Back-to-school season is nearing. Supermarket aisles are filled with lunch boxes, and the department store flyers advertise backpacks and shoe sales. The world assumes if your children are school-aged, they will need new sneakers for running and playing and backpacks for carrying books and lunches. The thing is, when you child is paralyzed, you don’t have to buy sneakers. And if your child eats with a feeding tube, you have no need for lunch boxes.
Our youngest child, Cal, would have enrolled in kindergarten this fall, but at the age of two, she was diagnosed with late infantile onset metachromatic leukodystrophy, a degenerative neurological disorder that has robbed her of the ability to walk, talk, swallow, feed herself and see. Cal is not expected to live beyond the age of 6.
On the first day of school this fall, she will be at home in our den where she is cared for by hospice nurses and my husband and me.
In my head, I can conjure up the first day of school that will never be.
There would be a sign at the school’s main entrance for kindergarten check-in. One by one, anxious parents would bring the children into the massive building. Aides and the other staff would introduce themselves and make sure none of the children were lost or scared. Some of the parents might linger in playground and marvel at the beautiful building with its open landscaping and the massive mosaic of an owl, inspiring children to learn and soar in the pursuit of knowledge.
Children would wear outfits specially chosen for this important day. There would be girls wearing perfectly woven braids and long, coltish legs. The boys would wear shorts and the bright-colored socks and sneakers that all the athletes wear right now.
Cal would be wearing leggings or maybe shorts and sneakers, since she was never a frilly, dressy girl. I know she would want to run after her older brother who is one of the big kids in sixth grade. Cal’s curly hair would be wild and uncombed since before she got sick, she would never sit still long enough for me to brush her hair.
How clear this vision of a thing that will never be is. How well I recalled just assuming all these things would happen when I became a mother for the third time.
When the official letter from the district arrived in the mail wanting to know if my daughter would be enrolling in kindergarten, I didn’t know if I should just ignore it or call the district to explain why our daughter wasn’t going to school. I explained how we would only require home-based services. The woman was kind and thorough, though, she too was at a loss for words. She couldn’t help but ask, “Are you sure Cal is too sick to go to school?” I explained the risk of respiratory infection was too great and Cal’s world had to be our home and her nurses.
It makes me sad Cal can’t go to school and learn.
The paradox in all of this is that this child who isn’t going to school has taught our family and our community so very much. Cal has given my older children and our entire community a powerful lesson in how to live with a terminal illness. Even as the disease takes more and more from Cal every day, Cal smiles when the children speak to her and sings along during the spring concert. Cal never complains or gets angry. If she is in pain, she cries out, but she’s incapable of anger, cruelty or mean-spiritedness.
Cal’s illness requires many people to work very hard to take care of her. But the truth of the matter is that Cal gives everyone much more than she asks of us. The children at the school have written a book about Cal and neurological diseases. Teachers and students at the school — where Cal will never be a student — have raised $37,000 to support children’s hospice programs and research in pediatric neurology.
One day, when I told the guidance counselor at the school how much it hurt that Cal would never get to go to school there, she corrected me. “Cal is very much a part of our school,” she said. How could I have not realized this before? Cal had touched the lives of so many children, and they would never forget her. She had been a part of the school all along.
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