We all have our parenting strengths, and families often go through challenges that test us. There are the small but normal developmental hurdles like the first time your child sees what will happen when they hit mommy in the face or try and cut off their own hair. There are the slightly cringe-worthy times they fall off a swing or fail a test in school. But then there are those heart-lurching, life-shifting moments when a threshold is crossed, and everyone involved has to adjust.
I thought I was a pretty wise and mature parent, but cursory wisdom gets overshadowed when you encounter someone who has harnessed a life-shift and risen above the occasion. I was privileged enough to interview Nicole Barry, whose 10-year-old son Conor lives with a form of childhood arthritis which affects the spine. Her shift in priorities towards wellness and balance has hurled her entire family onto a ground-breaking trajectory.
Many of us may think of arthritis as a condition that our parents or grandparents might someday have. In our minds it requires canes, body rubs and baths. But no. Not only is it far more complex that this basic stereotype in adults – but it also affects more than 24,000 children in Canada. That’s 3 in 1000. Childhood arthritis takes many forms, any of which can have potentially devastating effects on developing bodies. And did you know that arthritis is one of the more common disorders resulting in chronic disability in children and teens in Canada?
Juvenile arthritis is a heart-wrenching disease, because not only can it affect growth patterns in kids, but so many different facets of life – from participation in sport to self-esteem.
What struck me in learning more is that arthritis isn’t just about joint stiffness. Eye and vision inflammation issues often develop, as do digestive difficulties. Some types are auto-immune diseases, meaning that the body’s own auto-immune system begins to attack healthy tissue. Fevers, fatigue, anemia, swelling and weight loss are all possible complications of childhood arthritis.
March is Juvenile Arthritis Awareness Month, and to be able to learn and share many facets of juvenile arthritis, I delved into the story of Nicole and her family in our Eavesdropping podcast. There were times when I grew silent, wiping tears from puffy cheeks as I tried to ask another question without any listeners knowing. There were times when my anger at school bullies and unaccepting friends got the better of me. Throughout the story, though, I was struck by a mother’s love, who rose above and now works as an advocate for youth suffering from this serious condition.
We all get into a routine, and once our kids are well into school age, we aren’t really expecting complications. In hearing the story of how Conor had tremendous foot pain and parents who followed their instincts in getting further testing, my heart skipped. We must all trust our instincts.
From there he was diagnosed with ankylosing spondylitis, a type of rare inflammatory arthritis that affects the spine and the sacroiliac joints that attach the pelvis to the base of the spine. He couldn’t play sports with his friends anymore. Eight-year-old friends don’t really understand this inability to play man hunt and capture the flag any longer. After being placed in a wheelchair and learning coping tactics for his new condition, peer bullying became unbearable. A new school, health care team, meeting other kids affected by arthritis and a family focus on wellness changed things around for everyone.
Two years later, Conor is working with other youth, has found the support of resources within The Arthritis Society and has finally been given the go-ahead to once again participate in the sports he loves.
My podcast is below, and for further information The Arthritis Society website is a wealth of knowledge and support: http://bit.ly/2F6GiMz. You can download Eavesdropping on iTunes or Google Play to listen whenever you are able.