My daughter had her second resection on March 3. I have a lot of complicated feelings that I am parsing through, but to keep things simple, she is ok for now. Recovery has been similar as the last time, though her cognition hasn't been affected. Instead, she is more unstable walking and has some coordination deficiencies on her left side, but we are working through it. She has a walker that she used in the hospital and yesterday around the house. Today we encouraged her to try getting around without it, and she is doing ok. Moving slower, but not falling. This time the incision was through the back left-side of her skull and the base of her neck, so she has more muscle pain and neck stiffness as she's healing. Again, we are working through it and making progress little by little.
All of us are grappling with our feelings in a different way. My daughter is on dexamethasone, a pretty potent steroid, to help with swelling. She was on it last spring too. It makes her very emotional. On the way home from the hospital, she started crying about our dog that died a year and a half ago. She also has big feelings about losing her hair (which I dyed purple on the ends to help her feel better), being in pain, and missing out on things at school.
My younger daughter has been extra clingy with me. I was up way too late last night catching up on my Bravo shows, and she came out around midnight wanting to cuddle and sleep with me. She climbs on me at the dinner table and wants me to carry her around constantly.
My husband and I vacillate between snipping, crying, and forgiving. We do ok I think with giving each other space for our anxiety-induced idiosyncrasies and balancing the load of caregiving. We alternated nights at the hospital and coming home and playing Barbies with our youngest. He makes spreadsheets to track medications, takes tons of notes during appointments, and goes to pick up food, prescriptions, and whatever else we need. I research, keep track of the schedule, communicate with teachers, social workers, and doctor's offices, and try to calm everyone down when they are getting too emotional.
I've been trying to be present during the sweeter times together, but it's all kind of tinged with sadness. The girls sent silly videos to each other while the oldest was in the hospital. It's always cute to hear them laughing together, but also a bit heart breaking not knowing how long it's going to last.
Last night we were on the deck watching the sunset. We put on a playlist that my daughter's Girl Scout troop made for her, and she proceeded to scream/sing "This Girl is on Fire" at the top of her lungs, and I struggled to keep it together. We then had a mini dance party on the deck. One kid swaying around like a ballet dancer and the other holding on to her walker and shaking her butt.
I'm sure we all need therapy, but with what time? We have 3 appointments in the next two weeks, and then it's daily radiation again until April 17. We're just going to have to get by haphazardly with forgiveness, music, and sunsets on the deck for now.
A Deck Dance Party Song
Megan Trainor, "Better When I'm Dancin'"
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