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

Second Home

This place. Second home. In some ways…in so many ways as I’ve said before it feels more like HOME to me than any place ever has before. During this admission I think I’ve figured out why. The me that I am today…she’s FROM here. This person that I am was born the day I walked into the doors of the old Parnassus campus…UCSF is like the small town that this person I’ve become is from. I was raised here, learned the lessons that would lead me in life, discovered my true values, leaned on my community, made lifelong friends and then one day I escaped small town living and went out into the big world. But much like a Hallmark Christmas special I always find my way back here…sometimes for a few days and sometimes there’s a bigger lesson to learn that keeps me around a while. My hope…this visit is the former. ⠀

But really. Hand to God it’s like country song level small town lyrics here. There are people that have known me for my “whole life”…I run into them in the halls and cafeteria (the hospitals small town version of sidewalks and super markets)…we catch up on “back in the day” stories and they still remember my awkward/embarrassing phases. We hug…no…we embrace…like only the way you do with humans you really love but don’t often see. I then see people who I’ve never met but they know I’m from here so no introductions are needed…word travels fast in a small town……they’ve seen me around…they’ve heard about me, about Riley, about The Mark Makers…they know me by proxy. Because we’re all from here. Our nurse last night knew us through these small squares of social media because the families I serve she does too. So while we didn’t know each other we have loved and lost the same people. We’re connected. It’s so real. It’s surreal. And Riley…she’s one of the small town heroes. There are quite a few here but it wouldn’t surprise me if there was a full on parade in her honor one day. ⠀

We’re settling in, soaking up the nostalgia, reveling in the small town charm and looking for what brought us here…what we always come here to find…health. Once we’ve found it…back to the big world we go. ⠀

Ps. The view isn’t bad. ⠀

One Step Closer…

Remember a few weeks back when I started a sentence with “To say I’ve been dreading this is an understatement…”? That was in reference to our admittance. What has happened in the time since then has been loosely chronicled…I’ve shared some…all of what I’ve wanted to…all that I’ve been capable of…all that has seemed fair both to those following from afar and those closely intertwined in our lives. I’ve been told more times than I can count that my writing makes people feel as though they are right there with us and some of the places we’ve been I wouldn’t take a single one of you.  Well…to say I’ve been dreading THIS post is not only an understatement but one that won’t make sense to anyone.

We are going home tomorrow.

Home.

Tomorrow.

Home.

Tomorrow.

I’ve only cried once since this whole thing started. ONCE. And that was in the moments that directly followed her being intubated. I’m not saying that because I think I’m some strong human that doesn’t cry…quite the opposite. It’s a serious flaw, I’d likely be a better human if I could release. It’s just…crying isn’t something that I do and especially not in crisis…it’s not my thing. I persist. I mother.  I bottle. I calm. I suppress. I write. I avoid. I nurture. I deflect.

I. Don’t. Cry.

For the first time…tonight… I feel the urge to cry. It’s taking every bit of me not to. But here’s the thing about not being someone who cries…it’s not in my practice therefore I fucking suck at it. When it happens…it’s heavy…I can’t stop and when I do it’s too late… I’ve made myself sick. Like migraine, vomiting, can’t see straight SICK. Remember…I bottle. I suppress. I avoid. And when I don’t…I vomit. It’s a very appealing and healthy coping mechanism, I know. I’m working on it. Well I was…then this happened…slight set back.

Home doesn’t mean the same thing it did last time though I do find myself feeling familiar with the emotions coursing through me. It’s deja vu on steroids (I don’t mean that to be a pun since Riley is ON steroids but hey…if the shoe fits). I never read what I write but I feel like if I was brave enough I would click back to posts circa January 2014 and find that I was feeling some of this same emotion back then. Or maybe not. Maybe I shared it, maybe I didn’t. I don’t remember and I’m not brave enough to find out. But tonight… I’m terrified.

We’re going home. She is no longer sick enough to be in the hospital but no longer healthy enough for the world. That means…home. Home doesn’t mean better. Home doesn’t mean mystery solved. Home doesn’t mean cured. Home doesn’t mean “phew glad THAT’S over.” Home means…I don’t know exactly what it means. According to Webster it means “a house, apartment or other shelter, the place in which ones domestic affections are centered.” Home to me means I have about 16 hours to pull my perspective shit together and keep moving forward. Home to me means walking into a place that looks a lot like somewhere I used to know. Home to me means rebuilding a new normal once again. And then there’s the truth…what in this moment it really means to me…the thought swarming my thoughts that I’m struggling so hard to suppress. Right now…Home to me means…one step closer to the hospital. I can’t think that way. I can’t walk out of these doors tomorrow and into those wondering when I’ll walk back through these. I can’t feel that way but I do. You don’t see what I’ve seen and not feel that way.

