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. 

Tuesday, August 23, 2016

Dumbass: A Story of Spectacular Failure


Facebook will show you my half-joking “I’m not ready!” first day of school pics, an adorable first grader laughing at the lunch table, carrying his backpack to his new class, marking the milestones and displaying with pride the little person my days and nights revolve around.  But it won’t likely show you the behind the scenes missteps and honest to goodness disasters of the day. It’s super easy to share the self-congratulating triumphs and skip over the massive errors in judgement. Who wants to tell the world they done f’ed up?  Not me.  But- here I am, to do just that. 
We live online in the form of everybody’s highlight reel, virtually keeping up with the Joneses, hustling and Instagramming and filtering our way to the perfect #TBT. I guess I’m just here to expose myself as exactly what I am.  A real live, ultra-human, hot mess, trying to jump from one lilypad to the next without drowning in the mud.
My summer was pretty amazing.  I started school, I got great grades, J was healthy and we both got to travel and adventure around. I participated in my first art show and even sold my work!  I fell easily into the feeling that for all my mistakes and missteps, I’D MADE IT.  I had conquered fear and hardship and finally triumphed by becoming the person I really hoped to be.  Mom, student, artist, and all-around badass mofo.  All that trouble was finally behind me.  I was, in fact, untouchable. 
Y’all know what hubris is, right? 
When I studied the Greek tragedies in high school, that definition stuck with me disctinctly. Overweening pride.  There’s no such thing as invincible. 
Maybe I underestimated the caliber of change headed my way even after all the changes I’ve been through as of late.  Maybe I just thought things were going so swimmingly there’s no way anything could knock me off balance.  Maybe I was so happy with the respite from feeling that disaster and anxiety and depression lurked around every corner that I just gleefully cast caution aside and went full-throttle, in-the-moment. 
The breakdown- Jackson got sick.  Pretty suddenly and moderately seriously.  We were told that he had a week to show marked improvement or he would be checking in to the hospital instead of his new classroom.  I knew he wasn’t well, but it still knocked me off my axis.  We’re stretching towards three years since his last stay for medical issues.  I felt an imaginary cushion of health and denial between us and the reality that Cystic Fibrosis can raise its ugly head without warning.  To say I didn’t take it well was an understatement.  I’ve been struggling the past few weeks anyway.  The dissolution of my romantic relationship had me low, questioning my role in a breakup, my view of myself, etc, etc. I just wasn’t feeling like the badass I had been a week before.  And with the announcement that there was consistent crackling inside my boys’ lungs, and he had lost both significant weight and lung function in just a few days, I began to feel the ominous building of uncontrolled anxiety. I confided in J’s dad how I was feeling and that I knew it wasn’t a rational reaction, and he confirmed, “you do this from time to time.”
It's true.  I come to the point where I think I’ve safely bludgeoned and buried my neuroses and I’ll ever have to deal with those icky feelings again.  And then life laughs and throws a tripwire in my path. Regardless, I found myself brutally unprepared to behave like an adult at this particular juncture.

