It’s been a year. An entire year since this post, which told the story of Maya’s hospitalization for pneumonia and the reasoning behind my decision to return to school. I remember telling Jenn that I’d need to cut back on my writing for Defying Disabilities because graduate school was both taking all of my time/brain cells/energy and sapping any desire I had to write for recreational purposes, which is kind of an unintended consequence when you write papers all week. But my intention was to submit a post quarterly, not to stop for good! I’ve missed writing about Maya immensely, but honestly, the thought of trying to capture the last year of Maya’s life in one tiny post feels like an overwhelming task and I’ve put off doing it for fear that I leave too much out, that I’d fail to paint the whole picture for you. So instead of pressuring myself to do it perfectly, I’m going to do what I can, maybe just covering a few of the things that come to mind and leaving the rest for another time. As a recovering perfectionist, this is an opportunity to practice what I preach—capture what you can and know that good enough is most often good enough.
Maya’s stay in the hospital last February was a big event for our family, leaving a mark on all of us, perhaps me most of all. It took Maya a few months to return to baseline and it was difficult to watch her languish for a time, her eyes dark and sunken, tiny ribs visible beneath her pale skin, all development effectively grinding to a halt. I watched her like a hawk, how much she ate, how she was breathing, how often she remembered to use skills she had already mastered. Every refused bite of food was mentally noted and with each cough I worried. But one day, closer to summer, when I wasn’t even looking, Maya was back. And that girl was ready to rock and roll. Little did I know, Maya was ready to make up for some lost time!
Summer arrived, Maya was healthy, life was good. She finished up the school year at her integrated preschool, the same program she’s been attending since she turned three. But with the end of the school year came an entirely new issue to deal with, one that I’d seen coming, but had grossly underestimated in severity. I had nowhere for Maya to be during the day without school in session. This hadn’t been an issue the summer before, since I was home anyway, but this year was different. I had back-to-back classes all summer long, which meant a ton of homework, and I was also set to start the first of two internships for my graduate program. I needed childcare for Maya and I needed it quickly. Now, it’s not as if this all hit me the moment Maya came down the steps of the bus on the final day of school. I’m not that ill-prepared for major transitions. I’d started the ground work a couple of months before, asking around for recommendations and getting a feel for what was out there. But despite the work I’d already put into the search, I’d come up empty-handed. No one wanted to take Maya. The daycares in town all required that the children be potty-trained, which Maya wasn’t. I spoke with the daycare center that Julia attends, hoping we could work something out since I knew that they’d had special needs kids attend in the past, and the director told me she’d ask the teachers and they’d make a decision. She didn’t get back to me for a week and so I tracked her down and asked what her thoughts were. I was told that they couldn’t “meet Maya’s needs at this time.” I tried to keep my head up high as I walked away from that conversation with the director, but I wanted to cry. My sweet, special, magical Maya wasn’t welcome anywhere. I didn’t know what to do. It was time to think way outside the box. Desperate times call for desperate measures, right? So I came home and got on Facebook. I’m part of a local buy/swap/sell group for moms, which I’m sure most towns have these days, and I knew I’d reach a large audience of other mothers who might have some ideas for me. I provided a synopsis of the situation, describing her strengths, as well as some of the ways that caring for her might differ from caring from other four year olds, and included a picture of my smiling girl. I hit post. And I cried. Big, fat, ugly tears. For a long time. I have never felt so disgusted by a situation in my entire life. I felt like I had just placed an ad for a dog. I felt angry and sad and broken and dirty. I could not understand why it was so hard to find childcare for Maya, that I’d had to basically advertise my child in the hopes that someone would take her. “Hey, look at this cute kid. Can someone please watch her? I swear she’s not too broken.” Luckily, we live in an awesome town and very quickly I had a flood of responses. People offered names and numbers and words of encouragement. One woman messaged me and said that despite the upbeat nature of the post, she could tell how painful it was to put out there like that. We wound up speaking on the phone for a while and she gave me the number of the woman that babysits on Friday nights for her kids. It wasn’t the lead I needed, but for her to take the time to reach out to me and offer support was worth far more in the moment. The world is truly full of wonderful, kind people and sometimes it takes painful situations to remind us of that. But the thing that stuck with me the most during this whole thing, the one message that went through my head on repeat, was that no parent should have to beg for childcare for their special needs kid. Ever. This is NOT acceptable. There should be systems in place to avoid this type of undue suffering. I was once again in a position of being reminded just exactly why I’m pursuing the degree that I am, why I feel driven to create a network of families and medical providers in our town, why I do the work that I do. I don’t ever want another parent to feel like I did that day. We can do better than this as a community. So the issue gets added to my growing list of things to tackle once I’m free of the shackles of lectures and homework and group projects. I don’t want this to happen again.
