Back-to-school Madness.

I am a morning person yet I hate mornings.


Today like many across the country our family returned to school. You’d think with only one child in his final year of high school that mornings would be fairly straight forward.  These days we are a family of adults, after all.  But yet this morning by about 7am I was ready to throw the towel in on the day and try again tomorrow.


The first contributor to our morning chaos is the fact that we have shifted our shared-care arrangement for Matthew.  In the past he, ostensibly, spent his weeks at the group home and alternating weekends at home with us.  While in theory this sounded wonderful it actually created a plethora of problems.  Organizing intermittent weekend care proved challenging.  I had many fantasies about mom and Matthew outings on weekends that he was often too tired to enjoy.  As a result I often spent time on my weekends at home unable to enjoy either family, or Matthew-driven, activities.   Since Matthew’s  many mid-week activities are organized in our neck of the woods he spent most weeknights at home.  As a result our evening caregiver was often running him back to his group home only to sleep.  It created a very fragmented care schedule that often led to communication breakdown that at times compromised Matthew’s care.   By the spring we had decided to shift our arrangement and as of today Matthew will spend weekdays at home and weekends at his group home.  Officially he has a full-time bed at the Lodge, and I expect someday he will actually occupy it full-time, but for the moment we just aren’t there yet and this strategy remains the best option for all of us.


These days I am only officially responsible for Matthew’s overnight care, and since he no longer requires nighttime tube feedings this task shouldn’t be too onerous.  The rest of his weekdays involve a finely tuned rotation of nursing, day program, and evening activities/support, and all this care allows me to have relatively uncluttered days to pursue my own interests.  To be sure this is a rare gift for parents responsible for complex care children of any age and something I do not take for granted.


So this morning should have been seamless.  It wasn’t.  I suppose it all started when I got out of the shower only to realize my 17-year old son had seconded my blow-dryer for his back-to-school morning preparations. He is a senior after all.   If you see me today that is why my hair is a right, hot mess.  And then the nurse walked through the doors at 7am and the dogs, having seemingly forgotten that we have nurses regularly, decided to announce to most of Waterloo that we had a visitor.  This might have been fine if my son and husband hadn’t started yelling at the dogs to quiet down, thus drowning out the dogs with their own voices.  The cacophony was impressive and was enough to make my inner introvert long for my now-empty summer cottage.  And then the nurse ran into the kitchen to let me know that the group home hadn’t sent home all of Matthew’s medications and in fact we were missing the most important one.  CRAP.  This conversation happened, of course, while my husband was trying to get my attention to talk about car-pooling kids to and from school today.  I could keep going, but you get the idea.


The upshot of all this is that while I no longer change Matthew diapers (while I actually I do – multiple times last night – bratty kid =)), or provide most of his direct care, I am still the chief decision maker and advocate for my now adult, complex care child.  My job description is clearly changing, but as Matthew’s mom I still have a fairly demanding job.

And I still hate mornings.


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