synapse |ˈsinˌaps| noun – a junction between two nerve cells, consisting of a minute gap across which impulses pass by diffusion of a neurotransmitter.
ORIGIN late 19th cent.: from Greek sunapsis, from sun- ‘together’ + hapsis ‘joining
I might be a bit of a brain nerd. The more I come to understand Aidan’s disability, the more I respect the brain and am awed by its power. Though it’s been the source of Aidan’s greatest struggles, it’s also displayed it’s complexity through his delayed development. I’ve been privileged to see it’s work in slow motion.
In the beginning, when I was first taking in Aidan’s medical issues, I considered them as all being connected to muscle tone. He was too weak to hold his head up. Then too weak to move much at all. He was too weak to do all that important sucking that babies do to strengthen their jaws and slim down their cute fat cheeks for later speech. While he’s learned to feed himself and move around, it all takes a lot of strength because of his low tone.
Now I see everything as connected to the brain. There’s the obvious, the seizures that interrupt his learning and steal his progress and put him in danger. But it’s also his brain that bosses his muscles, that has failed to give them the command to be stronger.
It’s a bit of a love/hate relationship I have with these synapses in Aidan’s brain that through a failed game of Telephone have left him broken but have also allowed him to be smart and independent.
These synapses in Aidan’s brain and all they’ve brought to my life have allowed me to connect with people. Here on the blog I share my stories, hear your stories, learn, and feel less alone.
I meet people for coffee. That’s actually my very favorite thing to do. I listen and say, “me too” or often, “wow, really?” and sometimes, “did you know..” and also, “wow – I didn’t know.”
Being connected has brought more than emotional support. I’ve talked through information regarding surgical procedures, meds, different professionals, and services. I’ve met my PURA gene family who are all connected because our kids have similar medical issues and physical features as a result of having variants on the same gene. This small joining together of ideas and stories and hearts and information is changing lives.
I’ve been talking through this idea of being connected with a friend who is an artist. She graciously put my thoughts into a few paintings. I’ve stared at these watercolors at length, always seeing news ways that colors and shapes pop and explode and sometimes wander away from their starting point changed. It feels like a perfect meeting of science and art and emotion.
Synapse – the brain connecting the body, our selves connected to each other, together impacting the world.
Team Aidan 