Sometimes I wonder...do they know?
Things have been good here lately. But for the most part, I am just numb to the daily routine until we have a day like today.
Will has a cold. A bad one. So bad that it has affected his sleep which we JUST got under control. Last night he was awake from 4:30am to 6:30am. I do not know why, but each time this happens, it is two hours. Exactly.
Which means that I have now been awake since 4:30 as well. And that Will stayed home from school. Again.
Meanwhile, I received an email and voice mail from our county MRDD person answering my phone call yesterday inquiring about getting someone certified for respite care. A process which is not so easy. I found out recently that if we do not use our waiver money, then there is the chance we'll lose the waiver altogether, Medicaid card included. Without this, we'd be totally broke and in debt to our eyeballs.
However, using the money is not that simple. Lots of hoops to jump through.
At the same time, I am emailing and reading emails from four people on Will's school team to get his IEP to reflect the correct eligibility for services. More hoops. Waiting on the autism team to continue to hoop jumping process.
Also today I received a card from the school district's transportation office saying Will was going to be removed from the bus route due to inconsistent use. (We've started keeping him home every time he has a cruddy night of sleep.) Which meant I had to make another phone call to clear up the fact that yes, this is due to medical issues and yes, we still need the bus. Hello hoops. I'm jumping.
I'm awaiting a letter home from the school district to let me know that Will's dental form is out of date and he needs an appointment. Which I have not scheduled. Well, scheduled and cancelled due to illness. Not rescheduled.
I spent another 20 minutes on the phone with someone from his medical team figuring out what was going on with his sleep. (The result: Illness + mito dysfunction = stress on body which then = lack of sleep for Will currently)
All the while I mixed meds, fed kids, cleaned house....sort of, and found someone (thanks Grandma!) to come over so I can attend another child's Halloween Party.
'Cause, you know, I have other kids too.
So sometimes I wonder....do they know? Do they ever wonder why we look so tired? It isn't just meds and therapies (Darn it, I forgot to do his PROMPT exercises today!). It is all of the paperwork, phone calls, and hoop jumping I have to do.
Most of my days are like this...though admittedly less intense. Do they know? Those people....the people that make the rules....do they know what our days are like?
I doubt it.