Written August 2011
Everyone has their secrets, their undesirables, the things they don’t like to share. Well, I am no different and my secret is out.
My husband has ALS, yes, that fatal, degenerative, horrible disease that slowly disables almost every single muscle in your body, till the only thing left is your two pupils that can dilate.
It didn’t start as a secret, it wasn’t something we were hiding, or trying to hide, or even wanted to hide, but alas, I wanted to forget. He was diagnosed over 3 years ago, when it was made he was still fully functioning, except his hockey skills were quickly going downhill. Time passed, we traveled, lived, had a baby, the baby turned into at toddler and now life is getting harder.
He falls, he trips, he can’t write, has trouble typing, it’s difficult to eat, to walk, to talk to do basically anything and everything. People notice, they stare, they gawk, and I want to scream but I cry instead. I want to do anything but accept the fact that maybe I won’t have a husband in another 3 years, and that the journey is only going to get harder.
Every second is a new chance, every day a new day, and we have learned to live each one to it’s fullest, enjoy our daughter, love our family, just be. We’ve also learned to let it out, to talk to share. The catalyst for this sharing has been the ALS Association and their annual fundraiser the Walk to Defeat ALS.
Last year we thought about the walk, we talked about it and decided, no. We weren’t ready to share that much, because really, we still didn’t know who knew. It’s rather hard to spring the news on people, you can’t just start up “hey, by the way, Colton has a degenerative motor neuron disease, ya, it’s fatal” or “pass the salt, oh ya, we have ALS”. It’s not something that’s easy to share. It feels like a rock lodged in your heart that you can’t shake out. And telling a friend or co-worker is not easy, it’s hard to bring up. So we have mostly kept it to ourselves, family and a decent sized circle of friends. Now we are going public by fundraising for the Walk to defeat ALS, it is frightfully scary, but we’ll survive.
I was intending to post this message last year! But alas, I didn’t have the guts. Now I do.
Since I wrote this a lot has changed, we are now fully “out” about Colton’s ALS. We made a team and raised $11,000 dollars last year for the ALS Association. It wasn’t easy but with our amazing family for support and friends coming from all around we did it. I’ve also been able to share more, this term I stood in front of 47 of my classmates and told them about Colton & his ALS, without crying! This year we’re going to do the walk again and hope to raise even more money for ALS research and support, but we need your help.
Please join us on September 9th 2012 at the Southern Oregon Walk to Defeat ALS in Medford at Hawthorne Park.
http://web.alsa.org/site/TR/Walks/OregonandSWWashington?team_id=214921&pg=team&fr_id=8223 Click on the link to see our page, join our team or donate some money!
Thanks for your support!