“I just can’t get comfortable.” It’s a simple enough statement…but for her…for her it means pain. That was her first phrase in the hospital that gave us true insight to her discomfort, a phrase she’d never said before that allowed us in. She experienced so many different levels of hurt, discomfort, agony and angst…the tests, the procedures, the constant influx of masked strangers poking and prodding of her poor little body. There was screaming, there was crying, there was excruciating silence when she was clearly too weak to fight. Then there was begging and pleading when she regained some of her strength and yet amongst all of those audible emotions and deflections, all of the things that came from her vocally during treatments and trials…the only one we could ever know to truly mean she was in real pain…not fear…not frustration but just…pain…PAIN was spoken as…”I just can’t get comfortable.”
The doctors are relying on basically 3 things in medical mystery situations such as hers…symptoms, test results and the parents. For Riley the meaning behind her symptoms and results eluded them on a million different levels so the form of reference that was often most reliable was US. Finding those cues is agonizing. Weeding through it all, trying to translate a toddlers emotions and physical state during such trauma is just…gahhhhhhhh. It’s awful. It’s agonizing. It’s full blown adulting when you want to kick and scream yourself. But when those 5 words would escape her lips it was clear…she was in pain. The team trusted our guidance because their tools often left them still pondering. Sigh. No pressure.
“I just can’t get comfortable”. Once she gave me that cue wading through her waves of emotions that ebbed and flowed like a tide became more predictable. She is smart. I know that. She was also scared…time and time again…terrified…but never pulled that card when it wasn’t meant to be played. She’s too smart for that. Some of the things we had to do to her all in search for answers were just so taxing…physically, emotionally. And I’m referencing me…I will not even pretend to speak on her behalf. But as a child she was always able to come right back to the present. Her resilience…amazing. Her ability to express exactly how things feel in the moment without fear of the future or a reliance on past experience is uncanny. I take back what I said…we as parents were not the doctors most reliable reference…she was. We were simply the messengers.
As the days pass now that we are at home we have moved from frantic and frazzled to a convoluted version of “settling in”. She is home. But the fears I felt in my last entry are still guiding the majority of my days. Thanks to the container store and a cleared corner in our kitchen I have her medications organized and essentially serve up tube fed appetizers at meal times courtesy of Pharmacist Mom. 15 medications…some in powder form that have to be mixed, some in pill form that have to be crushed and then mixed, some in suspension form that must be refrigerated, some that must be mixed and administered for 10 days and then discarded, some that are good until the bottle is empty, some over the counter, some to protect the stomach, some that advise things such as “wear gloves while administering chemotherapy” and some to simply make her shit. So many meds. Such a small person. I hate them. And I live for them. And she lives because of them.
Our days teeter on normalcy but are lined with moments that remind us they’re nothing but. Conversations during breakfast and Sofia the First reruns such as this now happen…
”Mommy does Sofia have to take as many meds like me”
“No baby…she doesn’t”
“That’s not fair.” deep exhale.
“I know baby…but you know what?…we are so lucky that we have all these meds to help you, sometimes people get really sick and there isn’t medicine to help.”
“Hmmmm…ok Mommy. Guess What?”
“I’m stillllll HUNNNNGRRRRYYYYYYY”
In one minute flat I go from keeper of the cartoon, to recovering from a punch of gut wrenching reality, to spouting off a watered down attempt of explanation and then right back to line cook. Piss off Sofia.
It is all just nonstop. Watching her, caring for her and being home with her is the most rewarding and most trying thing I have ever done. She is here and I’m still so grateful for the simple fact of that reality. There are long stretches of the day that I’m too wrapped up in her existence to be held back by what she’s lost. I’m still celebrating her breath that it takes mine away when she begins to progress in other areas. I root her on as she takes steps…encouraging her strength while burying my fears. I help her onto the potty celebrating her that she made it while having an inner dialogue with myself that goes something like this…”good lord this kid is so heavy, I think letting her wet herself is easier…but we really can’t afford these damn diapers…what the hell…HOW is this our reality?…we were done with diapers…we didn’t have another baby…how is our child disabled?…shut up Alissa she is not disabled she’s a fucking superhero…yeah a superhero in a wheelchair…god she’s so good at wheeling herself around though, how is that possible…she’s amazing, she’s breathing”-—MOMMMMM I’m DONE…dialogue interrupted…I help her get down, balance her while I wipe her ass and carry about our day.
Meds. Playdoh. Food. Steps. Painting. Potty. Walls…the invisible kind…she hits them. Food. Steps. Wheel chair races. Play. Meds. Food. Potty. Walls…the invisible kind. Food. Food. Food. Playdoh. Painting. Play. Steps. Wheel chair races. Food. Food. And today…the 4:30 invisible wall…hit…hard.
“I can’t get comfortable”
Damnit. Meds. Pain meds. Bed.
“Mommy…can you make sure I don’t walk as much tomorrow…I think I just trying to do too much”
Sigh. “Ok baby”
Once again…she’s guiding me. Progress. Pain. Progress. Pain. Her life. Our life. Progress. Pain.