ARCHIVED POST FROM A YEAR OR MORE AGO THAT I NEVER PUBLISHED…
Every single time I pull into a large hospital parking garage, or packed lot, I am so thankful for my parking decal. If there’s another spot nearby that I know my daughter and I can manage easily, I try to grab that one and leave the closer spots for others who might need it more. Today, however, was one of the days that I needed it most and I can’t tell you the relief it was to walk out of the children’s hospital, wheelchair in one hand, almost 4-foot tall wee one in my other arm (not in her chair- don’t ask) and my heavy purse hanging from my shoulder. After maneuvering the elevators, dropping an earring in a packed elevator and getting stuck in a squat position while holding Abi over my shoulder (thank you nice man who awkwardly tried to lift me up by my biceps), I made it to the 7th floor, checked us into our appointment, and finally sat down.
The fact is, Abi does not like being in her wheelchair in new places. She is nonverbal and her unspoken anxiety turns into an involuntary muscular response and she begins to shake violently and groan with pain as her already very tight muscles begin to cramp fiercely. It’s an issue we can often work through if we are out for leisure, but a busy hospital office visit- not so much. It’s get in, get out, and I end up holding Abi most of the time. I am relieved every time I can still throw her over my shoulder and feel those tight muscles relax into mine.
So alas, there I was, with my very tall daughter in one arm, signing in with the other, all while keeping my rolling cart (wheelchair, purse, and backpack) all in front of me. To put it mildly, my arm strength was waning. She is becoming a beautiful big kid, not a baby, and my endurance has yet to catch up. By the end of the appointment I was close to putting Abi back in her chair, (despite her painful shakes) simply because my muscles couldn’t do it any longer. We had been up and down 7 stories, in and out of a packed ENT waiting room, in and out of the hospital lobby and my arm was giving out… and then I saw it. My van. My glorious van of freedom parked three spaces away, just past the garage elevators. I practically ran to it. I flung open the door and sat Abi in her seat, let out a big sigh, and laughed with pure joy as my trembling arm became still again, “We made it!!!”
I got home and felt like I had just run a marathon. Abi and I were in our pajamas by 3pm. I saw the school bus pass our house and I felt like I had won the day. Three appointments and home in pjs by the time kids were hearing the dismissal bell. SUCCESS. After a long break on the couch, I began tube feeding Abi and feasting my eyes on HGTV when a brilliant wave of inspiration, which I can only credit to heavenly intervention, swept over me and I decided to dust off my tennis shoes (literally, there was dust on them from the last time I wore them in 2012) and put a never-been-used-before workout DVD in the player.
I started on Level 1 and truthfully, it was hard as hell. I slapped my legs every time my arms came down during jumping jacks to make a fun sound and I laughed as Abi lay on the ground by my feet staring at me with wonderment. It was exciting. She knew what I was doing. As I squatted, crunched, lunged, and punched, Abi was right there kicking away dancing to her own tune. We were in it together.
I pictured myself looking good in a bikini (sue me) and it got me through the burning. But most importantly, in my heart, I knew I was starting a journey towards the future. A future where a trembling arm and shaky legs aren’t relying on a stranger to help me rise from the elevator floor. And if you’re wondering what that moment was like, it was actually kind of funny. Once I stood up, I said, “WOW. That was rough guys. Guess I need to start working out these thighs, huh?” The packed elevator didn’t say a word but I laughed out loud. Because I was hilarious.
All this to say, I can’t imagine a world (that was in our not so distant past) where parking decals, wheelchair ramps, and general handicap accessibilities weren’t the norm. To someone not personally connected to an individual with disabilities, these advantages may simply seem like an easier way to get in and out of a building. But for many of us, they are not only giant steps in quality of life but avenues to FREEDOM.
I have a friend whose daughter has very similar needs as mine. She recently came to my house and told me about their experience at a local restaurant she had just visited. “Beware of going there. Their wheelchair ramp is in the very back of the building through the loading dock. An employee had to open it up for us. It was an issue.” This boggled our minds as it is, thankfully, such a rare conundrum these days. Larger bathroom stalls, wheelchair accessible hotel rooms, handicap parking, related services and individualized education plans, these are only some of the massive advantages for which others fought before us. We are still fighting the fight but, wow, what massive progress we’ve made in just a few decades. And now, because of that progress, my entire family finds freedom. Thank you warriors of the past. You have helped make my world much more accessible to my daughter, and thus our entire family, and for that I am grateful.
**SIDENOTE: I wrote this quite a while ago. Thankfully, Abi is doing much better with the sensory issues in new places… We still very often carry her into new places (I’m carrying her into school for example right now… and then putting her in her chair…) but more on that later. 🙂 It’s much better and for that I am thankful…