How was your summer?

It’s my least favorite question connected with back to school. It sometimes makes me feel like I failed when I have nothing dynamic to report. And if I were to reply with honest answers, I would overstay the expectation of the question asker who was undoubtedly just being very polite.

This summer was not one for the record books. It included just under 50 medical appointments for the three of us. I know this because the billing errors that will follow and take up hours in the months to come necessitate me keeping a careful record of these appointments in my calendar of choice.

The highlights included a bright green cast removal, an in-depth surgery in May, three colonoscopies and 2 endoscopies between us, and a pile of appointments for the busted nerves in this left foot of mine. All the necessary maintenance on the home, with two separate AC repairs, 3 car inspections, a windshield repair, and a new navigation system helped handle any free time that might have popped up. Rare disease x2 meets real life.

Meghan managed to begin the Patient Care Hours that she will need in order to apply to school for Physician Assistant studies in a few years. She also took a 7-week “Professional Development” course, voluntarily and on her own dime where she and Ella continued to enhance their team.

Beautiful Ella

My girl was able to wean off one medicine, switch another to “as needed,” and change a third to one that better suits her, all time-consuming accomplishments as well. And while she is not running yet, she is comfortably walking a fast-paced 5k with ease on the regular.

And while we never got “away” this summer, we got to Broadway, and made a trip to her favorite NYC Bakery.

How was your summer?

I guess that like so much else depends on how I choose to look at it.

Rereading my own writing above, I guess I could say “accomplished.” At least I know why I am tired.

Our disease is forever. Sometimes there are extra days to fit in things that are not related to it. Sometimes there are days to fly free, to shut off the phone and shut out the doctors. This year, not so much.

But amazing things happen inside my little house. When this house is busting at the seams with 3 humans and 3 medium-sized dogs, it is exploding with love. I did not clean a single window, closet or curtain this summer. My house, like me, survived. But somehow its foundation keeps getting stronger. We raised a human who loves us enough to know she can escape to our “bubble” and rest her wings before flying again. The gratitude for that alone, that she CAN fly, that she DOES fly, and that she knows she can come back here to rest SAFELY before she SOARS again; that gratitude carries me through the most exhausting times.

This summer was a battle for so many I know. And it continues to be a battle for so many for physical, mental, spiritual, financial, and emotional health, this year it seems more than in my recent memory. The prayer list gets longer and longer. And sometimes I wonder why. Other times I am sure my head will explode if I try to overthink it. I think the struggles of all, especially the medical struggles, permeate your soul when you live with a rare disease and spend the core of your life weaving in and out of medical obstacle courses. That one is hard to explain, except if you know, you know.

We moved Meghan back in yesterday. Second year of college and time keeps marching on. This world is such a crazy place. Life is just utterly unpredictable.

How was your summer?

Move-in Day 2022
My Whole World
Three Furry Siblings

Maybe I will just flash a few photos and smile. No matter how exhausting and lonely this journey is, I somehow think we end up ahead. We three have a connection beyond words.

Hug your people. Be mindful of what you say. Laugh often. Love much. And then, laugh again.


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