Raising a child with a physical disability can be a balancing act of sorts. It requires a balance between focusing attention on the child who needs extra care and the family’s other children. It requires balancing time to fulfill responsibilities other than medical appointments. But the balancing act that took me by surprise was figuring out how much I should help my daughter with daily tasks.
Until her diagnosis, Grace was our most independence-seeking child. She was responsible and conscientious in her academics, a perfectionist in her extracurricular activities, and meticulous in the organization and the cleanliness of her room and belongings. She wanted to be independent, and talked often of getting a job when she was old enough.
When her health began to decline, she started needing physical help in the most basic ways. She needed help getting out of bed in the morning. She needed help stepping in and out of the bathtub. She needed help preparing her own breakfast and doing laundry.
These were things that she enjoyed doing and that gave her a sense of independence. I believe she felt the loss of independence profoundly.
I watched her life grow exponentially harder before my eyes. Every step was laborious. Every brush of her hair was difficult. Of course, my instinct was to step in and make her life easier. At that point in her illness journey, our help is what she needed. But as time went on, and she began treatment and grew stronger, we caught glimpses of her gaining some of that independence back.
Throughout this balancing act of helping, I would find myself doing things for her that prompted her to respond, with an exasperated teenage voice, “Mom, I can do it.” I realized I was making her feel incompetent, and possibly causing her to question her own abilities. I recognized that it was time for me to step back and allow her to stretch the boundaries of what she was able to do independently.
The problem was that I didn’t know how to step back and let her do what she could do. My fear of her falling or experiencing failure because of her illness caused a deep desire to catch her. In reality, this hovering hindered her ability to grab hold of the independence she was able to manage. It wasn’t until I recognized the unhealthy side of my help that we could strike a balance that worked best for her.
Grace will be 16 soon, and she talks of driving and getting a job. She understands her limitations, but also strives for that independence. It is my responsibility to facilitate and guide her into experiences and opportunities that will best suit her personality, skill set, interests, and physical abilities.
I want to be the one to build her up and help her see all the things she can do, not point out all the things that she can’t do. I remain in the background, ready and willing to help, and she knows this. But Grace determines what she needs help with and what she can manage independently.
Note: Lambert-Eaton News 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
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