We waited to hear back from Sick Kids. Two weeks went by. Then three. Then four. The entire summer was passing us by as we waited for the MRI results. I played a lot of phone tag with Sick Kids Hospital. It turns out that when you’re referred to an MRI by an ER doctor, no one knows where to send your results. In the meantime, my poor girl was hobbling around on crutches and munching Advil like candy – but it wasn’t touching the pain.
This is the summer that the parental guilt really kicked in. More like parental despair, really, since Olivia’s pain was this tangible thing hanging in the air every second of every day. We went from an active family of six to a family of 5 plus one in a wheelchair. Everywhere we went, we had to second guess our choice: is it a long walk? Do they rent wheelchairs? Will it cause Olivia more pain?
It also didn’t help that she was 9 years old and extremely embarrassed to have people stare at her in public. She started wearing a tensor bandage so that people would assume she sprained her knee, hoping that they would walk away without staring. This was our new learning curve for the invisible illness part of life: people couldn’t see her left hip. People couldn’t see her pain. People couldn’t sympathize because they didn’t know why they were supposed to be sympathetic. Let’s just say that we learned a lot about people during this time.
Another thing that didn’t help was that when Olivia wanted to walk, she had to use her crutches. She had developed a severe limp and looked like one shoulder was higher than the other. Her body looked like it was twisting from the inside out (which actually was the case as she had developed functional scoliosis from limping). The problem with the crutches was that they were hurting her armpits, so she had to really choose when to walk and she had to decide how far she could go. Our entire family’s existence was reduced to our daughter’s pain tolerance.
Even though she was using her crutches to get around, we knew we needed to do more to increase Olivia’s mobility while we were waiting for her first Sick Kids appointment. Our lives were in a kind of limbo. We couldn’t wait for specialists or a firm diagnosis so we made our first real medical purchase that summer: we bought our 9-year old girl a wheelchair. And it became a regular part of our lives.