When Sarah Kate had her selective dorsal rhizotomy (SDR) eight years ago, I kept a small blog for friends and family to follow her progress. I discontinued posting on it several months later when things had settled back down, but I’ve never deleted it in case it could be of help to someone else.
At clinic last week, I told Sarah Kate that Lisa, the physical therapist that was there, was the lady that “broke her spirit when she was three years old”. I’ve told the story many times about how the post-SDR rehab involved a standoff between a very strong-willed Sarah Kate and Lisa, but Lisa (eventually!) won out. As I remembered it, the incident happened on my birthday, so I found that day on the old SDR blog and re-read the entry.
As it turns out, I was wrong about the date, but I found the following instead:
Today, Lisa, the lead PT, spoke with us at length about Sarah Kate’s future and what we should expect. Although we knew going in that the SDR surgery was not a “silver bullet,” things have gone so well up to this point that we’ve been, in some ways, negatively affected. She told us that corrective surgeries are still highly likely down the road, although most likely only during the years when she reaches the growth spurt of puberty. It’s not much fun to think about this condition as a permanent journey of doctors, therapies, and surgeries. I have had to remind myself, though, that the outlook would be much bleaker without this first surgery. SDR is the only preventive option available for kids with cerebral palsy. Everything else is corrective. For now, we must continue to keep our perspective in the here and now. Tomorrow is unknown, and is in God’s hands.
Those words I wrote long ago gave me pause. I was so much greener in those days, with only three years of the special needs parenting life behind me, yet I could have written them today.
I wish I could go back and ask that version of me what I expected of Sarah Kate and her future. Did I believe she would someday be on the swim team, play softball, or ride a bike? What did I envision the future surgeries to look like? When I wrote that she would likely have them, did I believe it, did I secretly hope that Lisa was wrong, or did I just try not to think about it at all?
I have no idea.
What I do know is that I’m bitterly disappointed that she’s facing major surgery today. It’s difficult to accept that we’ve fallen so quickly from celebrating the peak of her abilities to … this and this. That’s if we’re lucky – it might be this and this.
Over the years, there have been plenty of times when she seemed to plateau – periods when I wondered if she’d reached the limit of her abilities. During those times I was always willing to accept that whatever level she’d reached might be As Good As It Gets. Now I’m staring into a black hole, fearing that As Good As It Gets was a fleeting moment – a few months in her tenth year that may never be repeated.
It’s a bitter pill to swallow.
During the clinic visit, when Lisa and Dr. Doyle were debating the best course of action for Sarah Kate, one of her responses to him was that Sarah Kate was a “hard worker” from a “motivated family” – it was one reason she used to justify a more aggressive approach. Her words hung in the air for a moment as images of Sarah Kate’s years of therapy flashed through my mind.
I chide myself almost daily for not doing more, and Sarah Kate can probably recite the speeches about the importance of stretching by heart. After all, no matter how much therapy you do, it is never enough. But Lisa was right. She may get a tween attitude in therapy and she may whine a little about stretching, but she has always been motivated to do things and go places, and doing and going require movement, and in order to move she has to fight her body’s limitations.
I don’t know if she’ll win the fight, but I know she’ll give it her all.
So there’s a part of me that is, as I said, bitterly disappointed. But there’s also a part of me – the same part that wrote those words back in 2006 – that accepts that It Is What It Is and her future is in God’s hands. It will be okay, whatever “it” is.
I promised you some of Sarah Kate’s thoughts, but I’m going to have to disappoint you. Sarah Kate has an indomitable strength and despite knowing what lies ahead for her, she has little to say on the matter. As you might imagine, she’s not excited about the prospect, but as with everything else, she seems to be taking it in stride. She has struggled against her body so mightily for so long, that this next step is just another challenge along the journey.
Honestly, I know you’re disappointed at the prospect of SK needing surgery, but it helps to look at it as an opportunity to improve, not a failure. My mom took the same view as you when I needed surgery for my CP, and because of that, I always felt like resorting to surgery was like a punishment, as if I had let everyone down for not stretching enough. I’m not saying that SK feels like that, but the truth is that surgery with CP is pretty much inevitable because of growth, no matter what you do, so don’t beat yourself up over this. And having had 2 of the procedures SK is considering, I can say that the surgeries honestly help SO MUCH! My mom cried seeing me standing after one because she didn’t realize how badly my knees and posture had been bent until they fixed it. I know it’s hard, but the results will hopefully be worth it.
Thanks so much for your perspective, Jane. I really hope Sarah Kate doesn’t feel that way – we have talked to her a lot in recent months about taking responsibility for her own care as she gets older, so now I am worried she may have taken that in a way I didn’t intend (that didn’t even occur to me, for that matter). I am THRILLED, however, to hear that the surgery helped you and you (presumably) feel like it was worth it. After having a few days to marinate I feel better about things than I did initially – less apprehensive, at least. This, too, shall pass. 🙂
My hearts aches reading this. Sending hugs and encouraging you to look for the sunshine. It’s always there, even behind the clouds. (Someone I really admire once wrote a book about just that thing.)
🙂
Sending SK and all of you hugs as you face this next hurdle. Her spirit and your support will bring her to the best outcome possible. Even with some the teenage attitude that may soon come her way, she will prevail. Good luck with all of it!
Sarah Kate is going to have a wonderful life. She has a great, supportive mom looking out for her, and she is blessed with the gifts of strength and determination. You are doing the right thing. Best wishes for the best possible outcome.