Right on time.

It’s here. The “post crisis/post admission” aftermath…right on time. It always shows up. I crush the game in crisis…in the hospital I am good. It’s almost superhuman. I can function on no sleep, I am the damn positivity “we’ve got this” queen. And then…something happens. Something good. We get good news…or no news which in this world I consider good. Or we go home. Or she gets better. And it’s good. It’s all I’ve wanted. But then it happens. That superhuman I was…that girl leaves. Or actually she stays…that version of me stays in the hospital and my mortal/broken/traumatized shell of a self trudges back into the world KNOWING that when I wake up the next day it will all come crashing down around me. For years I didn’t understand it…I didn’t really talk about it, I acted like it wasn’t there, I internalized it. I thought I was weak. I thought there was something “wrong” with the way my emotions functioned. How could I be ok seeing her body riddled in cords but be so NOT ok once said cords were no longer needed? How am I ok when she is not and then wrecked when she is? What. The. Actual. {insert expletive here}.

I know now that there is nothing wrong with me, that I am in fact not weak or crazy. Knowing that however does not change the course of events that will play out for this process of mine. However it does change how I will react to it. I went to bed last night knowing when I woke up my entire body would hurt. I mean, hurt. It did. It does. It will for the next 2-3 days. Food will be hard for me, tears will be constantly trying to fall, anxiety will be at all time highs, self-judgement will consume me, simple requests like “Mommy want to play?” will feel painstakingly impossible to fulfill. Instead of fighting it I’m learning to lean in. To listen to my body and mind and attempt to care for it the way I do my children. To not fight the tears, they’re falling now…running down my fingers and onto the keys as I type. To not force myself to feel any way other than I do in each moment. I am breathing in my own advice on the inhale…”it’s ok…” on the exhale “to not be ok.” This PTSD of mine…it deserves respect. This broken girl that I am waits her turn…every damn time. She keeps quiet so Riley can be heard. I have to stop telling her that she is not welcome. I have to stop treating her like she is wrong. This pain, this process…it’s valid…so very valid and necessary and in about 5-7 business days I know will see it as beautiful.

Riley is home today due to a virus outbreak at her school that her team has no interest in her being a part of. She is sleeping now, giving her body the rest it’s due. As for me, like I said…I’m leaning in…a few moments ago that looked like writing and crying…now it looks like crawling right back in bed with her. Alright broken girl, I hear you…let’s rest.

Baby Riley pc: Meg Perotti : Photographer : Little Meg

Goodbye Room 735!!!

We’re moving rooms!!! Those exclamation points are for excitement not frustration by the way 😉 Excited about moving rooms?…what’s exciting you ask?…well let me tell you. Riley has counts therefore no longer requires the severe isolation back here in the pediatric BMT unit…we will still be isolated to a room but it will be in the hallway of 7 Long…we are only moving about 6 rooms down, nothing too extreme buuuuuut the room we are currently in will be welcoming little Elise as she starts on the next phase of her SCID journey. Kate (Elsie’s mom) whom I have talked about several times but here’s a quick refresher…she got the same damn phone call that landed us in this joint just 3 weeks after us, her and her husband have a 3 year old daughter as well and she has been my faithful friend, drinking buddy, shoulder to curse on (because I’m not much of a crier) from the moment we met.I remember promising her months ago during her first days in the PCRC that it would get easier, that it would get better and that I’d be here for her every step of the way. She didn’t believe me then but chose to trust me anyway and within a few weeks she was settled in to hospital life, gettin her yoga on at gym across the street as I suggested and being an absolute rockstar Mom to both girls despite the distance in between. The bond we have developed is something that no two other individuals will ever understand…we are living such similar journeys, sharing in this nightmare together but taking great measures to turn so many of the moments spent here into happy ones. We have laughed, cried, drank, gossiped and held each other up when the other knew we wanted to fall apart. I’ve said it a million times and I will forever feel this way…in no way would I have wished this on either of us but I am so thankful that we are at least going through it together. Even her family and friends have been amazingly supportive of us…you’ll remember her friend Shannon who gave me the huge gift bag of booze and carbs (yeah buddy) and other friends and family members of hers have reached out with kind words and donations including her parents. Seriously…Kate has got some good people surrounding her and I’m lucky to be in that mix.

Elsie will be starting her chemotherapy on Saturday with bone marrow transplant to follow I believe on the 14th (sorry if I’m off Kate). The fact that she will be going through all of this in the same room Riley did just feels like good juju (or something like that) to me. Riley has done so well tolerating all of the ups and downs of this process and I hope only the same for Elsie. It’s a really surreal place to be in with Kate…looking at her is like looking into a mirror image of my past self…everything that she is going through I literally JUST went through (there are a few small differences in treatment but generally speaking) and for her looking at me is a glimpse of what’s to come. The other day when Elsie got her broviac line placed seeing the look on Kate’s face right before they came to pick them up for the surgery almost brought me to my knees, the fear in her eyes was the same exact fear I had felt. It is so surreal to witness someone experiencing the emotions that you yourself just felt weeks earlier. I think thats when it hits me how hard this all really has been on me. Elsie is an amazing little girl and Kate is one helluva woman and they will get through everything that will be thrown at them in the next two weeks just as we did.

little Elise Ann
little Elise Ann

So to you Kate…Riley and I are filling this room up with all the good vibes we can squeeze in before our asses get kicked to the hall. I will be here for you every step of the way. The offer of “lets switch kids for a day” that I extended to you the other day when Elsie was NPO and unhappy about it extends throughout her chemo and transplant, day or night you need a break come find me in room 722 lady and we’ll confuse the shit out of the nurses by switchin’ beds 😉 You will be on the other side of this before you know it and let me tell you the view from over here is way better. I love you girl. xoxo

When you think of Riley, think of Elsie…especially over the next 2 weeks as she goes through her conditioning and transplant. To follow her story you can read updates on her Caring Bridge here: http://www.caringbridge.org/visit/elsiebrooks.

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.

photo-49

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:

http://www.amazon.com/gp/registry/wishlist/37IX0FPKGMSST

Target:

http://www.target.com/RegistryGiftGiverCmd?isPreview=false&status=completePageLink&listId=tpSUFAcTqQR_bAvBC_xDKQ&registryType=BB&cumulativeTime=-1&isAjax=false&noOfPings=

GoFund Me:

http://www.gofundme.com/3x0iig

You can also follow Riley’s journey on Facebook:

https://www.facebook.com/rileyjanebrown?ref=hl