So much to do…

July 7, 2010

I used to tell myself we didn’t really have it harder than other families. Everyone who has kids has to make appointments, run errands, arrange childcare, etc, I told myself. Since Chloe is our first child, I don’t have much basis for comparison, but as she gets older, I’m realizing that yes, our lives are definitely more complicated. In a Parent Advisory Council meeting once, another parent passed out a “to do list” of extra chores that special needs parents have, and I realized that I had to do most of the items on the list on a regular basis.

It’s summer, and we’re smack in the middle of family visits, vacation trips, and Jon’s busy schedule of summer teaching conferences and workshops. And the to do list goes on. Recently, when Jon’s brother and his family were visiting, I had to schedule time with them around Chloe’s hip x-ray appointment, a meeting with her therapist, a session with the orthodist, and an emergency phone call to the pediatrician when the side effects from her new medicine got serious. All this happened in a single week. The next week, we visited my mom in Portland, Oregon, and in addition to all the limitations that come with a wheelchair-laden vacation, I had to worry about stomach cramps caused by Chloe’s medication.

A friend of mine recently posted a link to “The Spoon Theory” on Facebook, and although I am neither ill nor disabled, I could totally relate. I often tell people I can only plan one big outing per day with Chloe, because I never know when a simple trip to Chuck E Cheese will leave us both exhausted and frustrated. I am constantly counting “spoons,” not because my energy is limited, but because taking care of Chloe demands reserves of strength and attention. If I have a glass of wine with dinner, will I have the energy to lift Chloe in and out of the bathtub? If I stay up late, will I be able to get up at 6 am and do her therapy? Is it worth it to eat out when the experience could involve difficult entryways, a crowded dining room, tiny bathrooms, and the threat of Chloe throwing a boredom-induced fit?

I suppose summertime always makes me a little edgy. While other people are heading to the beach (try that with Chloe’s chair!) or relaxing at the pool (still haven’t found a device that will allow Chloe to swim independently), I’m shedding spoons by the handful.


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