Taking Care of Ella Is a Full-time Job

Taking care of Ella is a full-time job. She needs help getting food and water, going to the bathroom, and moving around into various sitting positions. She needs help playing with toys, swinging on the swing, and going in and out of the house. She needs help bathing and getting dressed, combing her hair, and brushing her teeth. A full day with Ella can be an exhausting endeavor.

Four years ago, Ella’s mom, Lindsay, went into surgery for her right foot. It was to be a simple bunionectomy, with some other work the podiatrist said needed to be done. Things didn’t go very well after surgery, though. The result was that Lindsay went to see an orthopedic doctor for a second opinion, and he fixed what apparently had gone wrong earlier. Somewhere along the line, Lindsay developed a foot infection.

She has been battling this infection since then. The incisions would close, then open up again. Lindsay ended up having six more surgeries on her foot to correct everything that was going wrong. The last surgery, a few months back, proved to be the worst; the results of a recent MRI showed that one of the foot bones has become infected. She has been seeing wound care and infectious disease doctors. They are doing everything they can to save her foot.

Lindsay’s foot has been non-weight-bearing on and off for the past four years. She got around on a knee scooter for a while, and then switched to a brace with a peg leg attached to it. She has undergone much treatment. In the meantime, since Lindsay’s doctors have ordered her to not lift Ella, I have been our daughter’s sole caregiver.

We now have a morning routine that allows me to get Ella ready for school while leaving enough time for me to get to work. When I arrive home, I have to take her to the bathroom right away, since Lindsay is not allowed to lift her. Then my afternoon begins.

I have to get her formula and meds ready for the next day. I have to help her with her homework, get her an after-school snack, and push her on the swing. Of course, I have to take her to the bathroom several times in an afternoon (we think she has a small bladder) and help around the house with cleaning, laundry, and meals. I also have to get Ella to her therapies on therapy days, not to mention taking care of Ella’s two siblings.

Both Lindsay and I are tired. Lindsay spends a lot of her energy battling this infection while working from home and doing what she can for the house and kids. I work a full-time job and then come home to another full-time job. Ella does her part by doing things by herself as much as possible, and her siblings pitch in here and there.

The only way we are surviving these days is by supporting each other through this tough time. It takes “five servings of strength” to live a day in our lives.

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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.