My child’s disabilities made her first day of school anything but typical

A few days before kindergarten was set to begin for my daughter, JJ, I gathered up all the school supplies I needed to deliver during Back to School Night. I looked down at the list I created earlier in the summer and mentally ticked off the items: Clorox wipes, Crayola markers, pencil case. Then I looked at the stack of neatly folded papers sitting on top of the supplies, and my stomach lurched. No other parent in JJ’s grade would be checking anything like this off their list.

The folded papers were letters I created to introduce my daughter to the other families in her mainstream classroom. She will spend a good amount of time in her special education classroom, receiving specialized attention and support. However, several times each day, she will be integrated into a class of her typically developing peers. I knew that the minute she rolled into the room in her wheelchair, with her speech device clamped onto a mount in front of her, that her classmates would see how different she was from them. This is why I had gotten permission from the school to send a letter home with each child. I desperately wanted to get ahead of their whispered questions and curious stares.

The letter explained all about JJ’s rare syndrome and her equipment but also described how smart, funny and alert she is. There are still many ways in which JJ resembles her peers, so I also attached a little card explaining my daughter’s personality and interests. It included fun facts—her adaptive, motorized car—and a list of her likes—Kidz Bop, Matilda, and princesses.

As I stared at the stack of letters and cards, I realized why they made me feel so strange: They signaled not only JJ’s differences, but my own. If my daughter is not a typical kindergartner, then I am not a typical kindergarten mother. There are so many experiences, hopes, fears and dreams I will never share with the parents of my daughter’s classmates.

Instead of the usual rites of passage, my family has had other milestones we celebrated on our journey to marking JJ’s first day of kindergarten. For example, on the night before she took the first dose of a special new medication—the very first approved to treat her syndrome.The four of us dressed up, ate cupcakes and had a party. More unusual milestones followed, like the times when the medicine helped our daughter say a few words again or to sit up on her own for the first time in years.

Families like mine have our own moments of private joy. During these, we don’t commemorate the passage of time or the brightness of the future like others do. We try not to focus on whether or not that particular milestone will ever be repeated or what it could mean for the future. Instead, we celebrate the amount of work, bravery and perseverance it took us all to get there.

Three days after Back to School Night, I wheeled her onto the bus for her first day of kindergarten. She looked excited as I gave her one last wave and watched the para secure her wheelchair to the floor of the vehicle. As the bus drove away, I thought about all the obstacles and complications that my family had overcome in order to reach this moment. We navigated multiple diagnoses, an emergency brain surgery, the loss and return of JJ’s sight, the installation of a feeding tube and months of uncontrolled seizures.

That same morning the school organized a “Coffee and Kleenex” event for all the kindergarten parents. As soon as I read the title of the event, I knew I wouldn’t attend it. Not because I didn’t appreciate the sentiment, I just knew I wouldn’t fit in. No part of me would grieve my daughter’s first day of school. I have been waiting a long time for the relief and help it would provide. School gives JJ so many things that my husband and I cannot: constant stimulation, a sense of independence, opportunities for daily therapies, and socialization with a host of other children. We might have needed tissues at many other times, but we certainly didn’t need any now.

As the bus rounded the corner and disappeared out of sight, I imagined JJ sitting in her wheelchair, eager to begin the next chapter of her life. Then I turned back toward my now quiet house. Once I crossed the threshold, I smiled and released a sigh of relief. I felt ready to begin my next chapter too.