A drive-by rundown of my errors leading up to the biggest blunder of all.  Minor miscommunications caused us to miss the deadline to register J for school.  So we had to do it the morning of the first day. Which made him an hour late for class.  And in the process, we discovered when turning in his shot records that somehow the kid who sees at least one doctor a month hadn’t had vaccines or a regular pediatric checkup since he was 4.  (He’s SIX now) I met with the principal to discuss setting up a meeting to go over a 504 plan (written and binding agreement with the school that provides for his medical needs on campus) while his dad waded through the mess of medical paperwork and missed vaccinations. A stressful morning adventure for ex-spouses to undertake together. We finally got him to class and he was ready.  I truly was not.  Suddenly all my ability to protect and shield and explain for him was sucked out of the atmosphere.  It just seemed so big and he seemed so little and I did the thing I never do- I publicly cried at leaving him.  I tried to hide my sniffles and snot as I walked back to my car, pretending to look busily at my phone as neighborhood joggers passed me on their morning run. I got to my car and full-on sobbed for fifteen minutes before heading home.  I got home and cried some more. More than was reasonable.  The dam broke.  I cried hard and non-stop for over two hours.  I probably needed it. All that feeling invincible adds up, you know.  And as I had spent the weekend staying up all night running tube feeds to put desperately needed weight on J, I was exhausted in general and exhausted from the torrent of tears, and exhausted by life in general.  I laid down and passed clean out. 
I woke up at 3:24. Pick-up time is 3:00. Until we move (More change! Good change! But still change!), I am 15-20 minutes, door-to-door, from J’s school.  I physically shouted some very choice words as I stumbled back into my shoes and ran out the door, eyes still blurry, phone to my ear, fibbing to the school that I had been stuck in traffic and was on my way.  I admitted my blunder to J’s dad, who, living across the street, hopped in his truck to pick him up, none too pleased with me.  Jackson was fine.  I screwed up big time, but luckily it had no serious ramifications.  None aside from my becoming hostile and defensive and starting a fight and then crying even more.  And some more.  I’ll tell you honestly, I’ve been a joy to deal with lately. An absolute treat. 
That’s my confession. I slept through picking my kid up on his first day of school. The invincible collegiate artist badass mom that I have become isn’t invincible after all.  At all. Not even a little bit.  I am a mess of a human being, trying really hard to keep up and convince myself and everyone else that I am in any way qualified to be in charge of the life of another human being, let alone myself.  I start fights defensively- not only that, but if you do it, I will totally call you out on it, historically speaking. I don’t know how to ask for help, and I never, EVER know whether I’m standing up for myself or actually acting like a bitch. And somehow when I’m feeling like the sum of all my worst qualities, I’m supposed to still carry out the self-love and nurturing I’m always preaching. Love yourself even when you don’t feel lovable.  Forgive yourself the same way you would forgive a child. But when you feel genuinely shitty and you actually DID something worth berating…Is forgiving yourself without beating yourself up denying your responsibility?  Are you supposed to hate yourself an appropriate amount before picking up and moving on? Right now I’m satisfied with simply not feeling as horrible as I did yesterday.  There is a colorful bouquet of fresh challenges laid out before me in the coming year. Some I’m trying to prepare for. Some I haven’t even seen yet.  I’m not at all sure I’m up to the challenge.  But I know that if I try to approach them with this weight in my heart and this body damage to my self-worth, I don’t stand a chance. So for now, I forgive my many, many flaws and transgressions because I HAVE to.  I have to level up and I can’t get out of bed in the morning if all I’m thinking of is what a piece of shit I am. I have to show my kid that You can screw up and still be a good person. I have to show myself.  And let’s be honest.  We could probably all use a little more practice forgiving ourselves. So that's what I'm doing, I guess.  Publicly admitting that I am an idiot and sometimes an asshole, but I really am trying, and as long as I can look at myself and know that I AM trying, I'll keep working on that forgiveness thing. 

Monday, March 23, 2015

Another Long Hiatus...


It's been about a year since you heard from me.  And the last time I was here, I wasn't in the greatest place, or making as much sense as I would have liked to.  And in the months since, the focus has been on rebuilding and making new lives.  While there are many details that don't belong here on the grand ol'  internet, there are some that do.  So I'm here. I'm ready.  

So where do I start with explaining all that I can about all that went in to a years worth of silence?  This time last year we were preparing for a month long hospital stay at a rehab facility in Dallas to help Jackson learn to eat by mouth again.  He's had his feeding tube since he was 15 months old, and every now and then, kids on long term supplemental feeds can 'forget' how to eat by mouth.  They don't have the same need to do it that kids who only eat orally do, so slowly over the course of many months, we watched our little monkey backslide until he would only nibble at single grains of rice to appease mom and dad into thinking he was 'eating'.  