So where did Maya end up over the summer? With Meg, an amazing, albeit ridiculously expensive, college student with a background in special education. When you’re backed into a corner, you do what you can. But really, she was perfect for what we needed. She came to the house each morning and focused solely on Maya for 3-4 hours each day while I hid out upstairs doing homework. Meg was a great short-term solution for the summer and we were grateful for the time we had with her. Her gentle nature and never-ending patience, combined with the ability to push Maya a bit past her comfort zone, proved to be a winning combination for Maya’s development. I’m certain her brain cells were kept appropriately busy over the long break from school.
The summer wasn’t all work and no play for Maya though. She also got to go on a pretty amazing adventure with her father and sisters. I was stuck at home with school obligations, but the rest of the family loaded up the car and went on an epic road trip for three weeks, which included a family reunion in northern California. They camped along the way, played on the beach, explored the redwoods and apparently talked a lot about bears. Maya came home with a new phrase, which was repeated multiple times a day in our house for the next several weeks—“There are no bears.” I guess Daddy had to do a lot of reassuring while the kids were sleeping in the “deep, dark woods” as Julia calls them. Maya also did a lot of local camping trips over the summer and spent as much time as possible on her bike. She finally got the hang of her Strider and it was hard to get her off of it!
By the end of summer, we were ready to get Maya into a new schooling situation, since Meg would be leaving us. Maya would still be at her preschool, but with it only being a half-day program, we needed something for the morning hours. I was still scarred from my search a few months before, but her father wound up finding her the very best situation we could have asked for. One of the things Devon loves doing with the girls in the summer is leaving the house early on Saturday mornings and going to the garage sales. It drives me crazy and I don’t have the patience for it, but they love it. It just so happened that they wound up at a rummage sale at the local Montessori preschool one morning. He spent some time talking with the teacher there and she said to come by to check it out whenever we wanted. When he brought this up, I balked. I went into full-blown Thea-is-as-stubborn-as-a-mule mode. There was no way I’d send Maya there, where she’d be the only special needs kid in the class and she’d stick out like a sore thumb. All the kids would make fun of her and the teacher would lose her patience with her and we’d get a call after a week saying to come pick our child up because it wasn’t turning out to be a good fit after all. It’s amazing how clearly these scenarios can play out in our minds, especially when there’s fear involved. I wasn’t going to let it happen. I wasn’t going to throw my kid into the shark tank. I was going to stop that pain before it even started. No way. But because I am capable of being somewhat rational, even when I’m convinced that I’d rather possibly place my child into an actual shark tank, I went to the school with Devon to check it out. Or possibly to rub his nose in how terrible it was, but I’m going to go with my intentions being much nicer than that. At least, 97% nicer. So I went. And I liked it. The teacher met us there with someone she’d brought over from the college, who had a background in special needs education. The fact that she’d contacted someone to meet with us showed me that she already had a level of dedication to doing what was right for Maya. The school itself is run out of a house in a neighborhood we enjoy and there are just 12 children total in the class. It’s a very soothing environment and the teacher has been running the preschool for 30 years. I still had my reservations, but I was willing to give it a try. I said that we could start Maya there in the mornings, with her bus picking her up and taking her to her other preschool, and see where things went. I am so glad I took a chance on it. This is one of those times that I LOVE being wrong. Love, love, love. Maya has flourished under the guidance of her teacher and her peers. Really, our experience with BambiniMontessori is a post in and of itself, so I’m doing it no justice here, but I will say that watching how she’s been embraced there, seeing the exponential growth in my child, knowing that she enjoys going to school each morning to be with her friends, well, it kind of makes my heart explode in my chest.
I believe that’s all I feel like cramming into one post. It’s been an incredibly long day, with class and presentations, and my bed is calling my name. I have something else that I really want to talk about, but it deserves nothing less than a post of it’s own. This will have to do for now. Earlier, I tucked my four-year-old Maya into bed for the last time. In the morning, she will be five. It’s hard to even wrap my head around. My sweet baby Maya is growing up. I wish she’d slow down just a little bit. Next weekend we are having a Cinco de Maya birthday celebration and she’s so excited. “I turn five!” she says to me daily. Yep, you’re turning five, kid, and it’s breaking my heart. It’s a good thing you’re also the glue that keeps it together.
Thanks for reading, friends. I’m sorry it’s been a year. I hope to get back to it with some sort of regularity and not let it build up so much. If you’re new to Maya’s story and would like to read from the beginning, here are my previous posts for Defying Disabilities. Sweet dreams!
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