I left work early today so I could meet the bus. I wait on our front porch, watching other parents walk their kids home from the school around the corner.
“Hi EH-DREEEEE-ANNNN!!” A horn honks as a girl waves to her friend.
I hear some parental motivation. “C’mon!” “Let’s go!” “We’ll be late.”
Watching my son’s bus pull up on the other side of the street, I see his tiny head through the window and rush to the other side. The driver says hello, then starts working on getting my son out. She opens the lift and positions him squarely in the middle of the ramp.
“Watch your toes!” she warns. I always forget that part.
He is lowered down slowly, still sleepy from his nap. A 35-minute bus ride makes it easy for him to nod off. I check the street. Once, twice, okay, let’s cross. My son has been riding this bus for kids with special needs, designed to safely transport kids who use wheelchairs, for about eight months. Back in the ’90s, we called this something else: the short bus.
Meeting him as he gets off the bus brings forth plenty of complicated feelings, especially with a crowd of parents marching their kids home. On one hand, I impulsively think of things I’m not supposed to think as a mother of a boy with special needs. If my son could walk, I would never rush him. Must be nice to actually WALK home from school, jerks!
On the other hand, I am totally, 100% ravenously in love with this bus because I get to stand before the thing he conquered and destroyed only eight short months ago. We climbed our mountain, but that mountain manages to rear its head twice a day. And sometimes that mountain is even on time.
For about two years, I spent every waking moment with my son. He had a cardiac arrest at the age of 2 1/2 caused by lung failure due to a cold. A combination of weak bones and a small ribcage prompted a few of his doctors to worry.
I was 39-weeks pregnant with my daughter when one particular doctor gave us news no parent should ever have to hear: Your son is dying.
When I asked the dreaded question of “how long,” I immediately knew I should have sat in silence. She glanced at my 39-week pregnant stomach and pondered out loud whether or not he would even meet his little sister. The best-case scenario, according to her, would be that he would live until the age of 5.
I tried to capture and pause and remember every moment from that point forward. What is his absolute favorite TV show? Movie? T-shirt? Fork? Must remember everything. Must take a photo of every single time he laughs. Must not raise my voice. Must let everything slide.
I had my baby girl, we celebrated his 3rd birthday, and we tried to take him out as much as possible. The problem was, he couldn’t fight off a respiratory virus like a regular kid. Each visit to the ER ended with an admission to the ICU and quite often a lengthy hospital stay. We decided to keep him away from other kids.
At that point, the thought of him going to school rarely crossed my mind. And if it did, I quickly swept that idea away, shushing it along with a lengthy list of barriers. He was using supplemental oxygen 24 hours a day. He had extreme anxiety when it came to strangers being near him, namely therapists, doctors, and other children. He had nearly no preschool experience and couldn’t walk. Oh yeah, and then there was the whole life expectancy thing.
But then, very slowly, things started happening. After a month-long ICU stay in August 2014, we noticed his breathing had improved ever so slightly. My husband accidentally turned the oxygen off one night. Instead of rushing to turn it back on, we waited five minutes, our eyes transfixed by the numbers on his oximeter. They didn’t go down. No alarms went off. His color was fine. He seemed okay.
We experimented with turning the oxygen off for longer periods of time — six, seven, then eight minutes. I gathered enough courage to ask the doctor whether she thought he might be improving. She said it was possible but unlikely.
I pushed for more tests. After an overnight sleep study at the hospital, doctors were able to verify something we had known for weeks: Our son was improving.
And then all of a sudden, I could see it. I could see that future I hid so practically, the one I thought I had to erase. I could see his artwork on the walls, the report cards, the parent-teacher meetings. I imagined cupcakes on his birthday and Valentine’s Day parties. Instead of hearing a doctor’s dreaded words, stuck on repeat for months, I heard something else: He might be well enough to go to school.
A few months later, we were officially given the go-ahead to wean him off oxygen. Our goals for him needed to be realistic, but as a result, his time off oxygen moved at an annoyingly slow pace. Thirty minutes one week, followed by 60 minutes the next, and so on.
After graduating to nine hours free of oxygen per day, we started to think about next steps. I put his name in the running for a school that offered a special education, integrated therapy program. The integrated therapy was key. It meant we wouldn’t have to schedule a million appointments each week outside of school. It meant I could go back to work. It meant he would meet other kids like him. It meant that, in addition to learning his ABCs, he would be in a safe environment with professionals who truly understood his needs.
Now when the bus comes each day, I am reminded of how quickly things can change. Our paths aren’t linear, and they aren’t always predictable even when the experts are making those predictions. I was never supposed to be here watching my son in his tiny wheelchair being lowered down to the ground, sleepy from a full day of school.
When the back-to-school commercials make an appearance, when the chaos of packing lunches and the battle of enforcing an earlier bedtime begins, like most moms, I might feel a bit stressed. But I also might have an annoying, goofy grin on my face while standing in that chaos.
I’ll never forget that this chaos almost didn’t happen.