It's the double-edged sword, of course -- hooray for no future, looming health problems (God willing), but we still don't know what caused her stroke.
I'm okay with that. Will's okay with that. We're calling it a fluke.
We had a good week of therapy - Grace has therapy five times a week. Tuesday morning, outpatient OT. Tuesday afternoon, in-home (through the state) OT. Wednesday morning, in-home PT. Thursday early morning, in-home SLP. Thursday late morning, in-home PT. I teach U.S. history in the afternoons for an online classical school.
For a person who isn't exactly disciplined, this schedule has created a kind of pattern for Grace and myself. It definitely helps me prioritize my time, which I appreciate. The bigger bummer is that I can never calculate Will into our day; his schedule changes too often. I'll be glad to be out of his MICU rotation (14-16 hours gone/ day x 6 days/week) and back in the ER next month, where he sees us way more (usually gone about 11-13 hours/day x 6 days/week).
A typical day:
- Morning: breakfast, play time (or therapy), nap (hopefully!)
- Afternoon: babysitter arrives for lunch; I prep + teach class; babysitter goes home :: therapy on Tuesdays - always nap time in afternoon.
- Evening: I prep dinner, we eat, we play; put Grace to bed.
|Her latest feat!|
Children with special needs do not have "special" schedules - just more activities (e.g. therapy). What they really benefit from are involved parents. This can be tough with working parents; I'm of the opinion, however, that it is the quality of time, and not just the quantity. Will is not home as much as I am, but he is very hands-on and interactive with Grace. It's rewarding watching the way they both interact with each other, and truly love each other.
When I was pregnant with Grace, I kept telling Will that the most important thing for me is for Grace to know she is loved. To know you are loved is a kind of trust no words can express. When we are in therapy and Grace is tired or doesn't want to do an activity, I'm there to coax her and love her and encourage her.
Every parent must travel this road. Every parent will be faced with challenges and the want to give more, even when exhaustion reigns supreme. With Will gone long hours, I usually side with an easy dinner, not immediately cleaning up (my default), or playing instead of getting ahead on writing or grading.
I have this time with Grace and I like to spend it happy, not stressed. Blessed.