I write when my words fail me, when sharing my ache with my wonderful husband is out of question, because he is in the same dark place as me. Since Sara’s death we established two rules; you ask “How are you, right now?”, because intense grief can leave you elated one second and ready to jump off the bridge the next second, so you can only speak to “right now”. Rule number two is “Losing your shit is ok, but one at the time, please.
I don’t remember losing it when Sara died, the hospital stay passed in a strange suspended haze. Back then I didn’t grieve, I didn’t know how, but I had over a year to learn. This world shuttering grief can only come from deep love and back then I didn’t know how much I loved my daughter. My love for her was hidden beneath the everyday worries about her meltdowns, about her OCD monsters… Only the cruel and abrupt events of her passing could remove all these layers at once, and what I found deep below was a volcano waiting to erupt.
The volcano was boiling, sometimes rising all the way to the brim, but never exploding. It got covered by everyday worries again when Tomas was born. Within couple weeks the crust of worries was growing exponentially, he is not holding his head up, his limbs are strangely stiff, he never looks at me, or anything else for that matter…
And then the Tuesday afternoon when his diagnosis came. The force of the eruption took my breath away, for three whole days.
I grew as a human yet again, I acknowledged that I’m weak and need help, I reached out to mental health professionals, took sleeping pills to give my brain at least a fighting chance of recovery. Three long days of soul searching, evaluating and simply feeling sorry for myself. The Phoenix of my soul emerged from the fiery depths of the volcano all new, skinny new little bird, awkwardly flapping about but determined to fly. Not to just fly, to fucking soar, to reach unimaginable heights for my son, for my husband, for our grandparents, for our friends, for me…
I’m still so new to this world of disability, altered ability, developmental delays what have you. This is a completely different universe then the one I used to live in. I’m extremely competitive with a need to quantify progress. I like that about me, I also managed to “tone it down” a bit over the years, but I always felt it to be a heavy burden. The world of disability doesn’t contain any device to measure progress. For a parent of disabled child milestone is achieved, because it doesn’t matter when and how, all that matters is that it happened. The mere fact that it in deed happened is a cause for a joyous celebration, deep, profound, ecstatic outburst of all the good in the world. This world is void of expectations, deadlines and boxes to tick. The doctors, the governmental agencies try to impose those things on the parents, but they are merely devices to bridge the gap between those two worlds. In my new universe there is only one box to tick, it asks DID MY CHILD SMILE TODAY?
I used to feel sorry for parents of children with disabilities, today I feel sorry for parents of able children. I feel sad that they have to compete, compare, keep up with, perform, meet expectations… while never experiencing the deep, intense joy that only someone who lost hope, who mourned and who now lives in the alternate universe of beautiful “dis abilities” can really experience.
So did my son smile today? Yes he did and it was awesome.
ktojoy 