(photos from past FSMA conferences)
It’s been too long since we’ve written! Sometimes we’re just too busy living life to write about it…
My first experience with the organization Families of SMA was days after Oscar’s diagnosis when I timidly visited their website for the first time. I saw a photograph of two children from behind—a young girl in a power wheelchair with supports holding her head in place, and a little boy walking beside her, holding her hand. This photograph, at that time, made me sick to my stomach. Would that be my little boy? How soon would he not be able to hold his own head up anymore? Also, on that first brief and terrifying visit to www.fsma.org, I read the words, “Life with SMA doesn’t have to be any different,” and I got angry. Really angry. How dare they tell me that? My whole life has just been turned upside down and is quite different from anything I ever expected.
A few weeks later a large package was delivered to our door with an FSMA return address. By large I mean easily two-and-a-half feet high, wide, and deep. I was scared to open it at first. What scary things associated with this new diagnosis could be lurking in this box? But the contents were not scary at all: a bumbo chair, bubbles, nerf ball, squirt gun, jack-in-the-box, a dvd, and a handful of other toys. I was dumbfounded that strangers in an office in Chicago had sent this box of gifts to our family. The generosity itself present in this offering meant more to me than the items, and indeed turned out to be symbolic of the nature of the organization.
Six months later, the three of us, along with my mom, boarded a plane to California to attend the annual FSMA national conference. We were like deer in the headlights arriving at the hotel where over a thousand others were also gathered for the same purpose. But there we met others who were living the same new normal as we were. We found a community that has become like an extended family. Each year now, we look forward to the FSMA conference with great anticipation—a chance to connect with other families affected by SMA, and to learn from the top SMA researchers from all over the world.
Today, I can look at that same photograph that is still on the website and delight in the beauty, the independence, the love that is depicted (and incidentally that power chair the girl is driving is the same model that Oscar uses today). Also, I can find real truth in the words that first made me so angry. When we are able to openly embrace all that comes our way, indeed life doesn’t exactly have to be so different with SMA.
But what does all of this have to do with yoga, you might ask? My friend and colleague, Kristen Zory King, is doing a 30-day Bikram Yoga challenge to raise money for FSMA, in honor of Oscar. For those of you who don’t know about Bikram yoga, it is also known as “hot yoga” because it is done in a 105 degree room. The same 26 poses are performed twice during each 90-minute class. And Kristen is doing it! She’s 16 days into it already! Kristen is keeping a regular blog about her experience and she has an indiegogo page she is using to raise money.
Kristen, during last summer's Harry Potter Birthday party at Writers & Books! Always championing a good cause!
Kristen’s commitment to 30 days of yoga has inspired me. There was a time in my 20’s when I was attending Iyengar yoga classes twice a week. Now I can’t remember the last time I had an exercise routine. Hell, I can’t remember the last time I got any exercise that didn’t involve lifting Oscar. So, I have decided to take on my own yoga challenge this month. I am committed to completing a minimum of 4 minutes of yoga per day this month. Why 4 minutes? This is about how long it takes me to complete two rounds of sun salutation, and that is about all I can concretely commit to. And indeed 4 minutes of yoga a day is making a difference!
Kristen was worried that she set her fundraising goal too high at $500. She surpassed it less than a week into the challenge. I wasn’t surprised. My goal is to see how far beyond her original goal we can go. Double? Triple? Kristen has set some fun parameters for possible donation amounts ($20 vote of confidence, $30 dollar-a day, $52 dollar per pose, $105 dollar per degree). I’d like to offer up my own level of support, the Sally Special: $4 for a dollar-a-minute!
What really matters though, is spreading awareness about FSMA, and the way they are making a significant difference in the lives of so many. In addition to the incredible support they provide through care packages and the annual conference, they have also funded over $55 million in SMA research in the last 30 years. A million thanks to FMSA!
