up in the morning and wonder -- "Am I even alive at all? And if so, how am I supposed to make it through this day?" This is why when you ask me how I feel about Mother's Day, all i can say that it depends. Of course, I'm going to try my best to cope with the day, but while you're hoping that your Mother's Day picnic doesn't get spoiled by actual rain, I'll be praying that the grief storms stay at bay.

Like make things in a grieving mother's life, Mother's Day is bittersweet to the nth degree. On the one hand, I feel immense joy because I was blessed with my child and I feel gratitude for every moment I was given with them. On the other hand, the pain of missing my child -- the greatest happiness, my life's purpose, and my best friend -- is intense.

Bereaved mothers live with so many of these confusing contrasts. They are like undercurrents that tug at and toss about our hearts and minds. I am a mother to a child who is not alive. Perhaps a child who you've never met. You can't ask me about their school year, or how they're liking piano lessons, or whether they've chosen a major in college. In my mind, I've imagined my child doing all these things. People don't realize that I grieve each of my child's milestones, knowing they didn't get the opportunity to experience these special days.

Most people don't know how to validate my child's place in the world or my ongoing role as my child's mother. This is a difficult concept for others to grasp. Heck, sometimes even I grapple with the answers to questions like "Do you have children?" and "How many?." I know many bereaved mothers, like me, long for these questions to have straightforward answers. Sadly, mothers who have experienced the death of their only child may even wonder whether they get to call themselves a mother at all in broader society. So, in addition to the pain of grief, these mothers have to cope with a sense of being left out, forgotten, and ignored. Can you imagine how that might feel? I think it must be like being stabbed through the heart and when you turn to others for help they say "What blood?" "What knife?"

Then, for mothers who have surviving children, there is this gem of a comment -- "Don't forget, you're lucky to have other children." Please let me assure you, a mother does not forget any of her children, which is kind of the point. This mother loves each and every one of her unique and special children in unique and special ways, but one of her children has died and so her love for this child looks like a little untraditional. Mothers do not have a finite amount of love to be shifted, divided, and spread around depending on the number of children they have on this Earth. So please be careful with your comments, because this dynamic is difficult enough for grieving mothers who often feel torn between feeling joy and happiness for their living children and grief for the child who has died.

All that said, you asked me what it's like to grieve a child on Mother's Day, so here's what I have to say:

This day will forever be hard for me. I live with an emptiness that no one can fill; so I may be sad, I may be unsocialable, and I may need to take a break to myself in a quiet place. Whatever shape my grief takes on this day, please allow me to feel the way I feel and please follow my lead.

Beyond that, acknowledge me as a mother. It makes me feel forgotten and as though my child has been forgotten when people act as though my child never existed. Also, I can sense that people feel uncomfortable talking about my child and I constantly feel like the elephant in the room, but it doesn't have to be this way. Honestly, I find it really comforting when someone talks about my child. I love hearing their name spoken out loud! I love hearing stories about them. Maybe you know a story I've never heard, or maybe I've heard it a hundred times before, but it really doesn't matter to me. Your acknowledgement alone is one of the greatest Mother's Day gifts you could give me.

I guess while I'm offering my two cents, I also have something to say to bereaved mothers. No one has it all figured out, but I've learned a few lessons along the way. If you're worried about Mother's Day, you're not alone. Try not to get overwhelmed or wrapped up in anxiety. You may actually find that the anticipation of the day is worse than the day itself. You may want to plan a whole day of activities just to stay busy, or you may feel like doing nothing at all. There is no "right" way to handle Mother's Day -- but do try to plan ahead a little. You may want to reach out to others who are struggling with the day and, if you can, it always helps to face the day with people who love and support you.

Whatever you do, believe you will make it through the day. With time, the grief storms show grow smaller and less frequent and you will find a little more balance and room to breathe. Believe you will be okay and have hope that in the future you will find yourself in a place where you can grieve and celebrate on Mother's Day all at the same time.

Let's take care of each other,

M

APPROVED

Back in January I posted about Becca and her girl scouts sisters doing their Silver Project in a post Silver Award Project. Bronze, Silver, Gold, These represent the highest honors a Girl Scout can earn.In order to achieve the Silver one must be in 6th, 7th or 8th grade; be a registered Girl Scout Cadette, and have completed a Cadette Journey.  This project was a culmination of a years worth of work and over 50 hours of service work. The girls did a disability awareness day. I was not sure how Becca was going to handle the project once Ian passed away but she did an incredible job. The 6 girls decided that they were going to finish the project in memory/honor of Ian, what a wonderful way to remember him.

