Ella Loves Summer Play, Even with SMA

Ella loves the outdoors. As summer begins in our area, the warm weather follows, with shorts and short-sleeved shirts the preferred attire. But spinal muscular atrophy (SMA) presents some challenges for Ella as she plays outdoors.

One challenge is getting herself outside. She has two options. In the first, she can go out the back and onto the deck, which has a ramp leading to the backyard. The tricky part is getting out the door.

Another option is to go out the garage door. She’ll first go into the laundry room, which is between the house and garage. Then she’ll ask one of us to open the big garage door. Using a ramp that’s there, she’ll cruise into the driveway.

Ella and her friend from across the street love to play together. Her friend is younger than Ella by a few years, but they have much in common about what they like to play. Primarily, that involves baby dolls, water, and sand.

They always begin playing on her friend’s driveway. A blanket is placed on the driveway to play with the baby dolls. Most of the time, I’ll cross the street to place Ella on the blanket. The girls play with the dolls for about a half-hour. 

As the sun beats down, they’ll quickly grow weary of the dolls and turn their attention to the sprinkler. Her friend’s mom will text me to help Ella back into her chair. Ella then follows me across the street, up the driveway, and into the garage, where she has a ramp leading to the garage door and into the house.

She’ll park in front of the downstairs bathroom, and I’ll lift her onto the changing table. It’s off with her clothes and on with her bathing suit. Then, I’ll cover her chair’s controls and battery with plastic bags to prevent them from getting wet and shorting out.

She’s ready to go, and she’ll find her way back out to our driveway. I’ll bring the sprinkler to the middle of the driveway and turn it on. The girls delight in running through the water, and they’ll spend about a half-hour in the sprinkler cooling off.

By the time they are done, they’ll want to play in the sand. Ella will come into the house and ask me to change her back into her clothes. I’ll oblige, and she’ll go out the back door to the deck, down the ramp, and into the grass about 10 feet from a pile of sand that was left from our old playground set.

I’ll place a blanket on the ground next to the sand, lift Ella out of her chair, and place her on the blanket. The girls ask me to fill a bucket with water so they can wet the sand and build things. They’ll spend another half-hour in the sand.

Then, I’ll gather Ella into my arms and place her back in her wheelchair. We’ll get the sand off her body as much as we can.

Having SMA challenges Ella in many ways. But she’ll find a way around obstacles, from doors to furniture and other things. With a little help from her parents, she can enjoy much of what a child without SMA might enjoy. 

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.