I hate that I’m writing this…I also hate that I haven’t written in years. A huge part of her journey has been left unwritten. The part everyone waited for, the “normalcy” we all rooted for for months was achieved. She’s been healthy, she’s been happy, she’s been everything we could ever have hoped for and more. Trust me.
How we got back here was sort of sudden…what seemed like a run of the mill winter bug has turned into something that has yet to be explained. Did a virus do this to her? Is her body doing this to itself? These are just 2 of the main questions we are seeking answers for and while I know many long for the details out of sheer concern I’m simply not ready to write it all out. Writing is a form of therapy for me and for now I’m gunna stick safely in denial land…not denial that we’re here (trust me I’m very freakin aware of where I am) just…I don’t know, never mind I don’t need to explain myself 🙂
Hospital life take two? There are few things in this place that seem real. That hasn’t changed. It still all feels bigger than us and I remember last time multiple times a day squeezing my eyes so tightly hoping that upon opening them it would have all been a dream. Thing is…I know this time it’s not. My eyes now know to focus…to not squint because I might miss something. They’re trained. I’m trained. The doctors have referred to us as “Varsity Hospital Parents”…not a title we ever thought to strive for but one that I’m humbled to carry. We aren’t rookies and Rileys no amateur … for that I equally feel heartache and gratitude. I’m split open that Riley is here again…that this time it’s worse…that this time she’ll remember it…that this time her strength isn’t just natural but a skill that she’s daily honing in on. I’m grateful that we’re better prepared as parents to support her through this because we’ve learned how to better support ourselves. I’ve learned to shut my eyes the second they leave the room because that 5 minute absence must be utilized for sleep. I’ve learned that pacing the waiting room during procedures doesn’t make them go by quicker but a hot shower or a few steps outdoors does.
It feels against nature to not just stew, to not ache and worry and spin…but turns out all of this goes against nature so unless I modify my prospective I’m doomed to fail…or maybe just flail. Neither is an option. As her mom I want to take her pain but I can’t…I can only manage mine so that burden isn’t transferred to her. As a baby in the hospital I knew she could sense fear and angst in me so I quieted that. As a little girl she’s now scared herself and I don’t get to quiet that for her. Now when comforting her I can’t just soothe…I have to teach her to find comfort in the unknown, in the painful, in the noise. I’m re-training myself to not instinctively hold her tight and whisper “shh shh shh” when she whimpers but to look her intently in the eyes and say “I. Hear. You.”
Whatever this illness is it has taken her ability to move her body, to speak her words, to sustain through eating, to breath easy and so much more but it has not touched her awareness. Those symptoms and debilitations will be temporary…she will fight this, regain and relearn those basic functions through time and support. Her awareness is permanent. In watching her body fail her I’ve seen her understanding sharpen. She has used every last bit of breath to tell the nurses during agonizing attempts to find veins in her swollen limbs “I can do that myself…please I promise…just let me try”. Hell she probably could. She’s paying attention. She’s not missing a thing. And while I wish she was I have to remind myself that though she looks weak she is stronger than anyone I will ever know.
I didn’t think it possible that I could love this little person anymore than I already did but everyday that we are here…with every alarm, with every scare, with every struggle… I do. This very moment I’m staring at her labored breathing within the walls of our PICU room and all I know for sure is that tomorrow I will love her even more.
Its awful…all of it…really. Like no shit. But truthfully…what better gift than the opportunity to love deeper?
You all remember the drill…you’re Varsity Riley Supporters. Whatever it is you believe in…prayer, positivity, good vibes, skittles…send it to our girl. Go Riley Go.