My nine-year-old son, Liam, has a neuromuscular disorder called Spinal Muscular Atrophy Type 2. He was diagnosed when he was 14 months old; we bought him his first power chair just 6 months after that. More than seven years later, he still uses the same chair (with modifications for his growth), a SnapDragon from DragonMobility in England. It’s an incredible piece of equipment that allows Liam to access and explore his environment as fully as possible. His Snappie has an elevator that lets him, by himself, go down to floor level and back up again – to play or to pick something up. He can race around outdoors. He can go on a bumpy path to pick blueberries in the summer. This type of engagement with the world and the people in it is priceless; it has helped make Liam the happy and outgoing child he is today.
This is not the first time we've chosen to reach out to a larger community to ask for financial help. It's difficult to ask, but we all need help, in one form or another, from time to time. Three years ago, I asked for help with a bathroom remodel in our home. In just two weeks, $14,000 was contributed – via my blog, twitter, and word of mouth – and now we have a fully accessible bathroom. It has made a huge difference in our every day lives.
And so now I am asking for help again, openly and without expectation. When I was pregnant with Liam, I hadn't a clue about what being a parent would entail. I had a 26 hour labor and birth at home and I thought that was by far the hardest thing I'd ever do. When we were waiting for an appointment with a pediatric neurologist when Liam was 14 months old, I thought that was the hardest thing I'd have to do. When my midwife (and friend) told me that there was so much to learn from this, I didn't know that this was really true. I didn't know and I didn't see how. I didn't know that I'd cry so hard the day I had to learn how to tie Liam's Snappie down in our van. I didn't know that I'd spend so much time fighting our insurance. I didn't know Liam would spend nearly a week in the Pediatric ICU when he was three and two weeks when he was six. But, really and most of all, I didn't know that there were so many good things still to come. I didn't know how much Liam would teach me.
I am doing what so many parents do all the time. Yes, different circumstances – ones I never imagined would be mine – but in the end, I love Liam and I am doing my best to advocate for him – in school, in hospitals, with insurance, in his environment. This is what parents should do, when they are able, however they are able. I think that's the best we can do, really.
We are very fortunate to have had a special needs trust established for Liam shortly after his diagnosis. This trust has provided so many essential things: Liam's SnapDragon; various respiratory and durable medical equipment; two scary stays in the PICU in Portland; occupational and physical therapy ... As you might well imagine, these things add up, quickly, relentlessly. And so our funding goal this time is a large amount, to go toward one smaller project and one bigger one that go hand in hand. I recognize that this is a lot to ask for – and I'm not even fully comfortable with that. But here's the thing: over the years, I've contributed smaller amounts ($20-50, for example) to many different fundraising campaigns. I don't have enough to fund something on my own, but I have enough to help just a bit and so I do. Together, a whole lot of smaller contributions add up fast. Together, we can make a difference in people's lives and changes can happen.
THE LITTLE PROJECT: My husband has started building Liam a clubhouse (for his Mischief Making Masterminds Club, of course) in our backyard. It's a fairly big space – 8' x 10' – because it needed to have enough space for Liam to be in with his friends. Although Liam has lots of friends from school, there are very few homes he can go to for play dates. He relies on adults (and peers) for so much physical assistance so we want to create a super awesome space for him in our backyard where he can have friends over and have a little independence. We hope to have it done this summer because, after all, nine is a perfect age for a clubhouse.
THE BIG PROJECT: We would like to install a residential elevator in our home. Right now, there is a permanent ramp that runs alongside our house to the front door. This works out for coming in and out, well, the front door. All our bedrooms are on the main level of our house, but the basement is where Ben's tools and projects live – and, as a little boy, Liam would surely like to be down there. (The garage has been taken over by me, as my studio for Satsuma Press.) Liam is unable to get to the basement as he is just too big now to safely carry up and down the steep basement stairs. In addition, to go to the backyard (where the clubhouse will be and where the hot tub is that he received from Make A Wish Foundation), he has to go out the front door and around the house. With a residential elevator, we could have two stops that would allow him to get from the main floor directly to the backyard and then another to go to the basement. As you can imagine, a residential elevator is neither a small nor an inexpensive project, around $45,000 to complete.
The fundraising is set to end on August 3, 2013. We will be leaving for Utah a few days after that for Liam to participate in the second phase of a new clinical trial for Spinal Muscular Atrophy. We will be away for 2+ weeks so please note now that it may take me some time to send out perk rewards once we return.
I have been astonished, again and again, by the kind of community that exists online, linking people together from points all over the world. When I think of this, I am hopeful that the word will spread and that people will be moved to help. That said, please forward this, post about it on your own blog, tweet about if you like. Please know that we will be delighted if you are able to help, whether that is financially or by keeping the momentum going. We have no idea what sort of outcome can be expected, but I am full of optimism. Every bit, small or large, will help.
In advance – thank you, thank you.