Thursday, October 20, 2016

A Letter From Peter Parker

Marci, Brian and Becca:

I was so saddened to learn about Ian and am so sorry for your loss.

I hear that many people say I am Ian's favorite superhero.   

I am not really a superhero at all.  I mean look at what I can physically do - I can fly through the city streets and jump building to building.  I have unusual strength and agility.  Even if I fall from the tallest skyscraper I never get hurt.  In fact, since I was bitten by that spider I have never had a need to see a doctor - for anything.  So there really is no risk to the life I lead - its not really heroic at all.

Ian on the otherhand is heroic - incredibly heroic.  He didn't have the physical gifts like me, but he managed to kick butt just the same.  And unlike me, he was always at risk but he pushed through whatever needed to be pushed through anyway.  Now that's heroic.  And that's how I measure who is a hero and who isn't.

In my line of work I always need real heroes to help me and I assure you that Ian will always be included in my web and my adventures.  He will continue to kick butt.

Deepest sympathy and appreciation,

Monday, October 17, 2016

Visiting Ian

Sunday, October 16th, was the 1st day we were "allowed" to go visit Ian. According to Jewish laws, you are supposed to wait until 30 days have passed. So the 3 of us went.

I had mixed feelings about going before, during and afterwards. I am not sure I was ready but then again when would I be ready to go visit my son's is not the way it is supposed to be. The car ride was quiet, just the music could be heard. It didn't take us as long to get there as I thought it would take, I have been to Beth El many times to visit other relatives, so not sure why I thought it would take that long. Seeing his name on the plaque was hard, knowing that my son was in the grave was hard but knowing I have someplace to go visit him was good, knowing I have someplace I can talk to him was good (I know I can talk to him in other places as well). I hope he is happy under his tree, after all, Ian never liked being in the sun much. I am not sure if I found peace, not sure what I found...maybe it is still just to early in this horrible process that is becoming our "new normal". It was good to be able to go, even though I don't know what I got from this point.

I know we will be back to visit him often.

