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.





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.



2 thoughts on “One Step Closer…

  1. Alissa, You are so profound … Gut wrenchly profound ! When I first read your words going “Home” it was all I could do to not jump up and cheer! Then I continued reading. Don’t let anyone tell you they know how you feel! Until they’ve walked in your shoes they can’t even imagine. They try to but they can’t !

    One thing I do get is the not crying …. When I lost my little son in a horrible accident many years ago, I was afraid if I let go of the grief it would consume me. I can remember running the vacuum and screaming and crying. Maybe I thought if no one could hear me it would be ok. But the one terrifying thing was that once I started I was afraid of never being able to come back from such a deep dark pit of pain. I was afraid that I wouldn’t be able to be there for Tiffany , who was only four and a half at the time. In reality I was only there in a shell as it was.

    Sorry, I don’t mean to be so maudlin.

    Thank you for letting us know what’s going on . I’ve been wondering and praying for you and your whole family.

    I promise I won’t stop!

    Sent from my iPad Pamela (Gigi) Stringer 322.148.2306. Mobile 322.113.2179. Home


  2. hon, have you ever throught to put all thisin a book it could be a great thing for every one to read and under stand all that you and your darling little girl and family have been thur God Bless you all for being so darn strong. love patti & bob .

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