Outside of dealing with my 8 year old child about to undergo brain surgery, the biggest stressor for me was telling other people about it.
Here's the situation: we were in a small hospital room - bed, couch, bathroom, desk and chair. Outwardly, my husband and I were trying to talk to doctors, keep our kid calm and entertained, and take care of ourselves (eating, drinking, bathrooming). We were also trying to take in a lot of information about pediatric brain tumors and the effects of craniotomies on children. (Children can have strokes, memory problems, or physical impairments that last for days or even months.) On top of that, we had people constantly texting for updates and information that we just weren't ready to give or talk about. Each time I tried to articulate what was happening, even over text, I started crying. And I really didn't want to lose it in front of my kid. Tears, fine. Full on sobbing? Not fine.
Honestly, the biggest help were the people who passed information along for us without even consulting us. I wanted people who care about us to know. I just couldn't do it myself.
And the questions and messages of concern weren't just coming from family and friends. They were also from coworkers, teachers, neighbors, people we aren't close with, but who we had to tell for practical, logistical reasons.
While waiting for the sedated spine MRI to be done, I got a call from her school. The person on the phone was expressing concern and support. All greatly appreciated. But then they started crying. And then I was in the position of comforting them, me whose daughter had a brain tumor. It felt absurd. I decided to stop answering my phone.
Then, we got the results from her spine MRI. They found spots, but they weren't (and still aren't) sure what they are.
Google leptomeningeal disease. Poor prognosis. 4-6 months with treatment. Cry. Realize it's results for adults, so add pediatric to the search. Poor prognosis. Survival measured in months. Cry.
We decided not to tell anyone that part yet.
A song to listen to while getting an MRI
Lindsey Stirling, "Surrender"
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