Things done and undone

July 29, 2015

to do list (800x450)

Special needs parents always carry a burden–the things left undone. There are always more therapies, therapists, exercises, specialists, drugs, vitamins and research that we could take on. Early on, I realized that the best thing I could do for myself and my child was to say “no.” We both have very little patience–if something doesn’t work quickly and easily, we abandon it.

We’ve neglected exercises, canceled appointments with therapists, walked away from whole categories of specialists and thrown away medications when the benefits failed to outweigh the time, effort and side effects. I don’t feel regret over any of these things–my biggest priority is that Chloe have a happy life, and she can’t do that when she’s swept away be a stream of appointments and medication.

But there is always the list. The list of things I wish I did, or wish I did better. As a mother, as an employee, as a citizen, as a person. The list feels especially heavy today, so I’m dumping it here, in no particular order:

Things I haven’t done:

1. Brushed Chloe’s teeth today

2. Written enough thank you notes and birthday cards

3. Renewed the registration on my car

4. Figured out the best way for Chloe to use her expensive iPad/bluetooth switch combination

5. Written (until now!)

6. Managed to work from home today, as I nursed Chloe through a stomach virus

7. Had one of my photos go viral on Instagram

8. Found a way to make sure Chloe does not spend the last two weeks of summer parked in front of the TV.

9. Organized more play date with Chloe’s friends (and she has quite a few, of all ages, who probably wish they had gotten to see her more this summer.)

10. Exercised regularly

11. Cleaned the oven

12.Gotten all that paperwork from the doctor that I promised I would get about 2 months ago.

But to balance things out, here are some things I have done:

1. I wrote a blog post today

2. I managed to find a job I love, that has enough flexibility that I can stay home with a sick kid all day at the last minute if I need to.

3. Done (roughly) an hour of therapy a day with Chloe, and watched her improve her ability to control her head, hands and voice, presumably because of this therapy

4. Came up with a recipe for homemade tube feeding food, and tweaked it according to Chloe’s needs.

5. Organized a yearly tour of local breweries, which is pretty much the only big social event of my life.

6. Found an amazing guy

7. Introduced Chloe to her new favorite TV shows: Doctor Who, Buffy the Vampire and Futurama (the guy gets credit for that one)

8. Found a way that Chloe can say “yes” and “no” and continued to improve upon it.

9. Painted the living room and hallway in my house and didn’t leave a whole lot of the trim unpainted.

10. Laughed, a lot

11. Listened to music

12. Thought, at least once a week, well at the very least, twice a month “I have a good life.”

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2 Responses to “Things done and undone”

  1. Donna Medders Says:

    I’ve missed your blog! This was a good re-entry.

  2. Barbara Jaquish Says:

    Thanks, Camille! That’s a lot of stuff, done and undone. Please just cross off that “clean the oven.” Not worth bothering about.


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