Single Parenting A Special Needs Baby
|F At Her 2YO Well Baby and self portrait|
I never had an opportunity to process F's Down syndrome diagnosis. My husband was with me for that ultrasound, but he never talked to me about it the whole rest of my pregnancy. I have always wondered why.
Married or not, I have always been a single parent. Other fathers, even military fathers with limited time at home, take an interest in their children and have a care for their wives, but that was not my lot. In my 25 years of motherhood, I have never gotten a break from caring for my children. I found ways around that, like bubble baths or romantic comedies enjoyed after the children were in bed, but it would have been nice to get out with girlfriends now and again. It's funny that, right now, he thinks I'm preventing him from having time with F. I'd love it if he actually stepped up to take care of her. I'm looking forward to an afternoon in the woods all by myself.
F's Down syndrome means that she has a ton of therapy appointments. Because of her young age, those therapies are provided in our home so we don't have to travel, which is nice. Right now, they occur via Zoom, which is less nice, because F isn't really getting the therapies she should be. We just got the go-ahead for in-person services to resume, so as soon as I can get a mask exemption for her, we should be good to go. Whether online or in person, though, it takes a lot of time out of our week.
Sometimes it seems like it's all F all the time. I'm always trying to get her eat nutritious foods, to walk, to talk, to socialize, to not throw things at her brother... usual things, some of them, but everything seems magnified because there's just so much. She doesn't just learn things; she has to be shown how to do every single thing, even how to swallow effectively. It's intensive.
I keep lists of time spent with the other children, just to make sure no one is being inadvertently neglected. Maybe I try too hard with that, because I end up neglecting me. One of the reasons I don't sleep very well, I think, is because I never have a quiet, just-me moment. I'm always doing things for everybody else, providing for their needs, and I don't even have time to evaluate my own thoughts. I haven't really processed my divorce or the trauma of my marriage or thought about what my future might look like. I'm just doing the next thing every day and hoping it works out in the end.
It probably will.
I love F with my whole heart and soul, and I wouldn't exchange her Down syndrome diagnosis for an easier sort of baby. It's just who she is. But that doesn't change the difficulty of the path we have to walk. Sometimes we spend so much time advocating for our kids that we fail to acknowledge that.