Thank you. Can’t say my wife or me ever felt like much of an inspiration, thank you very much. Gotta tell you though, we often didn’t feel very strong. We just took each day as it came. We learned from Matt’s hope, strength, and love of life how to get through the tough days. Hoped things turned out well for your nephew.
Here in Ohio, you can sign up for the bone marrow registry for free when you donate blood. I’m registered and would be honored to donate. I’m also a proud donor to St. Jude’s Hospital, which provides free care for children with cancer.
RedFrost, my God, I am so sorry for the heartbreak of losing your son. I know you buried a piece of your heart with him. As a parent, I can only offer you my heartfelt condolences.
What a beautiful boy. He was smiling even with the tubes and tape. I was on the bone marrow donor list as a donor but got kicked off when I was diagnosed with a melanoma a few years ago.
No, Redfrost, I don’t think I ever started a thread about Jack. His transplant (at 6 months old) went off without a hitch, but complications from before that are causing us lots of concern now, developmentally. Thanks for your PM.
What a beautiful, beautiful baby. I am so sorry for your loss. The Leukemia/Lymphoma society has just been added to my list of charities for this year. I’m from Wilmington, btw, though don’t live there now; will be thinking of your family tomorrow and hoping that the walk will raise a lot of money and more, especially awareness of registering on the bone marrow donor registry.
HUGS to your family.
That was heartbreaking and beautiful. I thought for one moment to turn it off but thought “if they had to live through this the least my weak self can do is watch it” - but it did make me sad for you. There was a picture I loved that looked like Matt was looking up and laughing - and not just smiling, but belly laughing. I thought “I hope they have that framed somewhere” because it was just so joyful.
Tonight I went to a kid’s birthday party and was a part of (but not the one that had to deal with all of it) going with 14 children ages 3 - 8 to the movies. I had a few times that I got really irritated at the kids, and embarrassed with their antics. I sat back at one point when I was ready to nail a couple of kids to their seats and I thought of Matt. I thought “some people don’t get to be irritated” - Matt made me appreciate it instead of getting pissy with a bunch of kids having fun.
So thank you. I know it is cold comfort if any at all, but his memory is alive way down here with us too. I’m sorry - I wish I could ease the pain more.
That was heartbreaking. My 10-year-old daughter and I both started crying in the middle of that video. He looks so cute and sweet in those pictures. It’s just not fair.
Jeez. I can’t even watch that video on the connection I’m on and I’m still sniffling here. How on earth parents can experience the death of their child without going mad I don’t know. All the best and all my love to you and yours.
I almost didn’t watch it because I thought it would be “too hard” for me, as the mom of a 4-year-old boy and a 6-year-old girl. But then I realized that you didn’t get the too-hard opt out, and I did watch it.
What a beautiful boy. What a heartbreak.
I will keep you all in my thoughts.
Condolences.
He had a magical smile. I’m so sorry for your loss.
I’m sorry for your loss, Redfrost. What a beautiful child.
I just received my tissue typing form and swabs from DKMS Americas in the mail yesterday.
The FAQ that they sent along says:
“It costs $65 to type one person’s tissue. DKMS does not require the donor to cover the typing fee, however we do rely on the support of individuals and corporations to help with the cost.”
If you’re eligible to donate, they’ll take what you can give, or register you for free.
What a beautiful boy, with such stunning blue eyes! Matt just seemed so joyous; some of those photos made me laugh out loud through my tears! I am so sorry for your loss… life really isn’t fair.
Matt charmed everyone he met. In fact, some of the nurses and his doctor crossed that professional line. One of the nurses in particular is still dealing with anger about Matt’s death. Matt loved music, loved to dance, loved to laugh, and loved to give hugs and kisses. In the last week of his life he spent it sitting on a lap (mine, my wife’s, his sibling’s) listening to either my wife’s or my ipod while he colored and watched the Wiggles. All of your condolences and responses are heart warming and encouraging. When I watch the video, its like a punch in the heart. It hurts so much yet brings so much joy to see him again. While putting together the video I realized that there will be no more pictures of him. That was hard. I was pretty fucked up for awhile after that ordeal. Thanks again everyone. It is rewarding and comforting that he is still having a positive impact so many people.
My friend, Nancy, is a pediatric oncology nurse. She’s a joyful, positive person. I asked her once how she goes in every day and deals with what she sees. She said, “Because I consider it an honor to take care of these children. You don’t focus on the disease because THEY don’t focus on their disease.”
Children like Matt are what makes her job so joyful and so tearful.
My dear cousin lost her 3 year son in a drowning accident almost 20 years ago. A few months ago, we were watching a video of my parent’s 25th wedding celebration that took place shortly before he died. And there he was in the video, a little mop-headed boy, running around and laughing. I thought about sending a copy of it to my cousin, but it’s taken her so long to recover from his death that I’m afraid of resurrecting those feelings of despair again. Redfrost mentioned how sad he was that there were no more pictures. And I’m now wondering whether new pictures of Matt would bring him joy or sadness.
Where’d the video go? YouTube says it was removed by the user.
Sorry, my wife cleaned the video up a little. I guess she removed the old one to post the new one. Here is the link to video. If that doesn’t work (it should) you can go to his website.
Send the pictures – my uncle and aunt lost two children to muscular dystrophy, and while it was a really long time before they could even talk about them again, they eventually started displaying photos of them again. They will appreciate being able to see pictures of their child again, believe me.
By new pictures, I meant new picture, not new to me, not found never-seen-before pictures. I would cherish any pictures anyone has of him that I have not seen. By all means, send her the pictures. If you’re still not sure, ask her.
Redfrost, he was a beautiful boy. Thank you for sharing with us.