Saturday, October 15, 2016

Obituary from The Baltimore Jewish Times

Young Light Shined Bright
by Mathew Klickstein
IAN ALEXANDER SCHER (Yitzkak Avraham) passed away in his Pikesville home, surrounded by his loving family, on Thursday, Sept. 15 at approximately 7 a.m. Ian was 13 years old.
According to his mother, Marci, Ian had been challenged by myriad health complications throughout his course of his unfortunately truncated but ultimately exuberant life. Wheelchair bound by the time he was 7, it was not until 2012 that Ian was diagnosed with a rare from of muscular dystrophy stemming from a mutation of the VRK1 gene, which would result in a terminal prognosis.
"Even during his post painful days, he was able to smile some and make us all laugh," Marci wrote in a blog post entitled "Rest in Peace," published one day after the effulgent fire of her son's iridescent life ceased to burn.
"His smile was radiant," she wrote the following day. "The light in his eyes shined bright up until the last few days. His spirit was large."
Ian's passions were for Legos, films such as "Tangled" and "Frozen," and nearly all manner television shows. Marci jovially elaborated that "if we lost the internet, we were all in trouble," as Ian loved having the television on as much as possible.
"That was something he still had control over," Marci said. "His eyes were the one thing that never really left. He could always still watch TV."
As Ian's ability to vocalize became more and more strained, he would find other means to communicate his wants and needs by way of movements of those eyes of his or, in the example Marci gave about a certain particularity that did come about during television watching, the use of his tongue.
"Ian definitely didn't like the 'girl shows,'" she said. "He made it clear he didn't want to watch them. That tongue would come out to let us know: "Nope, I don't want to watch that one."
"Ian was every bit a 13-year old boy," beamed father Brian with something of an elegiac chuckle, adding that "not to sound crude," Ian did enjoy his fair share of age-appropriate scatological humor punctuated by a playful predilection for bodily functions.
"To watch him smile like that," Brian said, "it would make me smile, too. Whenever Mom and [Ian's twin sister] Becca would leave the house and it was just him and me, we'd have 'guy time,' and not having to say 'excuse me' would make Ian laugh. It would send him to Cloud 9."
During that final week in extremis, Brian maintained a dynamic of "just being father and son" with Ian, something that had always been important for the family. Brian would roughhouse with his son -- though less so during those last days.
"I would walk over to him and pretend like I tripped and would fall on him," Brian said. "Every little thing like that would bring a smile to his face. Even when I was tired, I never minded doing those kinds of things because I saw the enjoyment it brought to him."
As for Ian's proclivity for Legos, Marci mused this might have had something to do with son's interest in mechanics and science via his one-on-one specialized in-house/hospital schooling. Marci explained that Brian would be "Ian's hands," building various Lego objects such as giant "Star Wars" R2-D2 statues.
"For years, his room was full of Legos," Brian said. "So much so that many of the sets weren't built yet because we ran out of space in his room. Really, up until the last year or so, we were always putting together, taking apart and rebuilding different Lego sets."
"I'd put the book [of instructions] as best as possible in Ian's lap or in a way that he could see it," Brian said. "I'd purposely pull out an incorrect piece to: one, see if he was paying attention; and two, make sure he was involved. I'd joke around with him: "Did you take it? You took it, didn't you?' Of course, we knew he didn't, because he couldn't move. But he'd always smile at that."
Ian would also act as the father-and-son team's quality assurance "spot checker," with Brian holding up the set in progress so Ian could observe it and make sure they were following the guidebook.
Playing video games on their Nintendo Wii system was another favorite pastime of Ian's that he enjoyed with his father.
"I wasn't allowed to play on the Wii with him," Marci giggled. "It always had to be Daddy."
The game that father and son would play most was one involving Ian's favorite superhero, Spider-Man.
"No matter how many times we'd already played it, Ian always wanted to play it again. I could play that game forward, backward, with my eyes closed," Brian said. "Sometime I'd ask if we could play another game, maybe 'Super Mario Galaxy,' but Ian always wanted to play his Spider-Man game."
Everyone in Ian's life was well aware of his fealty for the arachnoid superhero, with Brian noting that no matter how much Spider-Man stuff they had, there was always someone coming over with even more.
Ian's Make-A-Wish Foundation trip in 2010 took him to Universal Studios in Orlando, Fla., where he met his longtime idol, and his adaptive bar mitzvah was Spider-Man themed, with Ian as involved in the service as much as possible, supported by assistance from the likes of his longtime Camp Simcha Special camp counselor Danny Trestman, who has become another member of the family, in Brian's words.
As for Ian's twin sister, Becca, Marci said the two survived the typical sibling rivalry one would expect from a red-blooded brother-and-sister duo. Though Brian said that their family's needful prioritization of Ian's health drove her into "growing up a lot faster than she needed to" and that Ian could "annoy the heck out of her," Becca was also typically "very motherly" and "always up to offer a hand when asked. They had a very special bond."
When the two siblings were much younger, in preschool, they were separated into two classrooms. Ian would leave his own class without asking his teacher to go find Becca in order to make sure he knew where she was and that she was doing all right. Marci, who worked in the same building as her children's early school, said Ian would come wandering into her office for the same reason.

"His soul was old, always needing to make sure everyone else was OK and taken care of," she continued in her blog. "The bonds he had with many were incredible, one everyone will hold onto."

Ian is survived by his mother Marci, father Brian, and sister Becca.

Thursday, October 13, 2016

4 Weeks, 4 hours - By Brian

WOW, has it really only been 4 weeks.  I feel like so much time has passed.  Maybe because so much has happened between Ian’s passing and today.   Rosh Hashana and Yom Kippur as well as trying to get back to what we always call our “new normal.”  What really is normal?  Nothing in our lives has really ever been normal.  Normal would probably to have had two healthy children that could run, laugh, play and do whatever.  Instead of having one child with a terminal debilitating disease.  But that’s what we were given and we enjoyed each and every moment of it.  Ok that’s a lie, we certainly hated many parts of it but Ian was our child, our son, and no matter what we promised to do anything and everything for him as well as Becca.

