I have come to realize that I don’t post very often in the month of August and it’s because it’s the month that comes with a return to school and all the pieces involved for a child like Chase.
Last year, Chase missed a significant part of his sophomore year. This year, he’s hoping for better and more, but he’s afraid too.
Every day it is a challenge to help him wrap his mind around his symptoms and try to figure out what needs to be reported and monitored, and what can be ignored. [easier said than done, for sure]
And me? I’m filling out all the papers and sending emails and working with his hospital and this most incredible support network just to get Chase in the school building and allow him to be there all day.
This last week, I was at the school almost every day (forms, medicines, low blood pressure intervention, etc)… BUT …so was Chase. [winning!]
The intersection of a medically complicated life and a typical school day is an interesting space to inhabit.
I wish I could take his struggle away from him and give him a day to just be.
Instead, I find myself preparing him for the pain.
It might not stop hurting, but that’s okay and he’s okay.
I mean, he’s absolutely not okay, but also, he is… you know what I mean?
This is the normal, not-normal of his life.
Everything hurts, but he’s stable. And that’s a brutally lovely thing to be.
I can’t take any of it away, so I remind him that he’s safe and loved. And then I’ll fill out more papers and send new emails and take a deep breath.
My goodness… the act of onboarding this entire precious crazy train of a life into a school district is not for the faint of heart.
Choosing hope. And sending all the love to everyone out there on a similar journey…
Moment by moment
**Also, junior year… can you believe it? He’s working on his life skills and even doing some cooking, taking a class on the history of rock and roll [and wanting to talk through the whole class because he loves music so much], and will hopefully feel strong enough to help the football team**