I love this little girl so much. I’ve loved her since the second she was born and her gooey naked little body was placed on mine and I’ve loved her more every moment that has passed. For every torturous thing I have witnessed done to her while half the time aiding in the acts I’ve been split open a bit deeper and the gaping holes left have been packed with more love. I don’t know if my wounds will ever heal or if much like her prophylactic medications I will just continue redressing them with love. And I don’t care, I don’t need to be whole…what a boring existence those lead who’ve never been broken. I can be broken…I’m not the pillar of strength in this journey…she is. I know that she will fix me over and over again…I know that no matter what happens the way that I feel about her will always…in time…fix me.

The one thing I do know about home is that it is where she belongs. It is where she deserves to be. Her battle will continue…it will always be inside of her…cells vs organs…inflammation vs tissue…graft vs host…Riley vs Riley. I have to stop making this about me…what the fuck does it matter what home means to me? What does home mean to HER? Home means we are back on her turf…she can heal at her pace…in her environment…play with her toys…splash in her bathtub…sleep in her bed…be with her family…in the comfort of her own HOME.

Riley is going home tomorrow…and when I look at it that way…I am too.

 

 

Hello Hospital…

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.”

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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.

My Kate, My Elsie

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.

Our girls finally meeting after months of being just steps away.
Our girls finally meeting after months of being just steps away.

To read more about her journey please visit http://www.caringbridge.org/visit/elsiebrooks.

To donate visit http://www.gofundme.com/ElsieB

Presley, Presley, Presley

I’ve talked a lot about strength the past few weeks and really if I want to give a true picture of that I’m going to need to turn the focus to our other little girl for a few…our 3 going on 30 year old Presley. 😉 Now in no means am I trying to belittle an instant of what Riley is going  through, she is a rockstar and we can all atest to that. However, Riley knows no other life, Presley does. Presley knew a life prior that was all about her, a life in which Mommy was always home, a life in which everything was explainable. Presley was our first born and the first grandchild on both sides of our familes so needless to say she was a pretty big hit. I wasn’t sure what to expect from her when we broke the news that there would be another baby joining the mix. Sheer joy was what we got. She loved that little girl from the minute she could understand that there was a baby in my belly. During the dreaded morning sickness she cuddled me and retrieved me “medicine” in the form of Preggie Pop Drops (come on Mamas you remember those), she practiced being “big sister” on her stuffed animals for months in anticipation of Riley’s arrival and when Riley came Presley was ready.

"Mommy, this is how I gunna brush baby Riley's teeth."
“Mommy, this is how I gunna brush baby Riley’s teeth.”

Chris and my Mom brought Presley to the hospital the day Riley and I were set to come home, no one had told her that baby Riley had been born…we wanted to see her reaction. She had been at my Moms for two nights and so when they walked in the door and she laid eyes on me she was thrilled to see her Mama. Back then being away from me for 2 days felt like a lifetime to her. She scurried over to the hospital bed and jumped up on my lap with a big hug. Instantly she backed away realizing the closeness between us was different…she looked down at my belly completely confused as to how she was able to be so near to me…”Mommy where’s baby Riley?” she said with a little bit of anxiety and fear in her voice. She had grown so used to my uber expanded belly as Riley’s home that its deflated state left her puzzled. I then pointed to the little clear crib beside the bed where Riley lay sound asleep…”She’s right here baby.” …without skipping a beat Presley excitedly mutters “Can I tickle her feet?!?!” Presley was as instantly in love as were we. From those first moments she was gentle, brave and bursting at the seams with admiration for her baby sister. Riding home from the hospital I sat in the middle backseat between my two daughters, we were headed home to start life and I couldn’t wait.

Presley meeting Riley for the first time
Presley meeting Riley for the first time

The three weeks that we spent at home before the SCID storm struck were magical and exhausting all at once. Two kids is a lot, you’re hormonal, they’re needy, all involved are beyond tired and you feel like you’re learning to be a parent all over again because well…you are. Presley was such a helper..sometimes too much. Often it would take me twice as long to do something simply because Presley insisted on aiding or overseeing my mothering…according to her, she knew best how to shake a bottle and unfold a diaper. Presley welcomed Riley and never once feined jealousy towards this little lump that was now consuming much of the attention once reserved for her. She was so proud to show off her baby sister and jumped at any opportunity to tickle her toes.

