As the parent of a sick child a simple fever spike means a whole pile of “what ifs” dumped on you as a midnight snack by a team of doctors spouting off lingo that after 5 months you still don’t understand. They retreat to run their cultures and then you just get to go ahead and digest all that alone, in a tiny room with your screaming baby. Rude. The whole concept of hospital isolation and having to function under such high stress levels for prolonged periods is just plain rude. Caring for a baby with a fever flat out sucks if they’re otherwise healthy but when they’re immune compromised and complex as all get out internally watching that manifest externally is excruciating. Every second hoping that cry means “hey mom this whole temperature regulation while cutting teeth thing is a bitch” but listening so intently to every wail because maybe just maybe it means something else…something that as mom your built to fear but trained to detect. You don’t get to be scared mom because in that moment you have to be supermom. Alone. There’s no reward for finally getting that hysterical baby calm other than silence but there damn well should be. What you do in that room so often goes unrecognized, thank god your child will never remember the pain but you will, oh. you. will.
Those days for me are looking as though they’re behind us but that not so distant memory of the sheer terror is still so clear. Yesterday Kate, my fellow SCID mom, partner in crime and dearest friend had one of “those” days. In texting with her in the morning I could feel just how spent she was, I’ve been in that same place emotionally and it’s not a good space to be. You have to be all in for your baby but you’re running on no sleep and that strong front you’ve been putting up is wearing thin. It hurts, mentally, physically, emotionally…it is a pain I don’t think I’ll ever be able to put into words. Chris could see on my face how I longed to be there for her and quickly said “Babe I’ve got the girls if you want to go be with Kate.” I did, I had to be there for her. More than anyone I knew what she needed because just a few months ago I needed it too. A break. An opportunity to just breathe. Another set of hands. Within the hour I was on my way, I stopped to stock up on the essentials…her go-to snacks, veggies and of course beer (nevermind the hour). I didn’t tell her I was coming because well Kate’s a stubborn country girl who would have insisted she was “just fine and didn’t need me to come”…ahem, cough, cough, I call bullshit.
The look on her face as I tapped on the door was again like looking in an emotional mirror. She cried, I cried, we hugged as though we’d been apart for years when really it’s only been 2 weeks. There are no secrets between us as to how much we have needed each other during these past months. I can’t even count the days that her presence down the hall, her friendly face popping in to check on me and our wine nights have saved me. Literally, she saved me. Over and over. We’ve been by each other’s sides in this SCID war since the beginning and yesterday we got through another battle as it should be…together.
Being back in the hospital was surreal. So many staff members lit up when they saw me and then the smile immediately melted into a fearful scowl as they wondered why I was there. Was Riley ok? I quickly assured them that she was just fine…at home playing “normal” with Dad and sister bear. My reasoning for being there surprised no one…as I said our bond is no secret. From doing each others laundry to having beer delivered to the front desk on New Years Eve the duo of “Kate & Alissa” has lightened the mood in those halls many a times. Riley’s time in 7 Long is over but until little Elsie rings that bell mine is not. Please take the time to direct a whole butt load of positivity, healing energy and prayers to little Elise Brooks and her rockstar of a Mom, Kate.
To read more about her journey please visit http://www.caringbridge.org/visit/elsiebrooks.
To donate visit http://www.gofundme.com/ElsieB