While Lindsay was gone, Ella had to rely solely on me for her needs. And she will have to do so for several months going forward as Lindsay learns how to care for herself. Ella widely used texting as a way to contact me wherever I was in the house or yard. Every so often, she would text me an emoji face with a tear on it and the words, “I just miss mommy.” Every time she did this, we sat down to talk about why Mommy was gone and what it might be like when she returns.
Our house now has six wheelchairs (four are Ella’s and two are Lindsay’s), two walkers (Lindsay’s), one knee scooter (Lindsay’s), two pairs of crutches (Henry’s and Lindsay’s), a KidWalk (Ella’s), a Stander (Ella’s), a cane, and an iWalk2.0 (Lindsay’s). Needless to say, the house is full of equipment. We are all just learning how to navigate the hallways and doorways for those who walk and those who don’t.
While Lindsay was gone, Ella colored a lot. A group of people put together care packages for the kids, which included inspirational coloring pages. They were intricately designed (primarily for adults), and Ella would spend time working on them with great care. Before long, the kitchen table was filled with inspirational pages, some half-finished and some completely done.
Ella is identifying with Lindsay because they’re both in a wheelchair. She also tells Lindsay that she will help her with physical and occupational therapy by being her “counter” for her repetitive exercises. Soon they’ll be playing table games together like they used to.
Having her mother gone for a week felt like an eternity for Ella. She missed her mother, asked about her, colored for her, and thought of her often. For an 8-year-old, Ella showed such maturity.
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.
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