Monday, August 14, 2017

The Long Hot Summer (All By Myself)

I'm tired.  I've been tired before.  Hospital tired, childbirth and new mother tired, world weary tired, scared tired, and just sleepless tired.   I'm a kind of tired now that I'm afraid might not go away.  I'm trying to do right tired. I'm lucky. Privileged. So fortunate.  I know this and I don't want to overlook it.  But I'm also still tired.   Is it because I want recognition for trying to do right?  Is it just growing up tired? Is it afraid I'll never be safe from all the things I'm afraid of tired?  Is it all of those tireds put together? I don't know.  But I used to be 'wake up every day ready to take it on'.  And I'm not now.  My trust, my faith, my effort, and my belief that it might ever pay off are all tired.   Let's go ahead and knock those kinds of tired on their ass, because there's a lot of work to be done.  

In just a few hours, I get to hop on a plane and go to one of my favorite places with some of my favorite people and join my favorite son (there's only the one, don't judge) and then bring him back home for the next chapter.  I've spent almost three months completely on my own for the first time in my adult life.  It was hard.  In all of the ways I expected it to be, and in a lot that I didn't.  I'm glad that I did it, for him and for me.  After the initial phase of having no idea how to spend my time with no breathing treatments and tube feedings and homework and discipline and no one to tuck in, and questioning whether I did my very best at all of those things, I had a whole lot of time to think.  A. Whole. Lot. And to realize- not that I didn't know- but to really come back to center and focus on what it is I want out of life. And for possibly the first time, truly strategize on how I'll get there. And things crystallized for me in that time.  The things I spend a lot of time talking about and worrying about are truly not the things most important to me.  The things I spend my days doing, ARE. And on that note, I am ready.  I am ready for a couple more semesters of chaos and stress before another entirely new set of stressors and superficial worries take over.  But I have a vision that I've never had before. It doesn't focus on romantic relationships or even friendships, as much as they sustain me, or how much someone thinks I'm great.  It focuses on achieving real goals for myself and how they'll benefit myself and the one child I still have under my roof. (And by proxy, the beloved one who I do not.) I'm so, so ready in that regard. I'm probably still going to stress and complain here and there, try as I might not to.  

And as ready as I am, I'm still tired.  I'm tired of hoping to prove that my heart is good enough, that I'm smart enough, that I am qualified enough, and whatever other valid but ridiculous things I feel I need to prove to any and everyone who might be watching.   And I realize that that strong desire to be recognized for what I am doing is also vain and selfish.  But man, I'm just like you, and I just want to do right, and I want people to know I'm doing right.  I'm going to have to learn to balance that, and sometimes let it go, while also continuing to listen.  

Being the mom of a kid with scary medical stuff, sometimes you get recognition you feel like you don't necessarily deserve.  Because in your position, who would do differently?   Surely the answer is that some folks do, but most folks would work just as hard and do just as much, often more, because ...well, that's just what you do.  Right?  And when there comes criticism where you're used to getting praise, it's uncomfortable.  It's also inevitable.  How do we learn to balance listening and not living to please? Yeah, don't ask me.  I'm unbalanced in that regard. 

So, tomorrow (or rather, later today), starts a new chapter in an old book.  And in the end, what I hope to find is not praise or criticism, but some sort of solid faith in myself and my actions, that I'm on the right path and doing the right things to really believe in myself and know that I'm doing my best for what matters, and it will lead, with a little- ok, a lot- of luck, to the kind of life I hope to give my kid, and myself.  


I've had enough of selfish introspection.  It's a good thing I had the chance to do it.  I do think it made me better. I KNOW it did. But I'm ready to get back to work on the life that doesn't look like I though it would, but I definitely chose for myself.   I love that life, as challenging and tiring as it may be.  I'll be thrilled to be reunited with J.  I'll be tired again with the struggles that life brings soon enough.  But I hope that I don't forget what I learned in the time by myself, and I hope that no matter what kind of tired I am, I don't forget what it's like to be left without the struggles that I want most in life.  

Tuesday, June 13, 2017

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.

Tuesday, May 23, 2017

"Oh Shit," or, A Story of How We Wound up Admitted to the Hospital, Part 1

     This morning I am curled up in a green plastic chair with free coffee that is more accurately hot caffeinated sugarmilk. I wasn’t AT ALL embarrassed as I traipsed down the nubby hall carpet with little white rectangles full of sugar slipping from my free hand as I carefully balanced a very full cup of black liquid with every intent of turning it into the sweet cesspool of artificial and refined ingredients that sits before me. 

      Yesterday at this time, I was deeply engaged in the Monday Struggle of dragging two butts out of two beds to do too many things for one 24 hour day.  Kicking off the festivities were back-to-back specialist appointments in Pulmonology, one for sleep disorders, on ea regular CF checkup.  With much effort (and lazily calling across the hallway) my spawn crawled into my bed for the traditional morning cuddles, and he told me his cough felt yucky this morning.  Like everyone else within the Northern Hemisphere, Jackson has struggled bit with allergies this year. Last month, he had to do a three week round of antibiotics for the first time in a long time, and got sick enough that we had to stay home and miss my little brother’s wedding.  The antibiotics- whose job it is to keep the bacteria living in J’s lungs at bay when his immune system gets compromised in any way- seemed to do their job. I was impressed at how he recovered, given how quickly he had gotten sick.  And so we went about life, handling all of the other things it piled on our plates, generous helpings of love and mundane stress, days of ‘am I doing this right?’, homework from first grade and college, dinner and dishes, soccer and yoga, all of the daily ins and outs that help buffer us from the reality of how quickly things can change. 

