Remembering 2019

Two updates in two days is a little much, but I am nothing if not extra.

Lu and I visited her pediatrician for a follow-up/check-in yesterday, and SHOUT OUT TO DR. ANDY. Per his official recommendation, under doctor’s orders, we have canceled all of our specialist appointments for the next month or so, with the exception of her eye surgery (9/26) and related preparation. We have removed one of her medications from the daily routine and do not plan to embark on a physical therapy journey.


His observation (and, for what it’s worth, a concurring thought with Second Neurosurgeon) is that we have done as much as we can for the moment. Spinning our wheels and chasing answers we are not getting is taking an emotional toll and isn’t worth it. It is possible a break from the stress will alleviate her symptoms. It will *certainly* offer ME some space to breathe.

Lu is 7. She is not an infant – she has a certain amount of bodily autonomy and independence. She is going into second grade – she will remember this time as an adult, and she is *miserable* at some of these appointments. It is torturous. Cole is 9 – almost 10! – he will also have memories of this period.

I worry about how they will look back on it. Cole came along with us to one of Lu’s appointments a few months ago; I had to pick up Lu early from school and no one would be home to get him off the bus. We had a snack on the way to the doctor and they both kept themselves entertained in the waiting room until Lu was called back. We wrapped up our visit, scheduled the follow-ups and headed for the car, where I called my mother to recap. Lu turned to Cole and remarked, “here is where Mom calls Grammy Boo and cries.”

THIS was the routine we had fallen into. Pull her out of school, go to some doctor or other, and call my mother/my husband/my friends to review and inevitably break down over the concern from these mystery symptoms and a lack of any kind of progress. Lather, rinse, repeat. Multiple times a week! For months!

In 20 years, when they are adults, will Lu have an aversion to seeking medical help? Will she associate it with anxiety and my mental break down? Will Cole remember that he was pretty much on the back burner because I did not have the bandwidth to focus on everybody’s needs? Will they think i did enough? Too much?

We are not completely through this journey, so a certain amount will likely rely on how the rest of it plays out. But I hope they see that I am trying as hard as I can with everything I have. I hope they do not interpret this break as a failure or as giving up. I can only make the decisions I think are right for our family within this moment and hope for the best…

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