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Monday, November 22, 2010

This is Why I Walked.

One upon a time, a beautiful newborn boy was diagnosed with a terminal disease. His parents did everything in their power to advocate and care for him, so despite the horrific rate or mortality, he survived longer than many with his disease. When he was two years old he was granted his Make A Wish trip. For nearly a week, he and his family—including his newborn baby sister—enjoyed Disneyland in that magical way to which any family with young children can relate. Last week, Jonas and his family returned from their amazing Disneyland vacation. A couple days later, Jonas caught a cold. It quickly settled into his lungs and he became critically ill. On Thursday, November 18, 2010, Jonas Coleman passed away. A week after his Make A Wish had been granted and a week before his third birthday.
The day after Jonas died, my own three year old baby girl found herself in the hospital. She’d had a cough for days before that, but after lots of albuterol and Cough Assist she seemed to be on the upswing. In the end her cries of an earache convinced me that something was really wrong, so I casually drove her to Urgent Care where she began vomiting, aspirated, and her O2 sats plummeted while her heart rate and respiratory rate skyrocketed. We were only in the building for three minutes when the staff called an ambulance to take us to the hospital. Lauren improved quickly the next day—despite fighting what we know now was pneumonia—and we don’t know why she got over it so fast. But her timing was uncanny, given Jonas’ passing just the night before.
These kids are so fragile when it comes to their respiratory systems. We do everything we can to keep germs away from them while allowing them to live full lives, but we can’t shield them away from all of the bad stuff all the time. It’s a fine line, and as a parent it’s an exhausting one to manage.

This is why we walked yesterday. Lauren was sick in the hospital for the 5th Annual Walk N Roll To Cure Spinal Muscular Atrophy. Jonas had SMA. Lauren and her twin brother Kyle have SMA. And Jonas’ newborn sister, Maggie, has SMA. I once heard some expert say that SMA is the most common rare disease they’ve ever seen, and my own experience supports this. The twins were diagnosed with SMA two years ago. I can no longer count or remember the names of the babies who have died of SMA since then. For a while I could, but the volume of souls affected by this terrible disease is so high that even I can’t keep up. All of these kids, individually, are why I walked yesterday. Our Team Double Trouble raised over $2,000 for the cause, and my personal friends contributed raffle prizes which collectively raised another $500+. I used to think that SMA only affected us—our family, our kids, our pocketbook. It felt so isolating back then. Isolation in such a severe situation was overwhelming. But it feels good to know that we’re raising awareness in a big way—and raising money for the cause--and so MUCH money, and in such a rough economy. Thank you from the bottom of my heart, everyone! xo

Tuesday, November 16, 2010

Walk N Roll 2010, Baby!

This Sunday will be our second year raising money for the Families of SMA Arizona Walk N Roll. FSMA serves as a critical support system for families facing the devastating diagnosis of Spinal Muscular Atrophy--they fund critical research for treatment and cure for this type of muscular dystrophy, which affects newborn babies the hardest. Half of babies born with this incurable muscular disorder die before age 2.

When strangers strike up a conversation with me about the kids and their disease comes up, they usually ask me if they can walk--they are in wheelchairs, so while I think the answer would be obvious I still find the patience to explain that not only can they not walk, but they don't have the muscle strength to sit up, roll over, lift their arms to comb their hair, or cough. What they lack in physical strength they make up for in charm and intelligence, but the fact remains that they will live their lives dependent on wheelchairs and caregivers and that just sucks.

Families of SMA was a key resource for us when the twins were first diagnosed with this terminal disease at age 16 months. FSMA sends "newly diagnosed" care packages to new families, put us in touch with other local families on whom we can rely for support, host a message board forum so that families can organize ourselves network and rely on our worldwide counterparts for support, directly fund cure-based and treatment-focused research, and compile summaries of laboratory and clinical research in layman's terms for the families.

FSMA is the very definition of "a good cause" and if you have a few bucks to throw to it, I'll take them. If you do or don't, the fact that you're just aware of the disease that defines us now is a win, as far as I'm concerned. Thanks for all your support over the last two years--I feel like a broken record saying that all the time, but it's true. Managing this stressful life in a vacuum, with nobody to listen to me or hug me or bring me bottles of wine, would blow chunks.

Tuesday, November 2, 2010

Not a Pity Party. But Ugh.

Me: Is there anything you can't reach anymore? You're tall enough for all the faucets and shelves now--we should get rid of this step stool.

Jenna: But in case someone cures SMA soon then Kyle and Lauren can use it when they can walk. We should keep it a little longer.

Sometimes--sometimes it hits me right. here.