“We’re very proud of our girls for showing the fortitude needed to not let these diseases define them.”
I would love to say that my girls couldn’t tell you what JIA stands for, or what scoliosis, enthesitis, and crones are. The sad fact is they know these terms very well and have each lived through various extremes of the diseases from young up to and including now. And although you’ll read below about the tough times they and we went through as a family, there are a couple of undeniable positive outcomes these diseases gave us. 1 – The adversity of all of it brought the four of us closer together than we ever would’ve been had the kids had a “normal” childhood. 2 – That same adversity and will, to not let the disease win no matter what made our girls tough as nails. They are a force. The way I see it, JIA was either going to break us apart or bond us tighter than imaginable. Thank god it was the latter.
Our family got the shock of our lives one fateful day 16 years ago while at Toronto Sick Children’s Hospital when an orthodontic head surgeon pointed to a 180-degree x-ray of 8-year-old Vanessa’s TMJ, turned and asked us “How long has Vanessa had juvenile arthritis?”. Arthritis for kids?? That’s a joke, right? This was after we spent the prior year going from our family doctor to numerous specialists trying to understand why Vanessa’s jaw, teeth, and ears were changing shape abnormally.
The typical stages of grief began that day and did not let up until Vanessa was discharged from Toronto Sick Kids Hospital as an “adult” at 18 years of age. Grief – shock, sadness, anger, and thankfully (finally) – determination. Determination to try to not let this disease – JIA – become the defining aspect of Vanessa’s life.
Sarah’s battle included wearing a full torso brace for 2 years, from wake-up until bedtime. Suffice it to say she was not enthusiastic, claiming it cramped her style! Who could argue? The enthesitis brought on bowel irritation where she had to swear off all dairy, oily or rich foods, and still does. Not so easy for her as she has the same ice cream addiction as me! The IBS/crones symptoms prevented her from fulfilling her goal of getting into the Canadian Armed Forces, having them reject her physical, despite passing all other tests. Sarah has grown to be a very physically capable young woman, having found a love for heavy weight-lifting exercises. She still has occasional hip pain and limitations but nothing that is stopping her from going after all her dreams!
Vanessa’s journey was longer, having been inducted into the JIA program at Sick Kids from 8 years old and all the way to discharge, and now an adult with a rheumatologist she sees regularly. JIA caused facial deformities that brought on severe bullying at school, difficulty eating, excessive amounts of missed classes, and ultimately, a boatload of medications and surgeries throughout the 10 years at Sick Kids. Sick Kids had a program run by volunteers called “About Face” and Vanessa was actively involved, finding solace with many kids who were experiencing similar challenges.
When she ‘aged out’ of Sick Kids care at 18, they had an amazing graduation ceremony for all kids at that critical stage. They brought Jacob Tremblay, the child star of the 2017 movie Wonder, and had a private screening of the movie in the hospital theatre! Jacob had previously consulted with many of the teens for that movie, getting to better understand life with a facial difference. The four of us attended the event and I was struck by how stark the difference was between how Vanessa looked and many other teens who were still very from the end of their journey toward looking and feeling “normal”. I credit the amazing skill of the plastic surgeons and rheumatologists at Sick Kids for helping Vanessa get to the point where you would never know she had suffered any such disease! The cost? To name a few – reconstructed chin with bone extracted from her hip, titanium plates and screws to extend her TMJ, ears pulled back, and countless orthodontic procedures to get teeth that put mine to shame.
Although JIA still impacts her life, she has recently found a new medication that is working incredibly well and we are so grateful for this. She is an active TaeKwonDo student who can do the splits easily, can rock climb, and run like a cheetah!
We’re very proud of our girls for showing the fortitude needed to not let these diseases define them.
As a father, I have to believe that many family men find themselves isolated when this disease takes hold. For me, it was my wife who handled the majority of the appointments while I focussed on my career and goal of earning to support a single-income household over many years, while also trying to somehow stay involved with my kids’ health needs. I don’t know how we would’ve managed it all if not for the weekly support of my parents jumping in to watch the kids or taking them to an appointment when neither of us could. It is amazing how much you depend on your entire family and friend network when you have sick kids! We’re so grateful.
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