     On Friday, the cough showed back up.  We increased the treatments that help to clear J’s lungs of the especially viscous mucous that is the hallmark of Cystic Fibrosis and a breeding ground for bacteria that causes the infections that scar the lungs and cause the damage that could ruin the house that Jack built. (Still with me?) We took it easy over the weekend.  J was a little whiny, and now I’m dealing with the useless but inevitable mom-guilt of setting a firm boundary when he said he was too tired to walk and refusing to carry him, leaving him tearfully clung to the trunk of a tree until the more sympathetic couple behind me let him hitch a ride in their wagon. I still didn’t think much of it.  He’d had a big weekend and that takes a little more out of him than the average kid. So when he crawled in to bed for morning snuggles and his cough sounded a little wetter and a little worse, I decided we wouldn’t be going to school after his doctors appointments.

     Like any other quarterly appointment, we wandered through (what J bubbles with laughter every time I call it,) ‘the eejit parade’- the slow rolling line of less frequent-flyers who don’t quite know how to navigate a parking structure. We hustled across the street to the specialty clinics, making a game of our near-lateness, and in through the wide, automatic double doors of the building. Just as we crossed the threshold, a coughing spasm gripped him that was more powerful than I had seen him have before.  He would have dropped had I not held him up. It passed as quickly as it started and we continued up the elevator to his appointments.

     Part of Jackson’s regular CF checkups are lung function tests called PFT’s (Pulmonary Function Test- pretty self explanatory, no?) He just started doing them in the last year, and so he sometimes struggles to get them just right as far as accurately measuring his lung capacity.  I definitely raised an eyebrow when they came back and said  he had tested a whopping 30% below baseline. When was his last treatment? An hour and a half ago… far too soon for him to show such a drop. So they gave him another round of albuterol (a medicine he breathes in that dilates his airways and helps him breathe better) and tested again. No better.  While he was out repeating the test, I spoke with his doctor about  the possibility of his being admitted for inpatient care. 

     It has been a magnificent three and a half plus years since Jackson needed IV treatment.  Sinus surgery, and then the recent addition of Orkambi have upped his health game considerably. But Jackson is a CF kid, and CF kids need a tune-up *about two weeks of IV antibiotics, and usually steroids) every now and again to keep the bacteria that live in their lungs from taking over when they’re under the weather.  His doctor said we could try another round of antibiotics and steroids, but that we would likely be looking at a hospitalization in the coming weeks with a drop in lung function that drastic.  I quickly weighed the facts.   In two weeks, J is set to take off on an amazing summer adventure a couple thousand miles from home for the duration of his summer,  and the thought of him becoming that sick, that far from me, or of missing out on all of the things he had planned, or even of simply enduring scarring or damage because we weren’t aggressive enough in his treatment, was all the answer I needed.  He would be admitted as soon as I could grab a few things and get back up to the hospital. Remind me next time, to not to forget shoes and clean underwear. 

     My heart simultaneously sank and raced.  He has been so healthy for so long, and never, ever have we been blindsided by a change in his health like this.  There’s always more of a sign, changes in behavior or energy- and I think, looking back, I could have and should have recognized those things as well.  To have a little monkey who is one moment vibrant and wild and the next being hospitalized, it’s not something you can get used to.  I fought back tears and decided to instead handle business as we hurried back to the car.  As J climbed into his seat another coughing spasm sent him into fits, and vomiting all over the parking garage.  Sorry, whoever had to clean that up.    Back at home, I parked him in front of the TV, something we never do anymore, and scrambled to throw a few things into a suitcase- mostly laptop, phone chargers, human sized fluffy towel to wrap him in during sponge baths, and socks and underwear for J.  I didn’t have any laundry clean, I had food out to make for diner last night.  No part of me left the house yesterday expecting to learn that my son had lost 1/3 of his ability to breathe.

      To spare you the dramatic ramblings of an emotional mother, IT SUCKED.  I was scared and shocked, as was his dad and the rest of our family, some of whom had seen him less than 24 hours ago.  But in the end, this IS the best course of action. This is the most aggressive way to attack what is attacking him.  This is how to make my baby better.  I am pushing to be able to complete his IV treatment at home, a first for us, but his doctor conceded that kids who finish treatment outside the hospital tend to have better outcomes (less muscle atrophy and exposure to hospital borne illnesses.)  But, even to accomplish that, we will have to see a big leap in that lung function, and it will be at least a week before we can get sprung.  It occurs to me now, that while we are solely focused on making as much progress as we can, as we should be, I am afraid of what happens if he doesn’t get that 30% back. Nope.  We cross that bridge when we come to it.   Reality is heavy.  We have had such a blissful reprieve from it while we all rebuilt ourselves and our lives and we have been so, so lucky to be focused elsewhere for so long.  We are so, so lucky to have every single resource we do, doctors, nurses, hospitals, therapists, friends, family, donors and benefactors, bystanders, visitors and cheerleaders.  We are just so, so lucky to be here.  All of us.