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.

Wheelchair Accident #2

A couple months ago, Lauren rear ended Kyle while they were racing around the house and smashed her foot, which was unprotected and hanging off her foot plate. She was bruised, but not broken.

Then, a few weeks ago Kyle was the subject of the wheelchair hazards. The accident involved him being loaded onto the school bus. It was nobody’s fault--a complete accident—but it resulted in three broken Kyle toes. He’s mostly healed now and has been such a trooper, but he seems very averse to getting back into his chair.

Keep in mind, he’s only three. He’s not a proficient driver on a good day anyway. But since his accident I just cannot convince him to get back into his chair. When he goes to school, he has no choice—he’s in his wheelchair. But at home all he wants is to sit in his high chair and not be moved. I literally have to push his high chair from the kitchen to the play room or wherever he wishes to go. I know at this point that he’s not in pain, so I suspect he’s just afraid of his wheelchair.

How to get him over his fear and back in the saddle? Or the chest harness, as it were? Anyone been there done that?

The whole thing pretty much blows chunks.

What I Wish I Wouldn't Have Said.

I was at Walmart the other day, and I had the twins in their usual spots in the shopping cart--Lauren up front/top, and Kyle in the lower big basket area sitting in his Bumbo.
A SUPER sweet lady with three of her own kids in tow stopped to ogle the twins, share her own story of her twins, and then comment on how good my twins were in the shopping cart. And then she kept on. She asked how old they were, how she couldn't believe how lucky I was to have three year olds who aren't running amok, how well-behaved they were in the shopping cart, etc. I didn't know whether to tell her or not. And so I did.

As it turns out, there's not much shittier than telling a totally well-intentioned fellow mother that the kids she thinks are so well-behaved are only sitting still because their bodies don't allow them to do otherwise. It blows chunks, even. She back pedaled and apologized and she felt so bad, and I tried to tell her it was okay, I understood and I don't feel bad and neither should she, but she had to go because her kids were dragging her and my cashier was ready for me but all I wanted to do was grab a coffee with her to swap fun twin-mom stories and make sure she knew that she didn't offend me.

So if she's reading this: you didn't offend me, my friend. I like it when adults talk to me. And I am always happy to talk about SMA and my twins, and my oldest is who is a model helper and will make an excellent babysitter one day. I never intended for you to feel bad at all, and I am always happy to hear of the fun stories and achievements of others' children. It makes me sadder to think that you felt sorry for choosing to talk to me. Please talk to me again, if you see me. You can't miss me--I travel with a talking circus (the children). I hope I see you again.