Barry Gene Simon....3/30/94 - 9/29/07
One year ago, we lost someone very special to us. Barry Simon, age 13, died of complications related to Fanconi Anemia. I cannot believe it has been an entire year since this ray of sunshine passed away from this world. We miss you, buddy. Madelyn is hurting with the memory of her good friend as well. Please keep her in your prayers this week. Anniversaries like this are hard.
This is a long post, but I wanted to put it up here. I wrote this email to friends and family last year, upon learning that Barry had moved on to his glorious place in heaven.
Peace and love to all those reading...and please pass this post along to others...everyone could benefit from knowing Barry.
I carry the story that Vince Devlin wrote about Barry's funeral around with me. It was such a touching, poignant tribute. If you'd like to read it, here is the link:
http://missoulian.com/news/local/article_173ef2d8-9cc1-58f4-9c65-c98993346282.html
10/1/2007
It's late on Sunday night. Many of you in Missoula have by now likely heard about the passing of Madelyn's friend, Barry Simon. Barry passed away on Saturday afternoon from complications related to Fanconi Anemia, a genetic blood disorder he was diagnosed with in 2002. Barry left Missoula in August 2005 to go to Seattle Children's Hospital in order to undergo a bone marrow transplant which we hoped would extend his life well into his 20s or 30s. Instead, it gave him two more years.
Many of you included in this email participated in a fundraiser I did back in July 2005 to help his mother, Cindy, with the move to Seattle. I wanted to take a moment to again thank you for those contributions.
Madelyn kept a pretty active correspondence with Barry during his time in Seattle. Most times he couldn't write back, but he routinely called and left messages for her on the answering machine. Madelyn and I were able to visit Barry when we were in Seattle last May (these photos are from that visit). He was in high spirits at that time, despite having been discharged from the hospital (once again) only three days prior. We raced remote control cars around the Ronald McDonald House complex. He refused to use his wheelchair in front of Madelyn and later told me (when she'd gone inside to retrieve something), "I don't want her to know how sick I am." She told him not to be silly, and pretty soon they were racing his wheelchair in the complex instead. It was also during this visit that he said he wouldn't undergo another bone marrow transplant if the time came, not because he was afraid of the procedure but "because it's too hard for my mom to watch me be so sick". He doted on Madelyn during this visit and gave her several things that people had sent to him to keep his boredom at bay. When Madelyn told him he didn't need to give her anything, she should be bringing HIM things, he said that he had received so much from so many people that he wanted to be able to give something back to someone. Earlier that year, we had sent him a University of Montana sweatshirt signed by all the 5th graders at his elementary school. He decided that he would sign one of his sweatshirts, "Love Barry" and give it to Madelyn to wear back to school to show his thanks to everyone. To this day, I believe that he is the one and only person who could get my daughter to wear something other than a Pittsburgh Steelers jersey.
Barry came home to Missoula in early September, after he and his mother decided that he would forego any further treatment for the disease that had ravaged his body. Madelyn and I were unable to visit him until a couple days ago, as we were both battling colds. We were with him for about an hour on Friday night. He was very tired, and unfortunately we arrived just after he'd taken a sleeping aid, but he fought like the dickens to stay awake to talk to us. Madelyn wore the Seahawks sweatshirt Barry had given to her, and to listen to the two of them you would have thought he'd been in school with her all along, dropping names and talking about friends they had in common. Family friends were at the apartment painting Barry's room black, at his request. He said that his eyes were so sensitive from the disease and the rounds of chemotherapy that he just wanted to be able to open them and have it be dark. And he had beautiful eyes. As painful as it was to watch these two young people carrying on this conversation knowing that one of these lives would soon end, it was one of those moments where as a mom I felt very proud and amazed at watching the person my daughter has become and I know that Barry has brought out a side of her that I think even she didn't know she had. He reassured her repeatedly that he was o.k. He asked for and received repeated hugs from us and he and Madelyn held hands as they chattered away. It was tender and bittersweet, and my heart swelled and burst. The unfairness of this can be overwhelming.
And, ever the charmer, as we were leaving and thought he was sleeping, his eyes popped open and he said, "um...Madelyn, so do you have a boyfriend?" She responded with, "Nope, I'm a single girl". He smiled, closed his eyes, and said "we'll have to talk". And with that, he fell asleep.
Barry died the next afternoon, curled up in his mother's arms while the two of them took a nap together. Just before they fell asleep, Cindy told him it was o.k. for him to go to heaven. He had replied, "Mommy, I'd get there faster if I knew how."
This was an amazingly special young man. He was always positive, always cracking a joke, always earnestly grateful for anything he received. I think he's the one person I've met in my lifetime that I could describe as truly selfless. We will miss him.
Thank you again for giving your support to Barry and his family during this time, or for taking a moment to remember him today.
If anyone would like to make a donation to a worthy charity in Barry's name, I would suggest an organization called Soulumination. It is based out of Seattle and started by a photographer named Lynette Huffman Johnson. This foundation takes photographs of children and families facing life threatening illnesses. They photographed Barry and his family in October 2005. The do amazing work and continue to branch out at hospitals around the country. Some day I hope to be among their volunteer ranks. You can see Barry's gallery and find out more about the organization at http://www.soulumination.org/.
Please feel free to forward this email to anyone who might want to hear about Barry. Thanks again.
In love and peace,
Maureen
Barry Gene Simon....3/30/93 - 9/29/07
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