The Short Bus Isn’t a Punchline. It’s My Beacon of Hope.
The short bus — a punchline in jokes. A source of disappointment. Or fear.
But the short bus is a gift.
When your child is diagnosed with a disability, a million images flash through your mind as you try to make sense of it all and reset your expectations for parenthood. The images of ballet slippers and soccer balls shatter and are replaced with wheelchairs, medical equipment… and the short bus. At first, the thought of those unexpected accessories is scary. But then the images turn into real life, and you grow accustomed to seeing equipment strewn throughout your house the same way you expected to see balls and toys. And it becomes normal.
As the reality of what you are facing takes shape, those previous expectations for your child become trivial. The diagnosis fears go from, “Will my child still play sports?” to “Will she survive?” It is that last crucial perspective that changes the landscape forever.
When your child’s disabilities also include a life-limiting diagnosis, suddenly the things that seemed instrumental to parenting no longer even register on the chart. Life slows down, milestones are completely altered and the simple is savored. There is beauty in that. And joy. And a bareboned realness that keeps all the unimportant stuff in check. Because at the end of each day, when your child is still alive, that alone makes it a very, very good day.
If you are lucky and have the gift of time, your special child begins to rebuild expectations for themselves and their future. Sometimes they reconstruct old expectations you may have once had.
This week, my amazing daughter, Gwendolyn, did that once again for me.
Gwendolyn was diagnosed with spinal muscular atrophy type 1 at 5 months old and given a year to live. At 7 years old, she is profoundly disabled. She cannot speak, is completely immobile other than the blinks of her eyes and the taps of one finger and is dependent on machines or the help of others to do everything for her. But she is determined to be just one of the kids.
Gwendolyn is in the second grade in the mainstream setting. With the support of two nurses, a speech therapist and an inclusion specialist, Gwendolyn is fully integrated into the school system. She participates in all activities, gives speeches to accompany her research reports, plays PE alongside her classmates, takes after-school hip hop and attends every field trip. Instead of taking the school bus to those field trips, however, she is loaded into our family’s accessible minivan and driven by mom or dad.
I don’t know why it didn’t register with my husband or me before. Everything about Gwendolyn is socially driven. She expressed interest in buses and we noticed, but the reality is we are so focused on saving her life each day that riding the school bus seemed an unnecessary risk. Until she clearly advocated for herself that riding a school bus mattered to her. A lot. And of course it does. When I stop and put myself into my childhood shoes, a school bus is an adventure. Excitement. Something special. And if all the other kids get to have this fun adventure, why shouldn’t she?
This week, after much preparation and organizing from her school team, Gwendolyn rode the school bus. It was indeed a short bus, and she thought it was totally awesome. She waited patiently for the bus to arrive and squealed with anticipatory glee watching it drive up. Without any hesitation, she eagerly went with the bus driver as he loaded her onto the wheelchair lift and strapped her chair down once she was inside. She greeted the other passengers and had a look around. Then she set her eyes, wide with thrill, on the window and waited for the sights to come. As the bus departed and throughout the short ride, she cheered, “Yippee,” “Yahoo” and “Wee!”
I followed behind her in our minivan, nervously rushing to meet the bus on arrival… to see her beaming. Proud. Blissful. On top of the world.
When your child was not expected to be alive, watching her on the short bus, filled with pride and glory, well, that bus becomes a beacon. For what was not expected. For what may still be. Yes, the short bus is a gift.
This post originally appeared on The Gwendolyn Strong Foundation.
Editor’s note: Gwendolyn Strong passed away on July 25, 2015, at age 7. Please send the Strong family your condolences.