Each day the doctors are coming in throwing that “discharge” word around with Texas sized smiles plastered on their faces…their mannerisms, tones and expressions are all so different then they were just a few short weeks ago. It’s like they can relax around me more…its no longer a “we’ll do everything we can to save her” vibe but an “oh my gosh we SAVED her.” It really is a fascinating process to be a part of. I have been playing the role of supporting Mom day in and day out, just hanging here in the balance making sure that every moment I spend is supporting the hell out of this little baby and now that we’re so close to the end of this phase of our SCID journey I feel even my shoulders let down a little. We came into this hospital on the wrong side of the odds…1 in over 100,000 and we were the “one”. Statistics like that sure have a lot more meaning when you are the “one.” I will never look at any sort of numbers like that the same again…I have more in common now with the 1 than the humongous number that generally follows. I can relate. I can identify. I can feel that terror. But here’s the thing…we are going to walk out of here on the right side of the odds. Because of the newborn screen Riley was given hope, because of the advancements in medicine she was given comfort and because of the support of her doctors, nurses, parents, friends, family and strangers she has been given a chance at life. A real chance, at chance at normal, at chance to one day be able to roll around in the dirt. Damn, thats amazing.
I cannot believe we are so close. Here comes the “oh shit, oh shit” mantra ringing in my ears once again. I am so excited to go home, to take her home, to watch her and Presley get to know each other all over again and to feel what its like to be a family for real this time. But I am so nervous. Just like I was nervous before I had her about how life would be with 2 kids, about how things would change, how we would adapt. We are right back there…for me this is what having two children has been like…this life…this crazy back and forth, 4 days here 3 days there, hospital/home life is normal. Our “new normal” that I have always spoken of has become our normal, now we are going to have a “new new normal” to figure out. It is scary heading in that direction, the direction of the door…I feel safe here. Even when I have been delivered bad news, she’s been in pain or she’s spiked a fever we’ve had that comfort of being IN the hospital surrounded by trained professionals who know what they are doing and that sure does take the pressure off me a bit. When we take her home it’s all on us and that comfort zone that is the hospital will be an hour and a half away. Hmm. Ughh. Scary. Ok ok…pull it in, deep breath. Just as I have here I have to remind myself to take the fear out of this, being “scared” is helping no one…it’s sure as hell not making me feel any better (screams the accrobats doing flips in my stomach). This journey, her life is what it is. On good days, bad days, days where it’s obvious she’s sick and days when it’s clear that she is a pure miracle…it all is what it is. Home will be amazing, I will do my best to check my fear at the front door as I step in and carry only the best thoughts and intentions inside. Whether she is happy, sad, showering me with vomit or giggles she is amazing.
Last week my “so much to do” epiphany which struck me in the middle of a post led to me compiling a series of lists…to-do, to-get, to-buy to-schedule, to-clean, to-throw away….insert large explosion sound affect here…yup, that would be my brain combusting. Needing this much stuff is so foreign to me. None of this comes natural. For a few reasons…a.) I am NOT a stuff person…anyone that knows me knows that, I don’t like stuff…ask Chris-he always complains I’m impossible, every Christmas and birthday he hounds me to tell him what I want and my response is always “I don’t need anything.” b.) I’ve never been a germaphobe…Presley can make a nasty mud pie in the backyard, she generally has a bit of snot somewhere on her face (she is 3 and all) and runs wildly barefoot all over the compound…my motto has always been…hey whatever, wash your hands before you eat and get hosed down something fierce in the shower at the end of each day and call it good. That little diddy just isn’t going to work for Riley Jane. Shit.
Eveyone has been so wonderful offering help and support in so many different ways, I couldn’t be more grateful. After so many suggesting that I register for things that we needed I gave in…I created an Amazon Wish List which really helped me to consolidate my many many lists. Someone who follows the blog emailed me recommending it because you can add things from any website, that totally helped as some of the things we need are baby items while other are cleaning or medical supplies. So be prepared…many of the items aren’t the standard “baby registry” finds…it’s a lot of household, cleaning, storage and other boring stuff but hey at least now I have everything in one place so I’m not so scattered. Maybe Oprah will stumble across it and do a “Riley’s favorite things” episode haha…I can picture her now shouting and pointing away…”YOU GET BLEACH WIPES, YOU GET A VACCUM, EVERYBODY GETS HAAAAAND SANNNITIIIIZER!!!” Ok ok, back from that day dream….I told you my brain is fried I wish everything Riley needed could come from some big box baby superstore but turns out they don’t carry the antimicrobial bacti-stat soap that we use here in the hospital…shucks. I did also register at Target because I know that may just be easier for some people…if you’re anything like me Target is a destination frequented weekly. I am feeling a bit less overwhelmed now that I at least have a visual of what we need and an easy place to add things as the doctors drop more “oh and you have to do this too…” type things on me. Everything is adding up so quickly and every bit that anyone has offered to help or take care of for us is appreciated more than you will ever know.
Thank you all again, really truly for everything. For following, for sending such supportive words our way, for donating, for being the biggest cheerleaders Riley could have ever hoped for. We are so close. Go Riley Go! xoxo
For those who would like to donate or help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com
Amazon Wish List:
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