Like moms everywhere, before I became a mom I had a vision of what motherhood would be like, and I also had a vision of what my kids would be like. If you’ve ever visited the blog before today, you know that the reality has been very different. Whereas I had dreamed of a car full of boys who would play baseball (or soccer or football or all three), what I ended up with was two children with permanent conditions that aren’t sports-friendly.
Like most moms of kids with disabilities, it took some time to lay to rest my parenting dreams – to mourn the children I didn’t have. It’s a selfish thing to hold onto a make-believe child, of course, but it’s only natural to struggle with letting go of something you held dear for a long time. I imagine most parents have to adjust to some extent – a mom who dreams of her daughter as a ballerina, but the daughter just wants to play softball, for example – but the adjustments are likely gentler and more natural than being slammed with a “diagnosis” like we were.
I told another parent once that Sarah Kate does therapy instead of extracurricular activities.
Whereas other girls were taking piano or dance or (fill in the blank), Sarah Kate went to physical therapy. For a long time, that’s just how it was, and I didn’t expect it to change. I was as surprised as anyone when she decided to try swim team, and doubly shocked when she wanted to play softball, as well. It was sorta-kinda like having a typical kid, except that sometimes we were skipping swim practice for therapy, or flying into the parking lot of the ballpark on two wheels after therapy so as not to be late to a game.
She was still doing therapy, but she had extracurriculars, too.
Then 2014 arrived, and not just swimming and softball, but even school came to a screeching halt because of her surgery. For months, her whole life was therapy, and I’m not gonna lie – it honked. It was hard work, the progress was slow, and worst of all, it was isolating. She didn’t see her friends for the last six weeks of the school year, at the pool at swim practice, or anywhere else, for that matter…she couldn’t even ride her bike down the street to hang out for a few hours.
She was back to doing therapy instead of extracurriculars.
At the one year post-surgery mark, she was better, but not where we hoped she would be. She didn’t play softball – and likely never will again – but she did have a small part (mostly singing but with a few lines) in a musical. She talked about trying golf in the summer, but at the last minute we discussed it with her and she opted to go back to swim team instead. She made more progress in those eight weeks than she had made the entire spring.
As a seventh grader, she’s eligible to swim for the high school team, and as of this week, she’s officially a Pirate Swimmer. She also auditioned last week for show choir…and made it. Through the fall she’ll be swimming four days a week and rehearsing one. As I type this post at 7:00 pm on Monday evening, she has yet to arrive home from school because of back-to-back swim practice and show choir. It’s going to be a busy fall, but she definitely won’t be bored. And you know what else?
She won’t be in therapy.
Her physical therapist believes that the swimming will do enough to strengthen and elongate her muscles, and that the reciprocal movement of swimming will carry over to her gait, and as such, has recommended that she be discharged from therapy. I’ve been in the waiting room many times and heard therapists tell other moms that their children were being discharged from therapy, and I’ve heard them wish families well and congratulate them on their progress. I was always a little jealous, because I couldn’t imagine that day would come for us.
When I told Sarah Kate she was being discharged, she looked dubious – “You mean, forever???” The answer, of course, is that forever is a mighty long time, so…probably not. But for the foreseeable future? Yes. Our new normal is school, swim team, show choir, church youth group, and…nothing else.
I’m glad that band is my new normal. I never thought I would play the flute.
Ha! I should have included band in the list! She’s loving clarinet this year.
I think Sarah Kate is suited to the clarinet, Swimming will build her lungs for the clarinet.
I’m pretty sure mom was just as happy as I was when we finished Pulmonary Rehab (It’s like PT for folks with pulmonary problems). At least I was entertained while I was doing things–she was sitting in the waiting room with a fish tank and a crossword puzzle book. 🙂
I’ve been that mom in the days before smartphones and wifi! More recently I’ve been the frazzled mom with the rowdy preschool boy. 🙂
Makes my heart happy for both of you. 😀
My eye’s are filled with happy tears as I write this. Andi, you are a truly amazing person ( always have been), and you are an extraordinary mother!
That is wonderful! Congratulations!
I have never been so happy as when my child was discontinued from therapy-in our case, speech therapy. Half-hour sessions that eat up at least a half-hour travel on both ends and then what can you do for a half-hour? Sit and wait with whatever other offspring I’m toting. Then the homework. No kid, no parent, ever, on Earth has liked doing those stupid articulation sheets. Ironically, my daughter shows a lot of promise singing, so she was released from therapy to continue with voice lessons and musical theatre. So much more fun for her and me. Sarah Kate will enjoy swimming so much more too. I’m thrilled for her!
Yes. This. 🙂
SK worked for this, she got it. Her PT is swimming and Drama. She’s tough, she works for her goals and what she wants in life. She falls a bit, she gets up, continues on, and she achieves her goals. She’s too much like me. Some CP won’t get in her way or get in my way. We work for it, we own it. Sarah Kate is too much like me. Vini, Vidi, Vici! We came, we saw, we conquered. Like her, my version is, “The Record Shows, I Took The Blows, and Did It My Way”
Though we were without a map, without a plan, without a destination, we knew where we were going.