One thing that is super cool about having a blog with a large readership is that I can use this space as a platform for other writers as well.
I’d like to introduce Ana, a 21-year-old Montanian, Montanatonian? Montaninite. She’s from Montana. She is also the mommy to a beautiful almost-2-year-old, Zoe. After Zoe was born, it was discovered that she had a condition called Arthrogryposis. Anthrogyposis affects the joints and muscles in all four limbs, typically. They are very stiff, with seemingly no range of motion. There is also substantial muscle weakness. Zoe was born in the lotus position, legs criss-crossed under her bum, feet clubbed, her elbows would not bend and her hands bent forward to touch her forearms.
The more I have gotten to know Ana, the more I am inspired. As a young, single mom to a child with special needs, Ana is faced with struggles that seem impossible to handle. She stays home with her daughter full time, taking her to several physical and occupational therapy appointments a week. Zoe also needs her arms and legs cast periodically to help bend and and straighten the joints. Through all of this, Ana maintains a positive, no-nonsense attitude that I strive to have myself. When asked how she does it, she responds, “If it were your child, you would do it all too. You just do what you have to do, and keep moving forward.”
Ana is also a writer. Her work has been in several online publications, including Mamalode. And, after persistent prodding, she has started her own blog, What Happened to Your Baby?
I encourage you to read Zoe’s birth story, as it is raw, real, and simply beautiful.
Today, she is sharing a piece with This Woman’s Work readers on Zoe and her new found independence with a wheelchair at one of her weekly appointments.
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I’ve been in Zombie Mode for the last two hours, unable to articulate more than a grunt or a groan. I’ve been speaking to my roommate in shrugs and blank stares. Which is fine, I guess. Better than the hide-in-the-bathroom-and-cry-intermittently tactic that I used most of the evening. Without allowing myself to be too vulnerable, and as to not confuse anybody with the mess that is in my head right now, tomorrow is a big day for appointments with Zoe. I can’t wrap my head around anything. Any train of thought gets lost within seconds.
I need redirection for the moment. I can’t write about an appointment that I’m not even clear about. I click “shuffle” on my iTunes, and the first song that starts playing is “Ho Hey” by the Lumineers. This is my daughter’s favorite song. She likes to shout “Oh!” and “Hey!” in between the singer’s. Just this morning she was in her carseat, singing and dancing to it on our way to appointments…
In the last week, Zoe has gone from not necessarily being aware of when we are heading to physical and occupational therapy, to begging to go, and sitting by the door saying “Go? Daar-ed? Cardo?” (How she pronounces our physical therapist and occupational therapist’s names. “Maaama. Go! Fishie! Horse! Bug?? Gooo.” Every time we get in the car, she asks if we are going, and every time we pull up to the hospital her face lights up and she goes through her list of words associated with what’s inside.
What is inside is freedom. Independence. Confidence. A certain, special glow that I couldn’t describe to you with all the words in the world. Three times a week, before we cast her legs, she gets to drive (Drive? Play? Explore?) a power wheelchair around the hospital. We started with smaller spaces, a room where we tried to get her to come to us while she learned how to steer, stop, and pull up to a surface without crashing into it. Now, she drives through the halls of the hospital like a daily stroll.
Lately, we don’t even have to try to get her to follow us. We buckle in to her wheelchair, and she goes. She leads us. We follow at a safe distance, and sometimes jump in her way to be living, moving obstacles. She tells us, “Bowl.” and takes us to the toy bowling alley set up in the hallway near the pediatric gym. Sometimes she detours into the gym and plays with the tool table that she’s never been able to reach.
Next, she takes us to the fish tank in the common area of the Inpatient part of the hospital. Here, she drives up to me, and stops just close enough to raise her arms, wordlessly asking to be taken out of the chair. Today, her OT set up a narrow passage with chairs for her to drive down that she couldn’t just flip a U-ie and drive away from the tank, trying to teach her how to reverse more than a few inches. I waited, crammed between a chair and the fish tank. She reaches me and lifts her arms. I pull her out and she gets to feed the fish spoonfuls of smelly flakes. When I put her back down, we expected her to barrel into the chairs so they’d move out of her way since we haven’t really worked much with reversing yet, but instead, she turned her head so she could see behind her (as much as the chair allows, anyways) and reversed the whole five or so feet until she could turn around and cruise around the nurses station. Sometimes she wants to play on the carousel horse, or look at the Christmas tree in the corner.
We go to the therapy gym for adults with the giant butterflies hanging from the ceiling, sometimes she moseys down less exciting hallways, peeking into rooms we pass and winning over hearts of whoever she drives by. Another first, today, was the elevator. It took some coaxing to get her to understand it was okay for her to drive into it. We went up to the pediatric unit and met two girls at another fish tank, then took another elevator downstairs again.
No matter where we go that day, it always ends the same. She drives over to where I’m sitting and raises her arms to be picked up again. I pull her out, she drinks some milk and then we go cast, and after that, head home for naps, dinner, and playtime. The days she drives, she won‘t let me do anything for her. She doesn‘t want me to carry her, or help her do anything. At those appointments Zoe gets a taste of being a “regular” kid. She gets to run away from Mom, she can reach things she can’t when she is butt-scooting, everything is a bit more attainable. No wonder she won’t stop asking to go.
When we get home, Zoe sets her sights higher. She is more interested in things on the table, wants to check out what is just out of reach, and I know she is plotting what she’ll get into when she can drive her own chair around the house. And…I can’t wait.