When my son’s 20 week anatomy scan revealed a severe form of hydrocephalus, I could not reconcile this. According to his doctors, the over-accumulation of cerebral fluid would leave him with developmental delays, learning disabilities, and a low quality of life. The doctors’ words were all words of their notion of truth and reality, but did not leave room for other possibilities either. What about potential, possibility, or prospect? Various meetings with specialists and experts left me even more confused, and with more questions than I had started with.
Presented with very few options, I wanted to take a spiritual and educational approach to my son’s new life ahead. We decided to continue the pregnancy and cross that neurological bridge later. I wanted to equip myself with hopeful things, dreams and aspirations that I could plan for my son. The odds are always stacked in the world of children who are medically complex, but there is still space for hope and positivity. What can we lose by cultivating this?
I had 19 more weeks to make the best of the rest of my pregnancy. I joined a gym and I walked on the treadmill every day. I never missed a day. During my treadmill walks, I picked up the book The Brain that Changes Itself by Norman Doidge. It highlights patients with various neurological histories, and speaks to the amazing power of the brain.
The brain had been previously thought to be something very fixed, with little room to change. And it is true that for eons the brain was (and is) evolutionarily programmed to function in a set way. However, Doidge’s research and work with his patients revealed that neuroplasticity, or the ability of the brain to reorganize and change, is here to stay! How encouraging! The patients’ stories spoke to the tragedy of their circumstances, but also the resiliency of their brains and the immense capacity for the potential of recovery and renewal. New circuitry and neurological reprogramming were on the horizon, even though my son had not been born yet.
Hope from Adaptable Brains
Not many specialists had provided me with words like capable, flexible, or adaptability. I went on a search to fill my thoughts with the possibilities of my son’s brain being able to do these things, albeit in his own way, at his own pace. I wanted to take the specialists’ opinions seriously, but I also knew that I needed my own artillery of resources to prepare myself. Language really matters.
What I gleaned from reading this book was that we, too, can be hopeful of our children’s impressionable neurological capacity. We do not have to be defined by what “expert” trajectories predict.
My son additionally was born with Agenesis of the Corpus Callosum (ACC) and an arachnoid cyst that had blocked the growth of the corpus callosum, the ultimate communicator between the brain hemispheres. If he is missing it, how would he have any quality of life? However, he is showing me every day that he will not be held back by the limited views of one set of experts. It is just one angle of his situation. There are a million other angles.
Brain plasticity is a field emerging with a great tenacity to reclaim and remold old stereotypes of what the brain can and cannot do. It was and still is my responsibility to keep planting seeds of positivity and potential. My garden is looking pretty good!