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This is really the only subforum on [H] that I participate in and, while I do have access to General Mayhem, I've decided to share this here as most of you "know" me.
One week ago, on Tuesday October 6th at approximately 5PM, our little boy Damon died suddenly. He was only two years old. (775 days to be exact... I had to look) As many of you know, my son had a medical condition called Spinal Muscular Atrophy. While this had a huge impact on his life, we do not believe this is what took him away from us. He was happy, healthy and feeling great that day. Then he was just gone. He died in a place he loved to be, a childrens center here in town (my wife was nearby in the same building), and the last thing he did was blow bubbles, which he absolutely adored. We are told that he fell asleep, was moved inside and then he woke up, seemed a little disoriented and started fussing. Someone went and got my wife, but when she got there a couple minutes later she was told he had just fallen back to sleep and that she could go finish up if she'd like. When she came back ~15-20 minutes later she discovered he wasn't breathing. A nurse who was there performed CPR and defib. Emergency services were called, he was taken to the ER, but we found out later they were never able to start our sweet little boys heart again.
I've cried more than I've cried in years. Right now I just feel numb. Some hours are better than others. It still seems unreal that our little boy is gone. I keep expecting to hear him say "Hi Daddy!!" or ask for a bottle, a drink, his pacie, etc. Every time his big brother comes into the room I expect to hear him say "I go brother!". While I may hear this in my head, my ears hear everything but.
We gave Damon an amazing life in his far too short 775 days. He also taught me that I was a better man than I thought I could be. I was always terrified of having a disabled child and never thought I could raise one. Then a funny thing happened. After dealing with the shock of learning that our new born only had nine fingers instead of the expected ten (his right middle was completely missing... he would've been able to do the Live Long and Prosper sign like a boss!) I got over it. Sure, it bugged me a little now and then, but it wasn't important. Then at six months his legs suddenly stopped working, literally overnight, as if a switch were flipped. One day he could kick his legs like any baby, the next they were like limp noodles. At nine months we were told he had SMA and that it was only going to get worse. I ranted, raved, raged and cursed everything I could think of. Then I got over it. Yes, I worried about the future, but for the here and now I didn't care. He was my little boy. I loved him. We all did.
In his far too short life he went all over the place, did all sorts of things and we made sure to help him experience things as much as humanly possible despite his disability. We could've taken the easy way out and left him in his stroller wherever we went, or just plopped him in front of the TV and ignored him, but we didn't. We couldn't. He was far too bright, happy and social to do such a thing to. (Not to say he didn't watch a lot of TV, he did. It was hard for me to do at first, but when you have a child who cannot move on their own you have to find things to keep them happy. However he was rarely ever alone and we made sure what he was watching was worthwhile. His vocabulary was amazing. And it wasn't just us being proud parents either; his therapists (PT / OT), assigned educator (to ensure his condition wasn't effecting his mental abilities) and random people were always blown away by him. He could count reliably to 30 on his own and counted to 100 with a little help from his big brother. He knew his ABCs. He LOVED to sing. Heck, he could even sing chunks of "All about that bass". He also knew instinctively how to alternate parts while singing ABCs or things like Twinkle Star. His muscles may have been weak, but his brain was strong.
Most of all though, nothing beat his personality. His smile lit up a room and his eyes just drank you in. His face was extremely expressive. When he wanted something, or was answering yes, he'd wiggle his eyebrows at you. He had women wrapped around his little finger and flirted shamelessly with pretty women. He was a chick magnet. I loved it. His mother loved it too. (And no, you pervs, she's not like that!)
We don't know why our little boy was taken from us so suddenly and so completely unexpectedly. There's a lot of pain. A lot of questions. A lot of anger, hurt and frustration. The best advise people have given me is "one day at a time". Yes, it sounds trite, but it's true. Some days are better than others. Some days are worse. Losing my mind won't bring my boy back and the logical side of my mind usually manages to stay in control because of this. Thankfully it has gotten to the point that I can look at the multitude of photos and the invaluable videos of him talking, singing and just being him. Now we can hear him say "Hi Mommy / Daddy" and sing whenever we need to. Saw a "Hi daddy" one today. A few days ago that would've brought me to tears. Today I was able to look at him and say "Hi buddy. I miss you." And I do.
I genuinely wish there was a project that focused on SMA or other motor neuron diseases. Hopefully someday they will.
Thank you for reading. Writing this helps. Sharing some of his story and little bits of his life helps even more and helps keep his memory alive with each person who reads it.
For those that are inclined, here are a few photos of him. They're all pretty large (resolution wise at least) so you're forewarned.