This month long stay meant sending my daughter to her dads house for the entire month, visiting as often as we could, but still not seeing much of my firstborn.  It also meant nearly a month off of work.  And to add to that, it had become clear in the weeks before that our current family model was not a sustainable one, and Jackson's dad and I had split up.  It was a personally excruciating time. And at the moments where everything was falling apart, it also started to come together, as we watched J gain five pounds in a week, excel at the feeding program, wean completely off of his tube feeds for the duration of his stay, and earn an unprecedented early release from the program.  It was brutal.  It was emotional.  It was cathartic and hellacious, and all of it was necessary.  This blog has always been about my experience.  I can't tell you what it's like to be anyone else.  Sometimes, yes, I feel selfish for the 'me, me, me'  way that it's written, but my own perspective is the only one I have, and I am willing to go out on a limb and say it's one worth sharing. But through those days where everything was pretty dark and I wasn't sure of myself or anything else, I didn't want to share anymore.  I needed some peace.  I enjoyed the months of good health and almost normal life and health that Jackson was enjoying.  And you know what?  I'm not afraid to say it.  Nobody gets to have it, least of all Jacks, but I wanted a break from Cystic Fibrosis.  

I wondered how he would feel someday, looking back at my words, the raw emotions that his mom shared because of the genes he was born with.  I wondered if he would feel responsible or guilty. I wondered if he would be angry at me for sharing the details of his life without asking. I wondered if it was responsible for me to continue to do so.  I was asked once or twice why I was so open about such personal things.  I even felt like sometimes people wondered if I didn't enjoy the attention that came along with my role as a bullhorn and beacon for moms raising a kid with a chronic disease.  People are always going to draw their own conclusions about why you do what you do, so I'm of the mind you should do what you think is right anyway.  And over the last five years, I have met some incredible moms and dads, cousins, friends, and others who were struggling in the face of a new diagnosis.  I had the privilege of being able to be there for them.  I remembered the very few people who played that role in my own life and how much I love them for understanding something about my life that nobody else will ever get. 


I wrestled with my feelings for months.  I also ignored them.  Because it was much easier to enjoy a normal-ish life than to keep going back to the subject of what this disease can do to  our lives, our families, and most of all, those affected by it.  I was tired of struggling with all of that.   So I took some time to not feel that particular struggle.  But as the one year anniversary of the hardest month of my life rolls around, I know the luxury of 'time off' from CF is…well, it's bullshit.  I still have a kiddo growing up with Cystic Fibrosis.  There are still 60,000 some odd people around the world and all their loved ones, living with it, too.  And sometimes I know something about their struggle.  And sometimes I can teach the people who have loved and followed Jackson for the last five years something about how we're fighting it.  Sometimes I just need to vent to the keyboard.  And sometimes I have to ask for help.  To rally the troops who have pulled, lifted, and dragged me along this road when necessary.  When it all comes down to it, I feel a tremendous responsibility to keep talking about CF.  To keep raising awareness and funds to research and develop and assist and medicate and at all costs, SURVIVE this diagnosis.  This is my responsibility.  This is not a role I chose, or J's dad or his sister or his grandparents or Jackson himself ever would have taken on willingly.  But at the same time, nobody is in a better position to use this role to do good than we are.   And so here I am.  Ready to spill my guts out to all of you, be there if you need me, ask you for your help, and do the one thing everyone knows I do best….talk. 

Sunday, May 4, 2014

Debridement and Nourishment - The Feeding Therapy Experience



Forgive a little vagueness, again, this is the story of a family, not just mine, and it's only what I see and feel, that I can say.  And there are some things that don't belong on the Internet, even for me.

When a wound occurs, like a burn- a wound likely to catch infection and fester into something worse- it's treated with a process called debridement.   Debridement is awful. It's basically vigorously scrubbing out an open wound to eradicate all possible sources of infection. It is raw, it is excruciating, and it is sometimes more traumatic than the wound itself.  But before the wound can begin to heal, all of the filth and bacteria must be eradicated.

