The house is full of chatter while our kids — Ava, 13, Henry, 11, and Ella, 10 — talk to each other and play video games.
The doorbell rings as one of Henry’s friends arrives. Henry puts his shoes on and is out the door, grateful to have someone to play with. Ava and Ella remain at the kitchen breakfast table talking with each other and with friends via mobile apps.
Henry and his friend return with two more boys. They stay outside on the driveway, talking and goofing around. Ella can hear them outside, so she joins them. In the meantime, Ava is talking with her friends online to plan a get-together. In a few minutes, Ava’s friend from across the street shows up to joins the kids.
Dusk approaches, and the kids decide they want to play hide-and-seek outdoors. They go through the childhood ritual of picking the person who is “it,” and commence their game, but Ella can’t play. Her wheelchair wouldn’t do well on the bumpy grass, and she would have a hard time finding a place to hide. Sitting on an empty driveway, she turns her chair around and heads inside.
Ella tries to call one of her friends online but they are busy. So, she plays on her iPad by herself, without smiling. She can hear the kids outside screaming as they run by the kitchen window. Even the dogs are out playing.
At times like these, Ella has a hard time dealing with spinal muscular atrophy. In many ways, she can’t participate in the pleasures that most children get to experience, although she wants to. She becomes frustrated and angry.
Several months ago, Ella was seeing a therapist, but she stopped when COVID-19 hit. Since then, she has grown even more frustrated with her disease. Recently, however, we got her back in sessions. She is willing to attend each week and is developing a good relationship with her therapist.
We don’t know what she talks about, as we respect her privacy, but she does report that the sessions are good for her. And we’ve noticed an improvement in her levels of frustration and anger toward her disease. We will continue the therapy sessions for Ella as she grows and matures.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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