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 of parenthood. The images of ballet slippers and soccer balls shatter, replaced by wheelchairs, medical equipment… and the short bus. At first, the thought of those unexpected accessories is scary — down right knee-shaking. 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.
Though they seemed devastating at first, as the reality of what you are really 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 an instrumental part of 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 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 given the gift of time, your special child begins to rebuild expectations for themselves and their future. And, soon they reconstruct notions you may have once had.
This week, my amazing daughter, Gwendolyn, did that once again for me.
Diagnosed with spinal muscular atrophy type 1 at 5-months-old and given a year to live, at 7-years-old, she is now profoundly disabled. She cannot speak, is completely immobile, save for the blinks of her eyes and the taps of one finger, 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 RNs, 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 for 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 very 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 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 very patiently then squealed with anticipatory glee watching the bus drive up. Without any hesitation, she eagerly went with the bus driver as he loaded her on the wheelchair lift and strapped her chair down once in. She greeted the other passengers and had a look around. And then set her eyes, wide with thrill, on the window and 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 the bus on arrival… to see her beaming. Proud. Blissful. And 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.