Worth His Salt

Losing It: Chronic Illness and Health Insurance in 2019

2019-05-18T00:40:00.002-05:00

It’s been a while, huh? I had mostly given up on the idea of this blog. It served a great purpose in its prime, but as I struggled with various events and changes in my life, it became something less, something a bit messy and directionless. I started this site four days after Jackson was diagnosed with Cystic Fibrosis. It helped me as much as it helped all the people that it reached. But there came a time where it wasn’t all that helpful, I didn’t want or need everyone to know the details of our life, and it just didn’t feel like a useful venture. So we stepped back. I reduced my outreach and education to tweets and statuses. It was a much needed break, and it was good for everyone.

But it’s time to come back, at least for this. In spite of our best efforts, in spite of his dad working two jobs to maintain insurance coverage while changing roles, Jackson will be losing his health coverage at the end of the month. And we aren’t sure how quickly we will be able to change that, or what kind of coverage he will have going forward.

It can happen to anyone. Health care and coverage is one of the hotter issues in our current intense sociopolitical discourse. The risk of losing protections against lifetime caps, pre-existing conditions, child and public health initiatives, and more threatens people like Jackson every day. For some, the idea of losing their health care coverage means facing the possibility of insurmountable debts just to stay alive.

It feels important to me to share this disruption in our lives, how we handle it, what it feels like, and what resources there are for people in our position.

The day we found out that J would be losing his insurance, his dad immediately filed an application for Medicaid. I called his social worker at Cook Children’s and updated her and his medical team on the impending changes. I wanted to make sure we had every resource and all information so that Jackson is able to continue receiving medical care and the tens of thousands of dollars worth of prescriptions that keep him the happy, ‘normal’ kid you see.

I’m gonna be honest, y’all- I don’t know if anyone reads blogs anymore. I’m hoping to add a YouTube channel for videos,because I know you want to see me vlogging from behind my seatbelt in parking lots like every other blowhard with an opinion on the internet. But I’ll also be keeping updates here because written references are still important. I’ll post again soon about how we are covering J’s most immediate needs, what resources are available, how to access them, who to talk to should you find yourself or a loved one in such a situation, and you can hang on for the ride to see how successful we are in the long run.

Peace out kids, it’s good to be back.

Which Foot Forward? (I'm Just Spitballing Here)

2018-04-02T22:40:00.001-05:00

My last post was written, as are many of mine, in a moment of intense introspection and weariness. Out of a desire for things to just feel better, and to do better, and have better. I frequently write from the bottom looking up. I believe that it's important to share those moments, to offer real vulnerability and to admit that I am not some pillar of humanity and motherhood who has her shit together 'in spite of it all'. I'm not. I'm fumbling through this just like anyone else- maybe even more than most- and sometimes the tools I have to cope are inadequate, or my focus is off, priorities or brain power scrambled.

I do have things to work on that have become sore spots in my life. Things that have damaged some relationships or driven me further from my goals. And I've realized, sometimes slowly, over this last year in particular, that those things (namely my panic reactions, and to be vulnerably honest, my housekeeping) have to be addressed, and will be a thing I don't just get over, but have to be mindful of and working on for the rest of my life.

Although the discovering of these elements of myself has been often painful and embarrassing, I   still think it's important to come to them with transparency. It is no longer acceptable to me to live in chaos, physically or emotionally. If I continue to do so, the next half of my life will look just like the first half, with me running from one wreck to the next, looking for places to hide from myself.

I want to be honest about those things, and the feelings that fueled them, even when it's uncomfortable to do so. I want to offer a full picture, of a whole, complex human being, as someone who embraces hope and still struggles with despair. I'm learning that at this point, trying to do that, especially when you don't dig out a good clear window of time between the feeling and the sharing, will alienate some people. I'm wondering if I share too much, or the wrong things, and sometimes, I'm wondering if the people who doubt me or follow another narrative they've decided on as truth, are right. Whether I should persist in telling my truth in each moment for the sake of transparency and fallibility, or I should work harder to cultivate a more thoughtful, planned out story.

The truth is that I am most often described as 'intense.' And that's accurate. It's something I both love about myself and work to bring under control, lest it get the better of me, as it has many, many times.

I don't want to talk about trauma and panic because I want to elicit some feeling of empathy or sympathy or be told how amazing I am. I want to talk about it because it has impacted me in a multitude of negative ways, and I need my life to reflect more than that about me. My fear will not be the story of my family. Because it's hard work, because I often felt alone in it, and because I know that in truth, I was never alone in it. BUT I   DIDN'T FUCKING KNOW THAT. People in the middle of it, they don't know they're not alone in it.