If you've called or texted or facebooked without a response, I'm sorry. You see, I have been debrided. I have been scrubbed and disinfected to the very core, until I stood without my skin. Completely exposed, flesh and bone and no protection, whipped by the elements.   As if being baptized in agony could rebirth me. I have struggled to breathe. I have teetered on the precipice of the great, yawning chasm of black empty space and wiggled my toes into the abyss.   I have bled and I have wept until my face dried into an unrecognizable, red and wrinkled mess, dehydrated from endless swipes of a paper towel in an attempt to appear sane and rational.

I have spent sleepless nights listening to children cry for their mothers in the empty, echoing corridors of a hospital. A little boy whose legs did not propel him.  He could not get out of bed, his mother was absentee, so he simply called again and again, 'hello?' for hours, until his voice cracked and his calls gave way to the choked cries of an abandoned child.  My heart, already raw, had no filter for this kind of torment.

The sun has risen and set each day regardless of my ability to cope with life as it presents itself. The calendar does not wait for me to get my shit together and my children don't stop growing and needing so that I may collect my wits and carry on. The garbage still has to go out, the dinner has to be made, the clients attended to...

And in the midst of all of this, a gift I didn't foresee.  Jackson completed feeding therapy in record time, and was able to completely eliminate tube feedings from his diet. From 1400 calories through the belly (or 85% of his daily needs) every day to everything by mouth.  It has been almost two weeks since he was plugged in.  Here at home, I'm finding some feedings are needing less structure.  Tonight I watched him nearly inhale 5 fish sticks and chocolate laden high cal formula.  No prompting needed. I feel a little guilty that maybe I haven't been fully appreciative of this miraculous turnaround.  This child who had lapsed into being almost exclusively tube fed, cramming food into his mouth, two bites at a time. The little changes in him- different behavior. Better coping skills. Hunger. Mommy, I want fruit snacks.  The boxes and cans of food in my cart that I never in a million years would have bought (packaged and processed, lord have mercy!) but am now almost giddy to schlep up to the checkout.

And just like he was taught, day in and day out, in a place so full of suffering, to take one bite at a time, so was I.  So many things I've tried to fix by elimination.  'If I don't eat this, say this, think this...it will get better. I'll be able to avoid the pain. I'll be able to do what I have to do. Everyone will like/understand/support me.'  When maybe the whole time I should have eaten some metaphorical processed, canned ravioli and been happy to eat. Sometimes Chef Boyardee is freaking delicious. The more possibilities for 'failure' I eliminated, the more I narrowed my experience and my ability to cope. I limited my own happiness to the point of being starved for it.


So now, as I pull fish sticks out of the oven, measure out 57 grams of Lays potato chips and load the formula down with Hershey's syrup, I can be thankful. I know the steps to take for Jack when he won't take a bite.  I've helped him learn to eat.  And in the process, I'm taking bites of my own life, too.

Monday, April 7, 2014

Strong

It's 6:43 and the car is packed and ready to go. The kids will be up in fifteen minutes and in two hours we'll be on the road to one month in feeding therapy.  Of course we can do this.  Of course.  And I'll blog it all.

Something I hear a lot because of my writing and the people it reaches is how 'strong' I am. It's flattering, but always so very alien. I don't feel strong.

Strong doesn't mean attacking all your problems with a battering ram. Which I have. Strong doesn't mean shutting out the people you need the most because you're afraid. Which I have.  Strong doesn't mean being a hardass all the time.  Which I have.

Being truly strong means knowing when to yield. Knowing how to be present and not controlled by fear. Knowing that some things are more important than protecting yourself.

In an effort to be 'strong', I have been destructive.

Maybe now I can begin to learn how to be softer. Maybe I can learn to let the light in. Maybe I can be given the chance to show that 'strong' and 'tough' are not the same thing.  Silk thread is strong.  Leather is tough. Dried out jerky is tough. Life is tough. I don't want to be.