As I am sitting here at work, I'm trying to keep my mind busy and occupied.  If I don’t, then I know I will lose it and just break down.  Sure you are saying, go ahead break down, its ok to, you’ve been through a traumatic experience.  I'm not trying to hold back my tears.  I just think and feel at this moment I am not sure if I really have many more tears left.  Yesterday, during Yizkor at our Yom Kippur services was the hardest day to have to go through besides Ian's funeral of course.  Having to sit there and mourn for my son, my best buddy, my hero is something that goes against what we all think of as the normal cycle of life.  We were told to make sure to have tissues with us and luckily we did.  It's not a fun service and I know it's not supposed to be.  We walked out saying Bad Yizkor, lol.

So as my title states, 4 weeks, 4 hours.  I can't believe it.  Maybe I still don’t want to believe it.  One struggle I am having day in and day out are the images that are floating around in my head.  I try and try to see images of Ian's great smile, his warm eyes and his loving face.  But the only images I recall at this moment, when I shut my eyes, are those of his funeral, his empty bedroom or of him lying there.  I've been told those images will fade, not disappear completely but will eventually be replaced with those images I just described.  We are just still in a state of shock.  I suppose we are, I don’t know.  I sure hope so because I don’t necessarily like the images I have now. 

I know I'm just rambling but I wanted to get my thoughts down so I don’t forget them.  So if and when you read this, please do me a favor.  Close your eyes for a moment and visualize Ian's happy, smiling and loving face.  Please do that for me since I can't really at this time.  I really appreciate it.  

Wednesday, October 12, 2016

By Brian Scher - September 15, 2016

When Marci and I found out back in late 2002 that we were having twins, we were excited, scared and nervous all rolled together. Of course the usual conversation went to what do you want. I have to admit I did day I need at least one boy. And that one boy I got.

However, today we are here to mourn the loss of that boy. Having a son with disabilities and becoming what Ian did, certainly is not a parents plan, especially as a father. A father looks forward to being able to run and play with a son. To be able to go in to the backyard and throw a ball around and do just about anything boys do. Unfortunately, Ian was not able to do those things throughout his life. Yes he had the ability to run, jump and play in the first half of his life, before the disease really took hold of him and we always had the best of times. From both Becca and Ian jumping on me while wrestling to me picking him up by the back of his overalls and hoisting him into the air.

For those of us who were fortunate enough to have Ian be a part of our lives, I think we can all agree that he made the most of it. He always had the ability to make you smile, to make you laugh and yes even to make you yell and scream. Despite his inabilities to care for himself since he was about 9 years of age, he still kept a smile on his face and made the most out of each and every moment. Sure he had his moments of despair and emotion but who wouldn't in his situation. He endured more than any person should ever have to endure in life.

G-d didn't rob Ian of life. He allowed him to live it to the fullest and experience as much as possible. Ian did amazing things during his short time here from going to Disney World a few times, meeting the entire Baltimore Ravens football team to being able to throw out the first pitch at an Orioles game. We were all allowed to be a part of his life and experience everything with him.

Over the years we have constantly told Ian how much we love him, how proud of him we are and what an inspiration he is to all he meets and even some he has never met. All your support over the years has also helped Marci, Becca and myself deal with the day in and day out struggle of raising a child with a rare genetic disease. Marci and I also have many thanks to all our doctors over the years that never stopped fighting to figure out what was going on with Ian. I am not sure Marci and I could've really accepted Ian's passing without having that knowledge but at least we do not have to live without that question being unanswered.

