I was so excited to give birth to my first child, Jack, in October 2002—I naïvely assumed that he would have a healthy and normal life. All that changed when he was two and suddenly fell unconscious and turned blue in his high chair while having breakfast. He then started seizing. He was rushed to the hospital and was diagnosed with epilepsy when he had another seizure two months later.
Jack went on to have hundreds of seizures, and all treatment attempts failed even though he was taking three medications each day and trying new therapies. By the time he was seven, brain surgery was the only option left.
In January 2010, Jack underwent three neurosurgeries, totaling more than twenty-four hours, to remove his left frontal lobe. Despite critical moments and setbacks, including haemorrhaging and being rushed back into emergency surgery—which then required leaving part of his skull off his head for seven days until the swelling in his brain went down—Jack very slowly recovered. Finally, when he stabilized medically, he began rehab, which included having to relearn how to walk and talk.
To my amazement, he rarely complained and has never asked "Why me?" which has turned out to be typical of the other kids in hospital with him. Wow—what a life lesson for me about resilience!
Despite still having multiple disabilities and taking twenty-one pills a day, at age fourteen Jack is thriving and loving life. We are his biggest advocates and show him every day that disability can be a small part of an otherwise normal life and needn't be a barrier to success. He attends a special school and is also part of the Challenger sports leagues, a national program across Canada for kids with special needs—Jack even learned how to play hockey this year!
I never take a single day with him being healthy for granted.
I have come to cherish each good day and to view it as a gift, as Jack remains at high risk to start seizing again at some point in his life. My kids and husband don't know this, but each night before I go to bed I quietly put my hand on Jack's back to make sure he is breathing, and I am grateful each day that he wakes up and bounds into our room to say good morning. I never take a single day with him being healthy for granted.
Jack's experiences have transformed all of our lives. His younger brother, now eleven years old, has had to learn how to handle having an older brother with a disability, which can be a real challenge. Our entire family has found meaning in Jack's challenges by helping others. It's allowed all of us to grow from unbelievably hard times, the worst for me being when I had to say good-bye to Jack and have that "final conversation" in case he didn't make it through the emergency surgery. I truly believe this has taught me that we are put on this planet to help and make a difference in others' lives—a belief that I hope to instil in my kids.
I would love to connect with other women to lead/be part of an Option B group to learn more about how to lean in to our careers while also having extraordinary child-care needs that could very well be lifelong. By showing women thriving in their careers while caring for kids with disability, this will set up our kids for success too!
Read more about Jack's story at www.jackslemonade.com