None if this is to say that my life is tragic, or my kiddo's life is tragic, or that we have ever come upon the worst of experiences. The truth is, we're beyond lucky, even when it feels like shit. It's just to say that the fear of these things can sometimes eat up a lot of the good in your life, and even if it does, it's not too late to turn around. And I don't want you to miss out on those good things any more than you have to.

I   hope to share my self-work and my real emotions in a way that doesn't convey misery, but does tell anyone who needs to hear it, that I've been scared all the time, and scared of imaginary things, and running away from myself sometimes, too. Mental health is a big ol' topic du jour, full of buzzwords and clickbait. I'm not here to Elephant Journal my way through it with platitudes. It may be one of my toughest writing assignments to date, because I have a lot to consider in regards to how in-depth I want to get with it. But to be perfectly candid, I   could use the practice on presentation, and I do feel like I have something of value to offer by sharing my own experiences.

If you feel like any of that may be of value, bear with me. I'm working on curbing my fight-or-flight response and exposure therapy for social anxiety. Do you know how weird it is to realize, as an extremely extroverted human being, that you have genuine social anxiety and have developed and entire repertoire of behaviors to avoid certain social situations? It's weird, man. It's real weird. However, there's a fun aspect to this. Being able to now see my issues from the outside, and look at them objectively while still feeling them, is fascinating.

I used to have panic attacks that manifested as just intense feelings of anxiety and avoidance. Since embarking on this particular endeavor into self-improvement, the anxiety feelings have waned because I can easily name them and talk them off the ledge. So now I don't really feel emotionally anxious, but I'll start tingling in my hands and gasping for breath without ever feeling upset. But the more I know and understand about the physiological processes that cause this, the more control I   have over them, and how I react to them, and in turn, the amount of success I have in managing them and how they impact those close to me. I have a tremendous community and support system, and it's important to remind myself of this when I want to retreat and not talk about the things that set me on edge.

To be stupid clear- I'm a show-off. I love having a good report card. I'm equally proud of being voted 'most improved.' I like to show just how great I am at doing things, and I have a tremendous opportunity to master something here that has previously held me back from some types of success that I   REALLY REALLY WANT. So the conclusion we can come to, as a class, is that I'm not likely to shut up, I may have to be reminded to check the melodrama, (and I may throw myself on the fainting couch and call for my smelling salts) but I'm going to do my best to keep shit real.

(Post Script- something is funky on my keyboard and it tabs every time I type "I ." I   keep going back to fix it, but it doesn't always work. Pretend you don't see it.)

Perspective & Mental Health; Maslow's Hammer

2018-03-24T14:02:00.001-05:00

When all you have is a hammer, everything starts to look like a nail.

This is my coming out story about trauma, anxiety, and unhealthy coping mechanisms. It is not a request for praise or sympathy, it is my own way of processing, admitting, and putting my intentions (and supporting actions) out in to the universe. I’m fond of saying, “there can be no Truth and Reconciliation, without first having Truth.” And this is my truth.

Those of you who know me, know that my adult life has been dotted with traumas. Perhaps no greater or lesser than anyone else’s, but they impacted me nonetheless. I developed coping mechanisms, I did what I felt I needed to in order to survive them, and I did not always do so in a healthy manner.

I was recently approached, at a breaking point, an intervention of sorts. It didn’t go well. Or perhaps, it went exactly as it needed to. And in that moment, and in the aftermath, I have heard things about myself like, “you act like a cornered animal, all the time,” and, “it’s like you put the bag over your head and just start swinging,” "it's always something with you." Why would I listen to people who said things like that to me?

Well, because they’re true.

I have been constantly defensive, isolated, often looking for a fight where there wasn’t one, and ultimately running from one disaster to another blaming others and seeking shelter anywhere I could. This is not healthy. It is not conducive to long-term relationships of any kind, success in life, or feelings of security. It’s harmful to myself, my family, my friends, and all of the things I want out of life.

When you’re afraid of everything, always fighting, and always running, the hardest thing you can do is sit in a room with people you believed to be your allies, faced with every fear you already harbor about yourself, it feels a lot like the worst-case scenario. It definitely elicits a keyed-up fight-or-flight response. And that keyed-up response is my whole problem in the first place. So, this group of people, presumably tired of my shit, but loving me anyway, enough to undertake the inescapably wild response I would give, set out to confront me with my behavior. It went about how you’d expect. At the end of that day, I was raw, in pain, I felt betrayed and alone. But somewhere in the back of my mind, I knew I didn’t want to keep living the kind of life I had been living up to this point. I don’t want to run from everything, and by god, I am so tired of fighting EVERYTHING. I see the possibility that the rest of my life doesn’t have to look like the last twenty years. It’s possible to have a life, that while not always sunshine and rainbows, Is not constantly painful and frightening. And I want that. I want that badly enough to stop doing the things I’ve done my entire life and try new things, things that are strange and disorienting and don’t yet feel natural. I am (back) in therapy. I am dealing with social anxiety, trauma, and aspects of PTSD. I don’t like looking at myself and seeing that there’s that much work to be done. I don’t want to admit that I’ve been that wrong and failed that much. It makes me question why anyone would stick around me to begin with. But I do have the opportunity to change that. I know I’ll always have to be vigilant about these things. I know I’ll always be prone to overreaction and unnecessary freak-outs. But now I can at least name them, I can address them, and also that there are people who have seen and experienced those things and still love me anyway.