Cathy Thomas, the girls leader, worked hard with them to have it all come together. Last night, Cathy along with some of the other mom's, had the privilege of letting the girls know that Girl Scouts of Central Maryland APPROVED their project. 

Way to go girls....we couldn't be more proud.





Thursday, May 4, 2017

A Letter To My Daughter

To our beautiful Becca.....over the years we have told you that you will always have a brother, your future spouse will always have a brother-in-law and your future kids will always have an uncle. You will always be a TWIN. Death ends a life, but does not end a relationship. by Robert Woodruff Anderson

I just finished reading OPTION B by Sheryl Sandberg and Adam Grant, telling Sheryl's story of the sudden death of her husband. Her life with her husband was Option A and once he passed away she had no choice but to move into Option B. I know over the years, especially the months since Ian's passing you have struggled with finding your Option B, we all have. For all of us emotions have come, gone and come again; anger has come, gone and come again. as well as tears have come, gone and come again. Daddy and I don't know what it is like to lose a brother but we do know what it is like to lose Ian...to be the only other two people who know what it is like to have constant things going on in the house 24/7 and in a minute for that to be turned upside down. We knew for years this would happen, we prepared as much as possible but to truly prepare is not possible. One does not know how they are going to react when it finally happens. The pain, relief, emptiness, sadness, loneliness...it all comes up. You have put some walls up to help you get through the days, some of those days are easier than others...those days will come and go just as the walls will come and go. You have to let some walls down, cry, share emotions with us as well as with others who have experienced a loss like yours. We hope this has helped you to know and see it is okay to continue loving.

Resilience means the capacity to recover quickly from difficulties; toughness or the ability of a substance or object to spring back into shape; elasticity. Resilience in love means finding strength from within that you can share with others. Finding a way to make love last through the highs and lows. Finding your own way to love when life does not work out as planned. Finding the hope to love and laugh again when love is cruelly taken from you. And finding a way to hang on to love even when the person you love is gone. - From Option B.

You may not realize but with each passing day you are building resilience...it will come and go over the days, weeks, months and years. Little by little we are seeing joy come back into our lives, we are laughing and smiling....one reason is because we know Ian would want us to find joy, laughter and smiles again. To continue living. We talk about him, we think about the good and the bad times with him as well as the funny things he did...oh and there were plenty. As we learn to live in our "new normal", know that we see so much in you, know that over the years you will have joy, laughter, good times and bad, sadness, loss, plus much more. There will be hard times as well as easy times. At times the pain is front and center and other times you forget it is even there. The resilience you are building, finding a way to hang on to love even when the person you love is gone, will guide you through so much in life and has and will continue to make you the wonderful, caring person you are.

Monday, May 1, 2017

A photo sent to me by Ian's hospice nurse, Erin, on May 1, 2017 wishing me a happy belated birthday. I laughed and cried at the same time.

Sunday, April 30, 2017

Camp Me Too

On Friday, Brian and I dropped Becca off at Camp Me Too, through Stella Maris Hospice. Camp Me Too is a three-day, two-night camp designed to help grieving children learn ways to explore their grief through innovative tenchiques. A few months back she had participated in a one-day program designed for the same thing. She came home and asked to go to the weekend. We got to the camp, checked her in, got her settled in the bunk and said our good byes in one of the halls. All the campers and volunteers left to start their weekend. We, along with the other parents and guardians, were left with one of the program coordinators. She explained a little bit about the weekend and answered some questions then sent us on our way. 

Sunday morning, we were back at 10am to be reunited with Becca and to find out more about the weekend. Each camper is paired with a buddy...how great. Becca's buddy came from a family of 10 kids (2 sets of twins, she was one of those sets, and out of the other set one had passed away). How perfect of a match. Becca had some break through and opened up to others regarding her story. She connected with her buddy and knows she is not alone in her journey. After we were reunited, the campers and buddies went on a nature walk while the parents and guardians went to the "counseling ring" to hear more about the weekend and get some tips on helping the kids continue their journey. They started the weekend with a secret reveal of the buddies. Saturday seemed to be jammed packed with activities including Drums and musical instruments, nature walks, story sharing, horses and discovery and expression of feelings. The campers and buddies retuned to the ring after their walk and the closing ceremony was had. Each camper/buddy pair came to the center of the circle. The camper said what the best part about camp was as well as one thing they learned from camp. It was amazing to hear what the campers got from the weekend...it's okay to be angry, not to take your anger out on others around you, you don't have to always be happy, being sad is ok, laughing is ok even in an angry moment. Then it was the buddies turn to give something to the camper, each buddy gave their camper a rock with one word on each side. One side was their first impression of them and the other side was a trait they saw in them to hold onto in the future. Finally, they did a butterfly release. Watching all the butterflies up above us was therapeutic for everyone. Becca even said one landed on her by her heart.