As we have told Ian we will be ok down here. That was true and at the same time that wasn't true. Initially we are and we will be devastated at our loss. Our house and our lives will feel very empty for the time being and the near future. However, the truth is eventually we will be ok. I'd like to read something that I have been carrying around with me since my grandfather passed away back on September 15, 20 years ago. It's called

When I am gone, release me, let me go.
I have so many things to see, and so you mustn't tie me to yourself with tears.
Be happy that we had so many beautiful years (or moments shared).
I gave you my love.
You can only guess how much you gave me in happiness.
I thank you for the love you each have shown.
But now its time I travelled alone.
So grieve for me for a while if grieve you must.
Then let your grief be comforted by trust.
Its only for a while that we must part, so bless the memory within your heart.
I won't be far away, for life goes on.
So if you need me, call and I will come.
Thought you can't see or touch me, I'll be near.
And if you listen with your heart, you'll hear all my love around you soft and clear.
And then, when you must come this way alone, I'll greet you with a smile and say "welcome home"

Again today we are here to mourn the loss of our amazing son, Ian. But instead of crying and the tears, I want all of us to smile, laugh and tell stories about Ian. Talk about what he meant to you, how he made you feel, and the things he did. Besides the disease, we all know he was very much every bit of a 13 year old boy. He enjoyed things that boys his age do. He enjoyed legos, playing on the Wii, being silly and just about anything else. Sure he had his moments, but who doesn't and he, more than anyone, was most certainly allowed to have them.

Ian, today you are free. Free from the machines, free from all the meds, free from all the treatments to make you and keep you feeling good. Today, everything you have lost over the years that was taken away from you comes back to you. Go, run and play. Do all the things you have not been able to and can now once again do. We will most certainly meet up again one day. Keep near the phone since you asked if there was one up in Heaven, because mommy, Becca, and I will be talking to you soon and often. As well when we are ready we will call and let you know we are on our way to be with you again. Just because you are not with us physically any longer, you are and always will be with us in our hearts, our minds, and our very souls. Our family of four will always be a family of four. Becca and you will always be twins and brother and sister. You will always be mommy and daddys little man. Finally you will always be my superhero and nothing will ever take that away from me.

I love you son and send you onto brighter things.

By Becca Scher - September 15, 2016

I remember when we were young someone would plot something and the other would do it.
Having a twin is the best thing in the world. Ian would always go on these movie obsessions and one was Frozen, so no offense to Elsa but these is nothing to "Let it go" here.

Ian touched every person he met, just take a look around the room.

We will always have him in our hearts. I want to thank everyone for being here.

In Loving Memory of Ian Scher - September 15, 2016 - 12 Elul 5776

By Rabbi Ron Shulman

We cry with Ian's loving and devoted family. We are upset and grief stricken with them. With torn hearts and profound sorrow, we gather together.

Ian's presence fills this room with the love and courageous spirit all of us admire about him. Our presence fills this room because, from no on, it must always be this way.

We will be present to you Marci, Brian, and Becca, Sheila and Ron, Sharon and Herb, Susan, David, Eric, Michael, Mackenzie, Josh, Devin, Kirsten, Noah and Hayden so that you will discover, as you need it, the support and comfort all of us can offer you. We are with you as your extended family and the friends Ian touched in the days and experiences of his compelling life. Ian drew us all to him. He brought us together and now holds us close. 

Embrace each other in love and with strength because here we all know the delicate nature of being human. We are each exposed and vulnerable in life. Being human is precious and precarious. Through one another we feel G-d's comfort as we extend our comfort and compassion.

Like Spiderman Ian was a superhero. Except Ian was the real deal, our genuine hero whose zest for life and infectious smile inspired us. Spiderman's creators gave him "spider-sense." The ability to react quickly to the world around him and to overcome obstacles. 
G-d endowed Ian with "Ian-sense." The ability to react quickly to us all as to life with his sense of humor, his courage and tenacity, and above all with his love to overcome obstacles. 

