When a Woman I Initially Judged Ended Up Saving My Daughter
Navigating the world of special needs has been lonely, rewarding, incredibly awkward and surprising. My daughter has an unspecified leukodystrophy, meaning she has a specific disease category, but they don’t know which gene is affected. She doesn’t walk or talk and has daily seizures. I started out in a Rett syndrome support group because my daughter fit a bunch of the condition’s symptoms, and even after she was almost surely under the umbrella of leukodystrophy, I stayed in the group because the Rett moms really know their stuff. They know more about seizure meds than I ever will.
We kind of dabble everywhere. We’ve been to an autism clinic even though she doesn’t have autism because they also treat developmental disorders, and I like their attention to usable forms of B vitamins. We’ve done Therasuit, developed by a parent of a child with cerebral palsy and modeled after a suit made by NASA for returning astronauts. We do therapeutic horseback riding and have regular visits to the chiropractor. There are specialist appointments, therapy, seizure meds, and I now know how to keep everything sterile while aiming a catheter through a tangle of kicking legs and arms that think we’re just playing around.
For a while we went to an interesting chiropractor and acupuncturist. I started out going just for me and thought it might be good for my daughter, Maddy, to try acupuncture. The man had so many certifications on his wall from reputable places, but there was just something a little off the beaten path about him. He even forgot about one of our appointments, and we stood outside wondering if he was inside and fell asleep or something. His office was in a tiny creaking house surrounded by bending old trees and a cracked sidewalk breaking into pieces around large tree roots. The air always smelled like damp soil when I walked up to the house. It took a while to get down the path with Maddy’s stroller. This place was not at all accessible for people with disabilities.
The inside of the house-office was falling apart, with the tiniest cluttered kitchen and three small rooms with tables for acupuncture or a chiropractic adjustment. There was a larger open waiting area slash yoga room slash exercise area with a couch and an exercise bike. Everything was a mess. There were piles of books, random plants hanging everywhere and pictures of what looked like famous teachers and religious deities, their frames falling apart.
Dr. T was just as messy as the house. His brain was constantly going and he talked a lot. He had the look of a professional hippy. He’d be wearing a cool shirt and there would be a hole in the arm or pants that looked expensive but had a torn pocket or something that made them just a little less than perfectly presentable. He didn’t care about appearances, so I’m sure it didn’t matter to him, and it made me like him more. He had a nice (and seemingly younger) girlfriend who taught yoga in the house-office. I saw her as a spacey kind of girl who does things like dance naked and have a name like “Sunbeam” (she was never naked at the house-office). They were planning to get married in the near future. I don’t remember her real name.
I never completely bought into everything Dr. T was selling, and he wanted to convince me I could feel better overall if I could trust in what we were trying to do. He was one of those health doctors that I mostly love. But I just can’t bring myself to go all-in on most things, so I kept a safe distance between myself and the peaceful abyss of holistic healing. I kept an even safer distance for my daughter. I was extra conservative whenever he wanted to try something, and I never left her side. I’m overly protective of my kids, and I don’t feel guilty about it. But he was great with Maddy. She liked him and would babble away when we saw him. She’d sit there in her little stroller and with acupuncture needles sticking out of her head, giggling and loudly babbling while he talked to her.
I’ve always been amazed by people who naturally get special needs kids. I think this is because I’m still awkward and don’t know what to say half the time. I have a special needs kid of my own and still feel like I sound like a weirdo when I talk to other special needs kids. Sometimes I’m good, and sometimes I’m awkward. Dr. T really got her. He was amazed by Maddy and her beautiful soul. That’s something I could agree with.
When Maddy was 4, we ordered a special stroller that could support her and still fold up to put in the trunk. There were months of insurance denials, and in the meantime, the medical equipment company loaned us a larger version of the stroller so we could get around. We had the too-big loaner stroller one day and were going up the broken walkway a little early for our appointment. Dr. T wasn’t there yet, and the door was locked, so we had some time to wait outside under the trees. I rolled the stroller backward over the stoop, and when I did, the stroller started to close. One of the straps had gotten stuck between two metal pieces when I opened the stroller, so it hadn’t locked into place. Now it was closing with Maddy in it. Her bum slid down into the space that was widening between the seat and the back of the chair. I pulled on the seat to try to open it, but that just pushed it against her legs and back. Within seconds she had folded completely in half.
I couldn’t open the stroller, but I couldn’t let go or she would slide further down. I could no longer see her face. I thought of a Rett mom who had just mentioned this happening to a chair in the tub and, while she was mortified, others were talking about how funny it sounded. Now I understood her feeling of absolute helplessness. I was alone in the yard outside a locked house away from the street and could no longer see Maddy. Her face was pressed against her legs and the stroller could not open or close. I thought about tipping the stroller sideways so I could lay it on the ground and help her, but it was too bulky. I had no idea if she could even breathe. Everything was so quiet, and I was in a panic. I heard myself yell “Help!” to no one.
And then I heard Maddy giggle. That told me she was alive, but she was still stuck. At the same time, Sunbeam came out of the house. She heard me yell for help and came outside (barefoot, of course) and immediately helped me free Maddy from the stroller. I’ve never been so relieved to see someone. I gave her a big hug and fully loved her from then on.
That was my reminder that strangers who I initially judged could be the exact people who help me without hesitation during my most desperate moments. She saved Maddy and me.
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