I’m Sad She Won’t Have a First Day of School, but These Words Helped Me


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.

Maria Kefalas the mighty.1-001

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Other

The Adorable Moment Justin Bieber Surprised This Boy With Down Syndrome

This is the sweetest Justin Bieber news we’ve heard in a while. As part of an episode of the reality TV show “Knock Knock Live,” where unsuspecting people across the country get visits from celebrities, Bieber showed up at a church in Lynwood, California, to pay a surprise visit to Nikea, a rapper, and his son Noah, who has [...]

What ‘Treat and Street’ Means for My Daughter Who Has Bipolar

When my daughter was officially diagnosed with bipolar disorder, I knew the chances she’d be hospitalized were high. What I didn’t know was that she would be hospitalized five times by the age of 9. I believe at least three of these hospitalizations could have been prevented had she been given the care that she [...]

How Her Brother’s Seizure Inspired Her Award-Winning Sculpture

When Tess Dumon was 12 years old, her brother Louis had a seizure she’ll never forget. Louis has autism and epilepsy, so Dumon was accustomed to watching everything from barely noticeable seizures to ones where Louis fell to the ground, Dumon told The Mighty. That day was different though. Louis, then 14, slipped into a coma lasting several [...]

Why This Dad Is Turning His Son With Down Syndrome Into a Social Media Star

Meet the little boy who’s helping to dispel stereotypes all around the world. Photo from the My Son Jack Facebook page Jack Clayton, a 20-month-old toddler with Down syndrome, is currently winning over the Internet with his adorable smile and charming antics. He’s become popular thanks to his Twitter and Facebook pages, which currently have [...]