The nature of SMA Type 2 makes everyday tasks difficult. Brushing teeth, getting dressed, and even drinking water can pose challenges that require others’ help.
Accepting help is part of my daughter Ella’s daily life, something she’s become accustomed to from the onset of her disease. But what about the tables being turned? What about Ella’s ability to help others? Creativity and opportunity are the key ingredients in finding ways for Ella to help.
We have a 350-square-foot deck off the back of the house, and off the deck is a 20-plus-foot ramp for Ella. When we bought the house, the deck was under snow, so we didn’t know what shape it was in. Come the spring we realized the deck needed work — esthetically at least.
Shortly after we moved in, we had a ramp installed with the help of DSCC, the University of Chicago’s Division of Specialized Services for Children. DSCC describes itself as an organization that “partners with Illinois families and communities to help children and youth with special healthcare needs connect to services and resources.” The builders that DSCC hired matched the color on the deck — and it looked fabulous. The ratty deck and the new ramp looked awkward together, but functionally were perfect.
Some years passed, and the deck color deteriorated: It looked like the previous owners had used a cheap paint on the floorboards and railings. The peeling worsened each summer, and bare wood was showing. The time had come for me to redo the deck – a monumental job.
Not only did I have to re-color the deck, I also had to do the ramp to match. We chose white railings and a gray floor. We decided to do the railings with an exterior paint and the floors with a product called Deck Correct, which is designed for old, tired decks in need of a major uplift. The results were beautiful. You can see the before on the left, and the after on the right.
I asked Ava, who is 10, to help me paint some spindles. Of course, Henry, 8, and Ella, 7, wanted to help as well. It was easy enough for Henry to help, but more of a challenge for Ella. But like her siblings, she wanted to feel part of the family and “help Daddy do the deck.”
I found an area she could paint: the last support pole at the end of her ramp. A place she could reach in her wheelchair and that had a surface large enough for her to paint effectively. I gave her a brush full of paint, and with all her strength, she painted one whole side of that pole — and quite well, I might add. It took her some time, and she leaned to and fro to get the brushing motion going, but in the end she completed her task.
Later that evening, with the taste of helpfulness still lingering, Ella spent a good 15-20 minutes helping Mommy — my wife Lindsay — with physical therapy. Lindsay has sciatic nerve pain due to a fall she took a few months back, and is deep into her physical therapy trying to alleviate the problem.