Having a child with a disability means dealing with chronic health issues. Most of the time we’re cruising along pacing ourselves just fine, sometimes even forgetting that we’re on a long arduous journey.
And sometimes it feels like there’s always something. If it’s not a new set of seizures, then it’s a surgery. If it’s not battling insurance for a bed then it’s trying out a new medication.
I’m not doing this alone. Not by a long shot. I often try and because this is such an ongoing battle, I can’t stand asking for help or feeling like a drain on others.
Aidan was in the hospital this week just for two days. It was planned and short. But still, each hospital visit brings every other hospital visit to the table. The ones that lasted too long, or gave bad news, or were just frustrating.
By all accounts this visit was easy peasy.
And still, my village showed up en force.
There was the friend who showed up with a ridiculously generous goodie bag with good food and trashy magazines. I was in a medical meeting when she arrived so instead of having a nice visit, she took Aidan driving in his wheelchair. Because I trust her so much I sent her off without instructions. There’s a story there about getting stuck but in the end I got my kid back, she helped out, and I was able to listen to the medical team.
There was the aunt and cousins who showed up with dinner. The one I loved for dropping the F-bomb without realizing she was in a children’s hospital. Oh, to be such a foreigner to these places. They brought family gossip and life talk to the teeny tiny child sized table where we shared a meal.
There was the friend who met me at the door when I came home spent and exhausted and just done. She fed Aidan and entertained him. Then when she put him down for a nap she joined me in the kitchen to chop and cook and measure for my boy. There was laughter there too because sometimes this medical life is ridiculous (and just maybe I peed my pants a little too).
Then there was my friend who is The Fixer, my personal Olivia Pope. The one who gets called in a crisis, handles it efficiently, and then discards any evidence. She was waiting in the wings, always prepared.
And always there is Liam and Garreth. They FaceTimed in each evening and sang Aidan his special Goodnight song and made silly faces.
I’m home and tired. I started the day triumphant and ready for battle and ended it with a beer in the tub having tapped out of parenthood.
It’s a new chapter of this chronic life and I am not alone.