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facts & arguments

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In February, I sprained my wrist while attempting to clear the heavy snow and ice from my driveway after the third winter storm to hit us in one week. It left my right hand swollen and my entire arm in a state of pain so intense that it kept me from sleeping and forced me to take ibuprofen, which would later leave me nauseous.

Although not a serious injury by any means, it took me on an emotional journey for which I wasn't prepared – a very real glimpse of my youngest daughter's reality.

I am haunted now by the knowing look on her face when I winced in pain just momentarily while struggling to open a container of peanut butter. The look said, "I know, Mom," just before she reached for the jar, opened it for me and silently walked away.

My daughter Catherine knows pain. She's only 12, but she knows what it's like to have swollen joints and to take medication every day that can make you feel sick, usually at the least opportune time. She was diagnosed with juvenile idiopathic arthritis just 10 days before her eighth birthday, though the pain had been there long before it got a name.

For three years it had been simply the terrifying mystery that caused her to wake up screaming and writhing in agony for hours in the middle of the night, and to have low-grade fevers that made no sense. The fevers made her skin so hot that I remain convinced I could have fried an egg on her back had I tried.

Juvenile arthritis was the invisible entity that robbed my husband and me of one of the most basic milestones of parenthood: cheering our child on as she rode down the street on a bike for the first time.

Instead, we look back on those moments outside with her and her bike and are speared by guilt for having been frustrated, for not listening or understanding.

"Just pedal," we would say. "What do you mean it hurts? For heaven's sake, just move your legs!"

We didn't know. We didn't know for a really long time.

For years, her pain was blown off by doctors as normal growing pains. It wasn't until her knee finally swelled that it was agreed by all that "normal" no longer applied to Catherine's symptoms, and a search for the real cause began.

The search took our family on a roller-coaster ride of "maybe it's this," or "maybe it's that," followed by various combinations of blood-tests, X-rays and CT scans whose negative results left us with a mixture of relief and disappointment.

I should probably mention, as well, that I'm a fainter, which complicates things when your job as a mother is to put on a brave face and be strong for your child so they know everything is going to be okay while they undergo medical tests. I fear I wasn't all that convincing lying unconscious on the floor of the lab most times she needed blood work, though I will argue I was probably a good distraction from the needle in her arm.

We spent nine hours in the clinic on the day of her diagnosis. We were relieved that we finally had an answer and that her condition wasn't life-threatening. Little things that had baffled us suddenly made sense: She couldn't ride a bike because she didn't have the range of motion to pedal; skating hurt her because the disease had caused one leg to grow longer than the other.

The relief did not last long, though, and fear returned when we learned that her subtype of juvenile arthritis puts her at risk of developing a serious eye disease that can lead to permanent blindness. Not only would she need regular visits with a pediatric rheumatologist, but also with an ophthalmologist.

We learned how much damage the disease had done to her little body already and what the long journey to getting well would look like. She would need daily medication, extensive physiotherapy and – just five days after diagnosis – surgery to drain fluid from her knee and inject it with medication.

My adjustment to my new role of parent-physiotherapist-medicine-dispenser-pain-management-expert was anxious and hesitant at first. But when I discovered that about 24,000 Canadian children live with this disease and have parents who care for them, I figured there might be others in my community who were dealing with the same issues and challenges. It was just a matter of finding them, and I did: at the Arthritis Society's Camp JoinTogether, a one-week summer residential camp for kids in the Maritimes who are living with juvenile arthritis.

The camp gave Catherine the chance to meet others who understand her challenges and gave my husband and me the opportunity to connect with parents going through the same issues as we are.

Camp reminds us that our kids are resilient. They move forward even when they're in pain. They run, jump and swim. Stopping isn't an option for them.

My sprained wrist and the jar of peanut butter reminded me just how amazing that fact really is.

Lisa Pomfrey-Talbot lives in Bridgewater, N.S.