It's been a long week and we miss our little guy terribly, but both of us have reached a certain peace. It's an uneasy one to be sure, but every moment of the day isn't filled with terrible aching (just every other).
We want to thank everyone that has helped out so much over the last year and the last week. It's a journey we never could have made without friends along the way. Your pain was palpable as we said our goodbyes to our angel.
I think the hardest times to come are going to be during those still, calm hours when we are by ourselves.
It's so quiet.
It's hard to imagine that the Darth Vader whoosh-chhhhh of the oxygen concentrator would be a sound a person would miss - but if we were hearing it, it would mean Ollie was still with us. We are making progress, but it's not going to be easy.
I woke up this morning around 5:45am - around the same time we knew for sure he was gone on that awful day a week ago. Hearing an EMT say "there's no pulse and no sound from the heart" is not something any parent should ever have to experience, least of all about their one year old.
Over on Alexa's blog, she mentions the great tragedy in death of "the snuffing out of a whole personality, and the world spinning on as if that personality never existed".
You can feel that process already as we all head back to our homes and we prepare to head back to work. Ollie will always have a place in our hearts - a huge one full of light and sadness and joy and shade - but his presence was so ephemeral that the rest of the world barely knew he was here.
His mom and I are determined to make it known. We'll continue spreading Ollie's story and the story of the countless other SMA children taken by, or living with, this disease. Doctors and OB/Gyns and Genetic Counselors all need to know more and need to know it soon. Too many do not. Changing this means that Ollie's life might put a little hiccup in that spin.
We love you Oliver - you were one of a kind.
Monday, August 10, 2009
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This is one person who never knew Ollie, but has been touched by his life.
ReplyDeleteI don't know his parents, but I do know this, they are strong, they are loving and they are kind people.
The world is a better place because Ollie was a part of it, even if for a short period of time!
My thoughts and prayers are with you as you go throught this difficult time.
With Christian Love,
Susan Triplett
Ollie touched more hearts in his brief life than many of us ever do; and he continues to do so through you. He was little, but his impact on the world was anything but.
ReplyDeleteI am so terribly sorry to hear of your loss. My son Cornelius, or Case as we all called him, lost his battle to SMA when he was 10 months and 10 days old. It is something that NO parent should ever have to go through. My thoughts and prayers are with you as you continue your journey through SMA without Ollie. If you ever need to chat, stop by my blog or caring bridge to get contact info. God Bless!
ReplyDeleteAshley
www.caringbridge.org/visit/corneliusbrewer
www.ashleyjobrewer.blogspot.com