When there are no medical answers

By Louise Kinross

"This is not my fault."

That was the key message I picked up on resilience when I read this Facebook post by Lean In author Sheryl Sandberg after her husband died suddenly and tragically last year. Adam Grant "told me to ban the word 'sorry,'" Sheryl writes. "To tell myself over and over, This is not my fault." 

I was trying to apply it to how I felt after a visit with my son to a surgeon didn't go as I had hoped. My son's curved spine, which developed suddenly over the last year, is worse but the surgeon doesn't want to operate. Because it's high up, if he straightens it it will move higher up, meaning he would probably have to fuse his spine up the neck to correct it, so my son would lose all movement there. There are also serious, serious risks.

But there is no way to prevent the curve from worsening. So when I got out my little blue leather notebook, with the gold tinted paper, and read through the prevention strategies I hoped might work, they were all discounted.

No, correcting his leg length difference caused by a previous surgery wouldn't help because it's not the main cause. No, wearing a brace wouldn't be useful in this case, even though it's helpful when teens develop idiopathic scoliosis. In our case, it would just make our son's muscles weaker. What about if he wore it at night? No.

No, there isn't a different kind of surgery that could be done. And no, even though there was a cheery picture on the wall showing a teenaged girl before and after her fusion surgery for idiopathic scoliosis, that was not the same beast we were dealing with. It didn't have any relevance to our case.

He would do the surgery if he thought he could help my son, but he didn't. He couldn't promise that it wouldn't get worse, and I didn't have the nerve to ask "Will it get worse?"

Which left me back at: "What are we going to do?" I started scanning the pages in my notebook again. But all I could see was #1, the leg-length difference question. I knew he'd said it wouldn't help, but I couldn't stop myself and asked again. 

I was in desperate mother mode.

I never thought that at age 22 my son would be facing a new health crisis. For some reason, when he was little, I imagined we would have everything uncovered and figured out, as well as was possible, by then. 

I'm angry at his syndrome, a bone disorder, angry at the limits of medicine and angry at my limits as a mother. 

"There wasn't anything I could have done to prevent this, was there?" I ask his dad. I've been trying to get someone in the adult system to see him about his spine since last year. 

Then I remember that when he had his hip surgery one of the surgical fellows told me he had soft bones, like an elderly person. Other people with this syndrome have developed a curved spine, in spite of what their parents did, or didn't, do.

I hate it when he has a bad pain day and moans and I don't have a good answer when he asks when it will be better. 

I tell myself I have to be flexible. I have to adapt. They will see him again in a year. In the meantime, I have to get used to not knowing what is going to happen, and not being able to do anything about it.

When I want a break, I can walk outside and sit under these giant trees in Spiral Garden, the ravine area that is an arts camp at Holland Bloorview. 

"It's not my fault."

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Maybe if I squint, reality will look different

By Louise Kinross

It must have been because I had just made a mental note that things were going quite smoothly for my son with his post-high school transition and he was quite happy.

It was that same night that I learned from a private physio that he had a curved spine.

I had been trying for months, to no avail, to get someone in the adult system to see him due to concerns that he was walking with a crooked gait.

In the last 24 hours he’s been seen by a specialist and had x-rays taken and I’ve learned that many youth with my son’s syndrome have had surgery for scoliosis and/or have had exostoses—benign bony growths—removed from their spines.

I recall seeing scoliosis listed as one of dozens of potential symptoms associated with my son’s condition. But for some reason I never connected it with my son as he’d had no issues in this area and they typically show up in the teens.

I went onto the Facebook group for parents of kids with this syndrome last night and asked about others’ experiences and was astounded by the number of messages that came back.

So now I’m sitting with the fact that there may well be another surgery or intervention of some kind in my son’s life. His last was last summer.

I took the physio’s suggestions and went online. I ordered lateral supports to try to keep him straight when sitting—at great cost—from the U.S., as well as a special stool. Then we went to Walmart and purchased the table she recommended. Oh, and on the way back, we stopped at Foster’s shoes to ask them to put an additional lift on my son’s shoe.

The lateral supports, which came yesterday, aren’t working that great, but who wants to pay even more money to courier them back to the U.S.? Thankfully, a parent on the Three To Be Facebook group told me about a brand that was cheaper than the original product we looked at. I can’t help wondering why these items aren’t available here? Is it necessary to order from the U.S.? Or are these companies benefitting from my sense of desperation and urgency?

The other thing the specialist said was that my son looked like he was in pain because he’s carrying his body in an awkward position. My son has a very high pain threshold. Recently he’s been asking constantly for back rubs, which he signs as “chop chop.” So we got out the Tylenol last night.

And I almost feel like if I just keep this whole thing to myself, maybe it won’t happen? You know—the magical thinking that Joan Didion talked about in her memoir about her husband's death?

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