We know Becca won't share everything about the weekend with us and that is okay, as long as we know she got something out of it, even the hard parts.


Wednesday, April 26, 2017

An Old Photo

An old photo taken around April 22, 2015.

Sunday, April 23, 2017

Gilchrist Pediatric Service of Remembrance

What a world wind weekend, lots of emotion, ups and downs. Friday night,  Becca went out with Kenzie, her cousin,  and then had dinner with Aunt Susan, Uncle Digit,  Josh and Devin (my sister and family). She enjoyed her time with them and celebrating her birthday along with Josh and Kenzie's. Brian and I stayed home and as best as we could prepared for the weekend ahead. 

Saturday morning, we headed to synagogue to celebrate Wyatt's (my cousin Jamie's son), bar mitzvah. He did a fabulous job. Lots of birthday wishes for Becca. Wyatt's mitzvah project was in honor of Ian. He raised money for Camp Simcha Special. One of Ian's favorite part about camp was opening day. The money will go towards making opening day extra special. Way to go Wyatt, we are so proud of you. 

Around 4pm, there was a knock at the door, a surprise for Becca....Bethany, her best friend. We worked it out that she would surprise Becca by coming over and sleep over. Bethany cane with balloons and presents in hand. Becca had no idea.

We have 5 people who celebrate birthday in the months of April and May; Nana, Josh, Becca, Me and Kenzie. One celebration for all was had on Saturday night. While sitting around having cake, lots of stories and picking on people happened...this added lots of laughs and memories. 

Sunday morning, we (Nana, Pop,  Aunt Susan, Uncle Digit, Kenzie, Josh along with the 3 of us) headed to the cemetery with balloons and a cupcake to celebrate Ian. A candle was put into the cupcake and Becca blew it out. One balloon was tied to his Spiderman flag while the other one was released up to the heavens. A few Ian stories were told with lots of tears. 

We finished the weekend off with Gilchrist Pediatric Service of Remembrance. This was a wonderful and meaningful way for us to end the weekend. Some music, readings and photos of the kids lost over the past 2 years. I leave you with 2 of the readings which hit home with Brian and I. 


My Many Colored Days by Dr. Suess
Some days are yellow.
Some ads blue. 
On different days I'm different too.
You'd be surprised how many ways 
I change on Different Colored Days. 
On Bright Red Days how good it feels
to be a horse and kick my heels!
On other days I'm other things. 
On Bright Blue Days I flap my wings.
Some days, of course, feel sort of Brown. 
Then I feel slow and low, low down. 
Then comes a Yellow Day and Wheeee
I am a busy, busy bee.
Gray Day...Everything is gray. I watch. But nothing moves
today.
Then all of a sudden I'm a circus seal! On my Orange Days 
that's how I feel.
Green days. Deep deep in the sea. Cool and quite fish. That's 
me.
On Purple Days I'm sad. I groan. I drag my tail. I walk alone.
But when my days are Happy Pink it's great to jump and just 
not think.
Then come my Black Days. MAD. And loud. I howl. I growl at 
every cloud.
Then comes a Mixed-Up Day. And WHAM! I don't know who 
or what I am!
But it all turns out all right, you see. And I go back to
being...me.

I Could if They Would by Mattie Stepanek
If they would find a cure when I'm a kid...
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes.
If they would find a cure when I'm a teenager...
I could earn my license and drive a car, and
I could dance every dance at my senior prom.
If they would find a cure when I'm a young adult...
I could travel around the world and teach peace, and 
I could marry and have children of my own.
If they would find a cure when I'm grown old...
I could visit exotic places and appreciate culture, and 
I could proudly share pictures of my grandchildren.
If they would find a cure when I'm alive...
I could live each day without pain and machines, and 
I could celebrate the biggest thank you of life ever.
If they would find a cure when I'm buried into Heaven...
I could still celebrate with my brothers and sister there, and 
I could still be happy knowing that I was part of the effort.