Wednesday, April 11, 2012


I left our talk with author Donna Thomson on a high last night. She filled my head with ideas for creating a life my son values, new economic and philosophical lenses for looking at disability issues, and the notion that we as parents could align ourselves as a political movement with other groups involved in giving and receiving care across the lifespan (seniors and children).

At 1:30 a.m. Ben woke me up complaining about his right knee (the one that wasn’t operated on). He couldn’t straighten that leg and was in a lot of pain.

As I walked him back to his bed, largely carrying his weight by propping him up under his arms, he hobbled along. I looked down and hated his twisted legs and the pain they caused him. Sometimes I’m still struck with ‘How could this have happened? Why?’ Of course I know the answer, that his genetic deletion means his body can’t read its DNA instructions properly. In this case, a gene that acts in most people as a tumor suppressor doesn’t work, so bone leaks out in different places – much like a tube of toothpaste that has cracks. I understand the technical why, but not the bigger picture of why this has to happen to my son – why ALL of it has to happen to him. Why to him and not to me? Why to him and not my other children? I know the answer to that is “Why not?” but I don’t want that answer.

We saw his surgeon a couple of weeks ago to find out what we could do about the knee pain that flairs up every few days. Not much, he told us. Because Ben has dozens of benign pieces of bone in the wrong places, it’s very difficult to pinpoint exactly which one is causing the problem. The surgeon asked me if I wanted to feel and hear the ‘crunching’ of his knee when he manipulated his leg and I didn’t. I may have misinterpreted this, but it sounds like the muscles or ligaments get caught on these pieces of bone, causing the pain. I gave him Tylenol last night, knowing it probably wouldn’t be effective.

I lay in bed with a lump in my chest waiting to see if Ben would get up again. It’s horrible when he moans.

He went back to sleep, but this morning he woke in pain and didn’t want to get out of bed. He kept his right knee bent and didn’t want to straighten it. When I tried to put it in the brace to stretch it, he began groaning and couldn’t tolerate it. We put an ice pack on it and then heat, but it didn’t seem to help.

I thought about giving him a dose of hydromorphone, the narcotic he had following his surgery. I remembered calling the hospital at that time and speaking to a resident in the middle of the night to ask about dosing. “Is he breathing?” the person asked. Apparently hydromorphone can slow breathing in people with respiratory problems. I went with the Tylenol instead.

Ben couldn’t get back up the stairs to the washroom before school, so D’Arcy had to carry him on his back. Then he had to be carried down our 29 stairs to the road.

I felt guilty sending him to school but I didn’t know that keeping him home would help and I had to go to work. We sent the wheelchair, which Ben hasn’t used at school for ages. I messaged his teacher and assistant and sent in some Tylenol.

Then I e-mailed his surgeon to ask about the hydromorphone and whether it can be used occasionally.

“I thought his surgery was supposed to STOP the pain,” my younger son said, as he watched Ben on the couch moaning.

“Unfortunately he has dozens of bony growths throughout his body and they can’t all be removed,” I said.

I just had a note from his teacher suggesting we take him back to the surgeon if it becomes unmanageable. But I’m not sure that the surgeon could do anything.


I am so sorry. This breaks my heart. Sending strength and courage to you all.

Louise, I am very sorry about Ben's pain. My heart goes out to him...and also to you and D'Arcy in your own pain. It's so, so incredibly difficult when we are helpless to make everything right for our kids. I'll be praying for Ben and your family.

I was so sorry to read that your son, Ben, is so uncomfortable and I can fully understand how helpless you feel as a parent. I started reading your blog because my best friends Daughter has the same condition as your Ben although she is much younger. I worry about them every day. Like my friend you are incredible and I wish you all the best for the future.

I'm so sorry Ben is in pain. That is the worst, I think-- When your child is in pain and there seem to be nothing you can do and, for some reason, you doubt the medical community will know what to do either. I had no idea this bone stuff was part of Ben's diagnosis :(. I hope that, somehow, the pain will go far, far away.

How is Ben feeling today, Louise? Thinking of you and sending healing thoughts for Ben to be pain-free.