Kate lives in Wisconsin with her fiancé, David; her daughter, Leah; and their cat, Hunter. Leah, 11, was diagnosed with spinal muscular atrophy (SMA) at 14 months.
Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed we were both hopeful and determined that it wouldn’t hold us back.
I like to think we’re a well-oiled machine in our house every morning, but I may be delusional. Every morning is started with the best intentions, which quickly evaporate into controlled chaos, and ends with a sprint through the door, praying we didn’t forget anything.
People will talk about our kids. Little kids will ask them questions. Adults will ask them questions. Some will just point and stare. Cute little kids in wheelchairs are hard to resist. Teaching your child how to handle these interactions with strangers will make these interactions a lot less stressful, and even fun.
It is hard. I cannot lie. It is hard dealing with SMA. It is hard not knowing at all what your child is going through. It is hard “not getting it” over and over again. We are so committed to our kids, but we cannot always help them ourselves.
I often sing to myself the lines, “Take good care of yourself, you belong to me.” The one thing we as caregivers need to make sure we do is take care of ourselves.