This is exhausting work, but I believe it will be worth it. I believe I can create a sense of stability and security for myself. And I believe that my family and my relationships will reflect that. I’m scared and sad and tired a lot of the time, but I’m consistently hopeful. I have the opportunity, the support, and the power to change something I thought would never change. And as I come to the end of my college tenure, ready to approach life and work in a completely new way there, it seems a fitting time to leave behind this old shell of myself that no longer serves any useful purpose.

I’m sharing all of this because my intention is to be open and honest about mental health in a real, tangible way. I know I am not the only one who has a struggle. I know that other parents of kids with CF, people who have had toxic relationships, traumas, anxiety, and depression, have been here. I know that I am not an outlier, and I know that my openness and ability to put these things in to words is a gift I am both inspired and obligated to share. Admitting that I have a problem with these things is the first step, right? So here’s my admission. I own this issue. Going forward, I’ll talk more about my particular mental health struggles, trauma, anxiety, therapy, and my successes and failures. There’s no need to keep our human experiences shrouded in shame and secrecy, and I’m nothing if not a mouthpiece.

The Long Hot Summer (All By Myself)

2017-08-14T05:20:00.003-05:00

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.

Feely Words and Grief-Purging

2017-06-13T22:03:00.000-05:00

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.

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

2017-05-23T17:05:00.001-05:00

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.

Dumbass: A Story of Spectacular Failure

2016-08-23T20:48:00.001-05:00

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.

Another Long Hiatus...

2015-03-23T21:40:00.000-05:00

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.

Debridement and Nourishment - The Feeding Therapy Experience

2014-05-04T21:13:00.004-05:00

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.

Strong

2014-04-07T06:57:00.001-05:00

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.

Q & A

2014-03-31T22:39:00.000-05:00

Today we toured the facility that J will be living in for the next month while he undergoes intensive feeding therapy . We got most of our questions answered, and it occurred to me that I have been getting a lot of the same questions from folks, so it's time to answer some of YOUR questions. Here goes:

People with CF need a high calorie (at age 4, J needs as many calories as an adult man), high fat, high protein, and high salt diet. Because you can't just convince a baby or toddler to eat thousands more calories after they're full, Jacks had his G Tube placed when he was 15 months old. He gets an extra 1400 calories every night to help him grow and stay strong. A higher body weight for him means an increased ability to fight infection and a higher lung function. Yes, he still eats by mouth. But not much any more. Because he hasn't HAD to have the same oral sensory and motor experiences as other kids, he has slowly, at times, imperceptibly, stopped eating different textures, taking smaller and smaller bites, and progressed to sometimes just not eating AT ALL. Other factors in oral aversions can include things like the fact that he threw up for almost a solid month between November and December. Sometimes his meds might make things taste funny, or his sinus problems mean he can't taste well at all, or doing his vest made his belly feel rumbly. There are a lot of factors, a lot of possibilities. We can't rightly nail them down individually, but as a whole, they've pushed him into a cycle that makes your average picky eater look like Kobayashi next to him.

So what do we do? We go to feeding therapy. Behavior modification. We have chosen to follow the recommendation that Jackson move in to a children's rehab facility that specializes in this kind of problem and has VERY high rates of success. He will stay for a month, working with a speech/feeding therapist, Occupational therapist, physical therapist, and behavioral psychologist, in addition to a supervising physician. He will do actual mealtime therapy 4 times a day, for the duration of his stay. We will learn new tactics to cope with his aversions and encourage better eating habits. We will meet with the whole team every week to discuss progress, goals, plans, and any hitch in the gitalong. .

We are lucky to have family and friends willing to fly, drive, call, mail, fax, carrier pigeon, and teleport into town help us. Bet nobody teleports for you, do they? Well, don't feel bad. I might have exaggerated that part.

