I felt a familiar dread on Sunday night. It was going to be one of those weeks. The appointments have snuck up on me. She has 4 extra appointments outside the usual 3, plus school. Not to mention the trip to Salt Lake City (for Shriners and some fun), work, basketball games, haircuts…
I’m worried about Keira. She has some symptoms that have taken me on what Seems to be a wild goose chase. A whole lot of tests for what I’m guessing will be the MD’s equivalent of a shrug (They use a lot more words.).
Jeff might be worried, too. After all, last night he dreamed Keira was a refrigerator.
Flipping lazily through my phone Sunday night, I came upon this t-shirt. Jeff and I both laughed.
In preparation for a talk I plan to give on anticipatory grief and coping for families like ours, I’ve recently discovered that the particular grief of parents with medically fragile children has not been well studied. Experts on PTSD, however, have shed some light on these families by comparing them to soldiers in combat. The “trauma”, or at the very least, the intense anxiety that these parents feel on an ongoing basis serves the purpose of keeping them alert and ready for the next inevitable, albeit unpredictable crisis. For soldiers, and in many ways parents, the hypervigilance, sleeplessness, planning, and advocating (fighting), is a fact of life. For soldiers, standard treatment for anxiety is often contraindicated. Their state of being comes at a high cost to their emotional and physical health, but it helps ensure the safety of those around them. I’m not a soldier. Or a superhero. Just a mom trying to get through. And so it continues.
I drew this today. When I get into these moods, I often wonder if I could organize and galvanize my thoughts by illustrating the issues in picture form. This one makes more sense than most I’ve tried before. It shows what I’ve been managing for K during the past week. When I finished drawing all the connecting lines, I handed it to Jeff and said, “This is my tight shipwreck.”
As usual, Keira is ok. Today she correctly identified the requested color two out of two times, ate a piece of cheese the size of my little finger, got poked for her baclofen pump refill with nary a flinch, and smiled at a baby in the elevator. All the while worrying me with her increasingly glassy stare, flushed cheeks, and stuffy nose.