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Presley went from being the center of our worlds for 3 years to then sharing that stage for 3 weeks and then had her family and the homelife she knew shattered. For 3 years she woke up to my face and fell asleep to my voice almost exclusively minus the occasional business trip or slumber party at her grandmas and now I am gone 4-5 days a week. The little baby that she patiently waited on for months and only got to enjoy for weeks is now gone from her home. Riley remains at “that place getting stronger” while Presley is home trying to go about things as “normal” though everything she has ever known is different. Life has changed the most for Presley no doubt. She is getting the shortest end of this stick in so many ways. My heart aches and breaks for her more times a day than I can count. The first two weeks were hard on her, so hard there are simply no words to fairly describe the confusion and pain she must have felt. I just wanted to hold her, to be there for her and tell her how much I loved her but I couldn’t…I had to be here, I had to be with little Riley. As torn as I felt during those weeks at least I understood, of course I didn’t understand why this happened to our family but I understood the reason for my absence…Presley did not. The beauty of 3 years olds is their resilience, I’ve said it a million times but I will continue to say it because it deserves the recognition. Two months into this rollercoaster that is now our life and it is normal for Presley. Does that mean she likes it? Hell no. But she is handling it on a daily basis. She definitely has her moments where she misses Mommy and just wants me home but she is handling this with true grace. Not once has she acted mad at Riley for any of this, she does not blame her, feel anger towards her or even so much as make a snotty remark about me leaving her to be with Riley. She only acts out of concern. She misses Riley. She wants to know when I will be able to bring her home. She always says “Mommy it’s takin’ a long time for Riley to come home” and I simply reply “I know baby but soon enough she will be.”

There will be a day that I will be back home with both of the girls and a few weeks later Presleys exterior will look and feel as though things never changed, on the interior however she will be forever changed, forever stronger because of this. The tears that she cries for me are not signs of her breaking but signs of her courage to overcome, signs of her ability to feel love and sadness but also pick herself up and giggle her way out of a tantrum. While it breaks my heart I know that the more adaptable and able to face change that my girls are the better that will serve them throughout life. Presley will continue to grow to be an amazing young lady, she will understand struggle, compassion and patience more than most adults before she’s even able to tie her own shoes.

View More: http://megperotti.pass.us/brownfamily

I shared this conversation we had on facebook a few weeks back when it took place but it so well sums up her ability to deal that it is worth documenting again…

“Mommy, I wish Riley would come home.”

“I know baby me too.”

“When will she? It’s taking a long time.”

“I know Pres…she just needs to get a little stronger before she comes home, remember?”

“OHHHHH yeah Mommy I forgot (very excited)…last night in bed I was wishin’ for baby Riley to come home and then when I went to sleep I had a dream about her…Mommy she is SOOO cuuuute.”

Think of something sweeter than that…I dare you.

The 11 days that I was just away from Presley was the longest absence we have ever shared. That was a serious strain, by day 7 I was absolutely crawling out of my skin and so was she. Again, at least I understood the reason. We made up for the missed moments as much as we could over the weekend and all involved are thrilled that long stretch is behind us. I wrote a letter to Presley in my journal back in early September, stumbling across it today is what brought on my need to share a bit about her.

9/1/2013

Dear Presley:

I haven’t had the chance to sit down and say it but Happy 3rd birthday little bean. As much as I cannot believe you are already 3 years old I also have a hard time remembering my life before you. You’re Dad and I ask each other all the time “what did we do before Presley?” You have brought an amount of joy into my life that I simply could have never imagined. Looking at you now and seeing the strength you already have blows me away, I could not be more proud. You are my rock. You are my safe place. You are the glue for so many. You glued my heart back together when you were born and you have held it in place ever since. When little Riley came along it was amazing to become a Mom all over again but even more amazing to see you become a big sister. The amount of love you showered over her in the 3 short weeks that we shared with her at home was amazing, I couldn’t believe that much love could come from such a small person. At your birthday party when asked “Where’s your baby sister?” I couldn’t have been more proud when you strongly and sweetly replied “she’s at that place getting stronger.” It broke my heart, not because of Riley but because of you. I am in awe of you. I know you miss her, I know you feel the void yet you are so brave, so strong. I admire you, I cannot believe that we created you, that we made something to perfect. I am so sorry that I am not able to be with you everyday, there is not a moment that I am away from you that my heart is not breaking. I miss you, I miss you dearly. Just know that Riley and I are up here both trying to be strong like you.

-Mommy

As you keep Riley in your thoughts please be sure that Presley is not far behind. xoxo