Life is more complicated when you have a child with complex medical conditions.
Every part of your day carries with it a deeper level of worry and anxiety that something might go wrong... or that something already is going wrong.
As a mom with complex post-traumatic stress and high anxiety induced by repetitive medical emergencies with my child, these worries of "things that might go wrong" and "things that are already going wrong" are near constant on my mind. Certainly, the ADHD doesn't help the matter.
Even now, at 7:37 am on Monday, January 2nd, Malachi has fallen back to sleep after an entirely typical night for him of random periods of waking and sleeping that require us to be up and down, up and down with him.... A seemingly average night for our family. But in his falling back asleep, I immediately begin to worry about the deeper meaning of that sleepiness. It is unusual, and so I worry.
How I wish the first thoughts that pop into my head in these times of deeper rest are happy, excited ideas. Ideas like:
"Oh, wow! I bet he is going through a growth spurt!"
"He has been working so hard at school. His little brain deserves that rest!"
"We were really busy over Christmas. No wonder he is so tired!"
Mundane, benign, unexcitable thoughts... or, perhaps, better said, the learned expectations of a parent never having grown to assume the worst -- that something is wrong, or will go wrong, or could go wrong, at any moment of the day.
I wonder, often, what it is like to live that parenting experience.
I wish, often too, that I could think those unexcitable thoughts. But that is simply not my lived experience as a parent. I will never know that side of the coin.
Instead, as my son snoozes away well past his usual morning wake-up time, I think immediately:
Is he sick? Is he coming down with something?
He was a little quiet yesterday?
Should I take his temperature and give Tylenol to head off any trouble?
Did his nose seem a little raw last night? I think so.... No, no, it was probably just from being outside....
And on and on.
Even those are pretty average questions, though, for parents of young children.
Except, my questions must continue...
What if he is ill, and it triggers a seizure?
What if I can't stop it at home again? Do I have all of the emergency supplies at his bedside? I need to check everything again as soon as he wakes up?
What if we need to call 9-1-1? Will the EMTs be able to stop the seizure?
What hospital will they send us to?
Our regular children's hospital is still strained from all the other respiratory cases?
Damn people not wearing their masks.
Will they send us to a regular adult hospital again? Ugh. They never know how to treat us. We scare them.
What do I need to say to get us redirected to the children's hospital? I need to make sure I'm prepared to make my case.
On and on and on....
When you are the parent of a medical child, the worry you have as a parent is compounded by the worry you have as a caregiver and that is what makes all the difference.
Everything is more complicated.
It has more layers.
There are more worries to consider, more planning that must always be done...
In case those worries turn to something that actually needs to be worried about.