I've been thinking about how we trick ourselves into believing that we know how things will play out. This has been a particularly shocking revelation for me as I have tried to control nearly every aspect of my future for as long as I can remember. There were parts of this that were conscious (get good grades, go to school, use birth control, wear a helmet, limit carbs, don't be too dumb) and parts that were working underneath my veil of awareness this entire time. It wasn't until my infant son was diagnosed with a disability, for which we have yet to learn the severity, that I realized how much I assumed I knew. Turns out, this moment, this one right here, is all there is.
We project into the future visions of being at our child's soccer game, because surely, they will be ablebodied and have the physical prowess that we have all enjoyed. Why wouldn't they have use of their legs? Disability is something that happens to other people and as I type this, I chuckle because our able bodies are but on lease. Age, disease, accidents, they are all waiting for most of us. Very few of us enjoy happy, healthy, happy, healthy, dead. Instead, there is a period of time where our spirits and our bodies disagree.
My son's diagnosis is called Polymicrogyria, which for the life of me, I cannot pronounce. I am taking this to mean that the diagnosis is not actually that important. Some people live with Polymicrowhatever their entire lives without knowing and then discover after they've hit their head and receive an MRI, and others are profoundly disabled because of it. I'm learning it really depends on what parts of the brain are affected and how badly. There are lots of encouraging signs about Andrew's prognosis but it is a waiting game and to be honest, I find it ironic that of all the scary diagnoses out there, he was given the diagnosis with no prognosis. I have caught myself thanking the Universe for this because it let me keep the magic of possibility, determination, will, manifestation, which are all the things I owe my life to anyway. Of course they would be part of this journey too.
We waste are normalness anyway. Our beautiful bodies, our incisive intellect, our ability to learn a new skill without help from a physical therapist. Our voices. The assumption that we will develop alongside the grand mean. The blind hope that our children will bury us and not the other way around. We take it all for granted and wollow in our existential torment. It can take us most of our lives to stand up and say, "I'm not doing what you tell me to do." But people like Andrew come in saying that. And he's not only unphased, he's wildly amused.
I'll be writing about our journey and my continued existential torment (just kidding, mostly) on my new blog www.joypractice.org, which I hope to launch this month. My intention is that JoyPractice becomes a place of hope, miracles, and fun about parenting different, relationships, people who park their carts in the middle of the aisle, signs from the universe, and really, really good recipes that you can make in one paw patrol episode or less.