"Who is a hero?" asks Ben Zoma, a first century rabbi. "Ben Zoma answers by quoting from Proverbs. "A person who governs his own spirit" is a hero. Ian is a superhero because he taught all of us about personal strength and character. He helped us to be patient and kind. He brought us to a deeper appreciation of compassion and understanding. Ian's life taught us all about life. We are heroes when we live to the best our abilities in response to every challenge and opportunity.

On different occasions Ian would ask about his circumstance. In every conversation or relayed message, Ian grew to recognize that life is about love and connection. Life is about courage and perseverance. Life is about embracing the gift of who we each are no ands, ifs, or buts. Ian's life made a lasting impression, Ian's life exceeded his own hopeful expectations. He was a bit stubborn that way. Ian was a boy who lived on his terms and not by the limitations nature imposed on him.  

Before his Bat Mitzvah celebration I asked Ian to describe himself to me. He said he was funny and caring, and had a big smile. I told him he was also brave and very cool. At his Bar Mitzvah, I told Ian: You are G-d's precious and special gift to your family and us all. Your smile and good nature let us know how kind and fun you are, how sensitive and sweet you are, how precious and special you are. You are more a superhero than anyone else! You take every opportunity you can, and you succeed because you are so determined and brave." In his eyes, I saw Ian's approval that he became who he wanted to be. 

Becca, at that same moment, as you became a Bat Mitzvah I reminded you that you have grown to be a sweet and caring young woman, someone who is friendly, creative, and busy. Because you balance your sensitivity for Ian with your own self-confidence, you were your brother's partner. Everything good we say about him you helped him to become. You are precious and pure and grateful for your family. All of us here believe you always will be. 

Like Becca, Ian is, as he was, precious and pure. Blessed with a feeling soul and gentle heart, what we might describe as an old soul, Ian lived a meaningful inner life for a young person. That's how he helped his family, friends, teachers, and caregivers help and support him. In our profound sadness today, we are grateful to everyone whose care of and love for Ian enabled the fullness and goodness of his life.

Marci and Brian, you are also superheroes. Your gracious, generous, and unconditional love gave Ian and Becca every precious hope and opportunity. It's no wonder Ian's spirit was so vibrant. He's your son. He inherited and demonstrated your joy for life and your ability to love so openly, compassionately, and honestly.

Even in your unbearable sorrow today, Marci ad Brian, I pray you will come to remember with pride and joy the quality and intensity of the life you enabled Ian to have and to enjoy. Beside you and sustaining you in this task, as always, will be your loving families and the rest of your extended family who with all of us your friends embrace you and carry you through the burden of your, and our, sorrow.

As Ian's life demonstrates, we stand humble and vulnerable before the risks and frailties of life. That's why we need to sustain and support each other every day. Over time we may imagine what Ian might have experienced in the days and years to come. Ian's entire family most certainly wishes to know. Remember that Ian's bright, smiley face and love of life remain far more important then what we all feel at this sad moment. The wonder and goodness of his life will always be a part of your own - and all of us will help this to be so.

Today we call upon love in the face of life's mystery and this tragedy. We look for the light of day that it not hide from us during the darkness of this difficult night. We look for hope amidst our despair. We cherish the days that were Ian's. They are all a compelling source of strength and significance, of joy and happiness. Even wanting so many more, be grateful for every day you shared with Ian.

Ian gave you a gift. More years and time than at first imagined. Deeper love and joy than at first appreciated. More enduring memories and experiences than at first expected. Believe with me. The courage, love and goodness of Ian's life will live on in the hearts of his parents, his sister, his grandparents, aunts and uncles, cousins, family members and friends. Through our sorrow and our bonds we will discover the same resilience and blessings of G-d that Ian knew.

G-d endowed Ian with "Ian-sense." The ability to live with his sense of humor, is courage and tenacity, and above all with his love to overcome obstacles. Like Spiderman Ian was a superhero. Except Ian was the real deal, our genuine hero whose zest for life and infections smile will always inspire us.