After a couple of days of arriving at Sick Kids, our nurse Shantelle asked Ali if she would like to hold James for the first time. She organized the lines, set up James' biliblanket (phototherapy for jaundice), situated Ali in the chair close to James and carefully passed him to her. It was such a beautiful moment.
James' initial ultrasounds revealed a brain bleed that needed further investigation. We listened to the rounds each day and asked a spectrum of questions to the team of doctors and nurses to try and catch us up to speed with what James was experiencing. There was so much to learn. Brain bleeds were quite common occurrences for early preterm babies and for many they healed over time. We began to hear stories from well intentioned people about how their babies were also preterm and just needed more time to develop. Or, that they knew of someone else who was a premie and now that they are older you would never tell. And although these stories were hopeful, it didn't quite seem to fit our reality. Two weeks later during one of the doctor rounds they asked to speak with Ali and I after the rounds were over. I knew I wasn't going to like what they had to say. The doctors said that they had found results in the MRI scan that suggested some damage had been done to specific areas of his brain due to the lack of oxygen at birth. We were told that James would very likely have spastic diplegia, a form of cerebral palsy, which is a movement disorder affecting primarily his legs and gross motor ability. However, the doctors also said that even though this damage is present in the MRI, the brain has plasticity, meaning it can create new pathways and rewire as we challenge James in reaching key developmental milestones.
The phrase that stuck will Ali and I during this consultation was that "James will tell his story". There are a number of ways to interpret this statement. At the time, we were holding onto the hope that James would not have CP at all. Even though it was very likely he would have CP, we held onto "James will tell his story" as a kind of postponement of diagnosis. The doctors encouraged us to do this. James hasn't shown any signs of CP because is was still so young. Our prayers were that James would "tell his story" of recovery despite scans that suggested otherwise. After all, he was only a couple of weeks old. He would have years to develop, and 'who cares if it takes him longer then most to meet his milestones' I thought. As time passed, "James telling his story" has become more about him revealing to us his abilities.
One afternoon after the conversation with the doctors, I walked down to Nathan Phillips Square to apply for Ali's PCIC and maternity leave benefits. On my way over I couldn't help but replay these conversations over in my head and question what the future would look like for my little boy. How severe would this spastic diplegia be? Would he be able to walk? What would school look like for him? Recess? Would he need assistive devices to get around? How might this cause limitations for James? These questions and a host of others came as a flood of worry.
As I was walking down Bay Street I noticed these sculptures installed on the edge of the sidewalk. They were entitled "The Brain Project". It's aim was to raise awareness and funding for brain research at Baycrest Health Sciences. It is a series of 100 unique, diverse, colourful brains.
At the time of passing by the art my mind automatically recalled the conversations with the doctors and of James' brain development. I internalized this public art installation as a reminder to pray for James. It was an unexpected, meaningful bridge between my personal world and the public realm of Toronto.
I would later come across a term I hadn't heard before - neurodiversity. It aims at levelling the playing field for what is considered normative social neurological dispositions. It argues that neurology, not unlike ethnicity, gender, or sexuality, is best seen on a spectrum. The socially accepted neurotypical brain does not necessary mean it is more natural while other brains are deficient. They exist in the colourful and varied world of diversity as well. This art installation places the concept of neurodiversity right alongside the urban connectors and pathways of the city streets, roads, sidewalks of Toronto.
My prayer for James became a request for new connections to be made in his brain and for new pathways to be formed that would stimulate his growth and development. We encouraged our family and friends to pray for this along with us as well.
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