The Ridding Family Story – SBCAN

The Ridding Family Story

In July 2009 I sat in a doctor’s office, 22 weeks pregnant, and was told that my unborn son had spina bifida. I knew in very general terms what spina bifida was but didn’t know anyone with it or what to expect, other than what the doctor was telling me; just an abstract concept of how difficult life with spina bifida would be.

During this time, I found a lot of support in online forums and blogs (this was before Facebook groups existed) and learned what childhood and adulthood with spina bifida looked like. We consulted with doctors at Sick Kids and Holland Bloorview and underwent multiple tests and appointments. In 2009 prenatal surgery was still experimental in the United States and Canadians were not eligible to participate. While this was disappointing and frustrating, we knew that fetal surgery was not a cure, and we waited for him to be born before having surgery. Nick was born, right on time in November 2009. I got to see him and hold him before he went across the street to Sick Kids for his first surgery to repair his back. He stayed in the hospital for 2 weeks before we could take him home. Nick developed symptoms of hydrocephalus and was back in the hospital for a shunt a couple of days later.

Over the years we have had many, many doctors’ appointments and tests, brought home medical equipment, mobility devices and had to figure out how to adapt things in our home and environment. I have sat in a surgical waiting room, beside a hospital bed and through therapy sessions many times, watching my child working hard or struggling. I have sat at the computer researching terminology, surgeries and symptoms and asking for help and advice. I have emailed a neurosurgeon at 4am.

I have celebrated the first belly laugh, first steps, first words, first A’s in school, first friends, first sleepovers and a first week away at camp. We share laughter, share love, make amazing costumes every year, share interests as a family, and celebrate every day. I have made many friends online and in person, who share this journey with us. I have found my voice to be an advocate and a passion for education and sharing the knowledge I have gained through this journey.

Every day of our family’s life together I remember that day, sitting alone in the doctor’s office, and think how much our life has changed and how much joy, celebration and laughter that is our life.