Damon - Easter 2014
Damon and his Ernie
Damon smiling
One week ago, on Tuesday October 6th at approximately 5PM, our little boy Damon died suddenly. He was only two years old. (775 days to be exact... I had to look) As many of you know, my son had a medical condition called Spinal Muscular Atrophy. While this had a huge impact on his life, we do not believe this is what took him away from us. He was happy, healthy and feeling great that day. Then he was just gone. He died in a place he loved to be, a childrens center here in town (my wife was nearby in the same building), and the last thing he did was blow bubbles, which he absolutely adored. We are told that he fell asleep, was moved inside and then he woke up, seemed a little disoriented and started fussing. Someone went and got my wife, but when she got there a couple minutes later she was told he had just fallen back to sleep and that she could go finish up if she'd like. When she came back ~15-20 minutes later she discovered he wasn't breathing. A nurse who was there performed CPR and defib. Emergency services were called, he was taken to the ER, but we found out later they were never able to start our sweet little boys heart again.
I've cried more than I've cried in years. Right now I just feel numb. Some hours are better than others. It still seems unreal that our little boy is gone. I keep expecting to hear him say "Hi Daddy!!" or ask for a bottle, a drink, his pacie, etc. Every time his big brother comes into the room I expect to hear him say "I go brother!". While I may hear this in my head, my ears hear everything but.
We gave Damon an amazing life in his far too short 775 days. He also taught me that I was a better man than I thought I could be. I was always terrified of having a disabled child and never thought I could raise one. Then a funny thing happened. After dealing with the shock of learning that our new born only had nine fingers instead of the expected ten (his right middle was completely missing... he would've been able to do the Live Long and Prosper sign like a boss!) I got over it. Sure, it bugged me a little now and then, but it wasn't important. Then at six months his legs suddenly stopped working, literally overnight, as if a switch were flipped. One day he could kick his legs like any baby, the next they were like limp noodles. At nine months we were told he had SMA and that it was only going to get worse. I ranted, raved, raged and cursed everything I could think of. Then I got over it. Yes, I worried about the future, but for the here and now I didn't care. He was my little boy. I loved him. We all did.
In his far too short life he went all over the place, did all sorts of things and we made sure to help him experience things as much as humanly possible despite his disability. We could've taken the easy way out and left him in his stroller wherever we went, or just plopped him in front of the TV and ignored him, but we didn't. We couldn't. He was far too bright, happy and social to do such a thing to. (Not to say he didn't watch a lot of TV, he did. It was hard for me to do at first, but when you have a child who cannot move on their own you have to find things to keep them happy. However he was rarely ever alone and we made sure what he was watching was worthwhile. His vocabulary was amazing. And it wasn't just us being proud parents either; his therapists (PT / OT), assigned educator (to ensure his condition wasn't effecting his mental abilities) and random people were always blown away by him. He could count reliably to 30 on his own and counted to 100 with a little help from his big brother. He knew his ABCs. He LOVED to sing. Heck, he could even sing chunks of "All about that bass".
He also knew instinctively how to alternate parts while singing ABCs or things like Twinkle Star. His muscles may have been weak, but his brain was strong.Most of all though, nothing beat his personality. His smile lit up a room and his eyes just drank you in. His face was extremely expressive. When he wanted something, or was answering yes, he'd wiggle his eyebrows at you. He had women wrapped around his little finger and flirted shamelessly with pretty women. He was a chick magnet. I loved it. His mother loved it too. (And no, you pervs, she's not like that!)
We don't know why our little boy was taken from us so suddenly and so completely unexpectedly. There's a lot of pain. A lot of questions. A lot of anger, hurt and frustration. The best advise people have given me is "one day at a time". Yes, it sounds trite, but it's true. Some days are better than others. Some days are worse. Losing my mind won't bring my boy back and the logical side of my mind usually manages to stay in control because of this. Thankfully it has gotten to the point that I can look at the multitude of photos and the invaluable videos of him talking, singing and just being him. Now we can hear him say "Hi Mommy / Daddy" and sing whenever we need to. Saw a "Hi daddy" one today. A few days ago that would've brought me to tears. Today I was able to look at him and say "Hi buddy. I miss you." And I do.
I genuinely wish there was a project that focused on SMA or other motor neuron diseases. Hopefully someday they will.
Thank you for reading. Writing this helps. Sharing some of his story and little bits of his life helps even more and helps keep his memory alive with each person who reads it.
For those that are inclined, here are a few photos of him. They're all pretty large (resolution wise at least) so you're forewarned.
Damon - Easter 2014
Damon and his Ernie
Damon smiling
