Feely Words and Grief-Purging

It should surprise nobody that I begin yet again by saying, “I’ve been sitting on this post for a few weeks.” I knew this summer was going to be hard with J traveling for such an extended period (What do I DO without being the mom?)  I knew when Jackson was admitted to the hospital so suddenly and nerve-wrackingly with a whopping thirty percent loss of lung function, that it was going to be harder than I thought. I didn’t know, however, that I was going to be facing a resurgence of grief I hadn’t experienced since his diagnosis.

Three and a half years with no major health issues is nothing to dismiss.  That’s an accomplishment, and if we can go that long before the next time he’s admitted, I’ll take it. But for three and a half years, we’ve been able to focus on other things, have relationships, take trips, go to school, think about careers, and act like blissfully unremarkable members of the human race.  This changed all that.  It made the monster real again.  This thing came out of nowhere and stole 1/3 of his breath while we weren’t looking.

I knew when someone would come relieve me at the hospital and I would start to feel like I was choking before I got to my car, that I was going to have to get back to dealing with things I like to pretend are ‘just life for us’.

Jackson didn’t recover all of his lost lung function during his stay.  Only eight percent.  I wasn’t there the morning he repeated the test, I wasn’t there when they told his dad that, I was sitting on my stairs, seeing the ratty beige carpet swim before my eyes while I tried to tell myself we could still get that other 22 percent back.  As a numbers game, Jackson started out with a baseline of 90% lung function.  He suddenly dropped to sixty, and currently has 68.  Those numbers are not set in stone, those numbers don’t control his fate, those numbers have made his village work harder than ever to make him strong and healthy.   But those numbers have also scared the absolute living shit out of me.  (Sorry, I was going to try not to swear in this post, but you know who you’re dealing with by now.)
Sixty eight percent is scary for seven years old. The numbers are, in great part, why I find myself now randomly bursting into tears while driving or sitting alone.  Those numbers represent mortality in a way that most of us spend our living days trying not to think about.   And four days after I got to tear out of the hospital parking garage like a reasonably cautious bat-out-of-hell, I left my fragile little whirlwind on a flying tin can bound for New York City.

This is a victory.  Jackson, four days removed from one of the most serious health events of his life, can travel and learn and enjoy the world, nebulizers and vest, pills and compressors in tow, wide-eyed and wonderful, while I knock out as much summer school as possible and get one step closer to being able to stand on my own two feet. 

This is also a beating, leaving me no med schedules and supervision with which to busy myself and distract from the fact that grief is not a process that ends. If you are a caregiver who repeatedly errs in believing, “oh I’m ok, I’ve dealt with that, I’m over it now! Ta-daaaaa!”, grief unsettled by crisis occasionally leaves your wandering mind to turn over every settled wound like a suckerfish with rocks in a fish tank-  turning up mud and blood and sludge and putrefying the water you thought was clean.  So that’s what I’m here to talk about.  Grief.  An experience so human that we can all identify with it, and so unique that none of us experience it in the same way.

A lot of what I write here seems to have a confessional tone.  It may be a bit perverse, the way I enjoy exposing my flaws and errors, but there is satisfaction to me in recognizing, admitting, and moving forward with every one of them. I’m also a huge proponent of being, y’know, HUMAN, and not punishing myself more than is necessary when I’ve made a mistake. I’m not afraid to admit that it has taken me years of therapy, failed relationships, and occasional bouts of embarrassing outbursts to identify what grief looks like on me. 

The first hallmark of my grief is anxiety.  A sense of doom that creeps in out of nowhere, robs me of sleep, leaves me in tears with no idea why, squeezes my chest until it physically hurts, makes me feel like a frightened child.  I know I am having anxiety when the voice in my head chants over and over, “I want to go home.”   Only home is a theoretical place that just feels safe and warm, and I don’t know where home is.

The second, and more insidious marker of my grief, is an intensely inflated sense of fight or flight.  It’s the one I’m less eager to lay bare to an audience, the one that makes a big deal out of nothing, the one I sometimes call Chicken Little because she believes THE SKY IS FALLING and we are all about to die and by god we better pull out the big guns and fix everything RIGHT NOW.  She is hypervigilant. She doesn’t sleep, either. Sometimes she starts fights out of principle because she can’t be convinced that the world is not going to violently implode if we don’t fix this RIGHT NOW.   She wears people out.  She’s *that* girl.  I am ashamed of her for starting shit, and at the same time, I want to make her feel safe and taken care of so she can stop starting shit and start breathing.

Let me tell you something, it is EXHAUSTING to run around with your hair on fire. I need help.  After a good two weeks of kid-free (I know, it’s supposed to be some carefree spritzy vacay we all dream about, but it ain’t) anxiety attacks that have done a number on my mental health, I have made contacts to try to find some therapy that deals with caregiver grief.

  I can’t out -exercise or out- study it, I can’t out-drink it or hide from it.  It is demanding to be dealt with, and the thing that makes me feel like this particular pothole might not total the car, is that I recognize it.  I mean I might have recognized it with a particularly cutting reminder of how my crisis brain works (thanks M, shoutout for the insight, wink, wink), but I totally recognized it.  And instead of trying to hide from it, I’m going outside myself for help.   It’s too easy to feel ashamed, ‘crazy’, or like it’s something I should just grow up and deal with.  But it is 2017, and we talk about mental health.   We lay out our embarrassing, our devastating, our frightening, and our suffering.  There is no stigma in my brains chemical reaction to the increased threat of having to bury my child.  There is no stigma in the changes that have happened to me mentally and emotionally as my friends have been buried.  If I’m good at anything, its running my mouth, and so today I’m just here to talk about grief and mental health.  I am somewhat seriously considering collecting essays on grief and making a book we would all feel better for writing but nobody would want to read. 

Now if you’ll pardon me, I have vomited enough feely words to get myself through the night and I have a few hours to cuddle this chunk of snugglebutt (lungs aside he has gained 6.5 lbs since being admitted) before he’ s off on the next leg of the Great Summer Adventure of 2017.  We will talk more about grief later.  I always have more to say.


  1. Writing has always been my therapy, and after becoming a mother it also became my haven to understand, process & (somewhat)copen with the curveballs life tends to throw out of spite from time to time.
    I'm drawn to your words in the way so few can do, because although I don't know CF personally, you let me (us, everyone) see your heart so clearly when you rip open your chest and bare your most vulnerable self in this way. It's very brave, and hopefully cathartic, as things spin out of your control to be able to put one foot in front of the other metaphorically, so that being said I hope in your expression, you've lifTed a little bit of the weight and burden from your chest, and can get a few hours of rest for your mind and soul.

    I can't begin to imagine life and your mind, riddled with the fear and worry having a chronically ill child , but just wanted to stop and say thank you. Thank you for being his warrior when he can't, and for being unapologetic and unafraid in your writing. You make your village proud, Amy. Here's praying for that elusive 22%.

  2. It's like PTSD and I get you momma!

  3. "I am somewhat seriously considering collecting essays on grief and making a book we would all feel better for writing but nobody would want to read."

    Let's do it.


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