Other answers- yes, we would love and appreciate any help anyone is willing to give us during this '30 day challenge'. We just don't know what we're going to need help with yet. No, this is not an urgent hospital stay like we do at Cook's. There will be no IV'sor PICC lines, and we'll administer his daily meds ourselves, just like we do at home. No, he's not 'done' with feeding therapy at the end of this stay. But he will have a huge jump start, and we will have the tools to keep moving forward, and with a little luck and a lot of work, THIS will not be our biggest road block anymore. And we will be way tougher when we get to the next one. That's how it works! It doesn't get easier, you get better. A stolen quote I can't attribute to anyone because I saw it on Facebook.

OH!-and PS- I didn't have to copy or paste ANY letters for this blog. After I shared my keyboard drama in the last post, some wonderful, anonymous person came to my work and left an envelope with enough money to buy myself a spiffy new keyboard. I can't for the life of me figure out who it was, but THANK YOU. You made me and a few of my coworkers tear up. And I promise to both pay it forward and keep writing and raising awareness.

On Suffering and Sanity: an Impassioned Plea for All of Us

2014-02-23T23:05:00.002-06:00

Most of the people reading this have a connection to me. To my own struggles and strengths, and what I call 'normal'. I can only tell my story in first person. I can't tell you what it's like to be my son, my daughter, my husband, my family, or my friends. I struggle when I know that I cannot hide my pain from those who love me. I want to be stronger when things are harder. I want to comfort those who would worry about how I am handling the curve balls. I don't want what hurts me to spiderweb out around me. And I don't want to make what I feel the sole focus of my mission. I believe that whatever put me here, put me here because I have the power to do something to make it better. In some small way, what hurts me should make me able to help someone else who feels what I have felt. Helplessness. Sadness. Frustration. Anger. Guilt. Fear. And a desire to escape all of those things from time to time.

There was a time when all of those things bonded together and made me crazy. Let's get real. Genuinely crazy. There was a moment in my life where I didn't sleep for days, and feared the noises outside my window. There was a time when my affection for zombie movies made me fear that the undead were outside my window and I had to stay in pure survival mode and protect my loved ones from being eaten alive. But it was me who was being eaten alive.

I could have known that I was a carrier for CF. I could have had simple tests run that would have let my husband and I know what we were headed for when we chose to have children together. I made choices, that in the moment seemed so insignificant, that came to impact not only our lives, but those of everyone who knows, loves, and supports us. Things that I did without a second thought have caused pain and worry to everyone I know and care about. For the most part, I can understand that there was no logical or reasonable way for me to know that when those choices were made. But it doesn't stop them from continuing to impact all of us to this day, and from here on out. Guilt is not a feeling I'm a huge fan of. I do my best to let it go and treat myself like I would treat anyone else I love. But that hasn't always been the case. There have been many nights that guilt ate my heart out in the dark.

Recently things have taken a turn that has given me reason to reflect on guilt, the suffering of others, and my role therein. I have had moments to look at the pain of those I love and wonder how much better off they would be had they never given their love and trust to me. I toyed briefly with the notion, and even dipped my toes in the pool of 'crazy' once again. But god help me, I am not ready to dive in. And I hope I never do, because getting out is so damned hard.

So I am here to share what little I have learned. Things will happen to you that make you question your value, your worth as a human being. You will play a role, however unknowing, in the pain of someone you love. Sometimes there is no way to know. Sometimes there is. Accident, mistake, freak of nature, genetic defect, whatever. Chances are, you'll cross that bridge even as it burns, and there will be no way to go back to the way things were before. And you might go crazy. You might make promises you don't know you can keep. You might hurt yourself, and you might hurt someone who is trying to help you. The point being, here, that when you come to realize that the undead are not eating your brains, you have a chance. You have a moment in which to forgive yourself for anything you may or may not have done. You have a moment in which you can choose to pilot the ship rather than let it sink. In a moment where you can't help yourself, you might save you by helping someone else.

I've recently developed a mild obsession with the movie Silver Linings Playbook. The first time I saw it, I cried uncontrollably. And not because Bradley Cooper is just that gorgeous and so out of my league. Because I saw my reflection in the story. I saw how we are so vulnerable to our own crazy, how easy it is to become confused and mired down in suffering that stems from how deeply we love those around us, and how devastating it can be when that suffering derails all of our good intentions.

My plea to you is this. Please know that your suffering is not selfish. You are not simply feeling sorry for yourself. You are not powerless. You cannot change the moments that seemed so insignificant, yet somehow changed your entire reality, and maybe even that of everyone you love. You can't take them back. Fate can be a bastard.

None of it takes away your worth. You still have the power to make things better. You have the power to wake up every morning and tell your demons to piss off. You still have the breath to fight back. You still have a reason to care about what happens to you. And you still have people like me, just like I have people like you, to fight alongside when the days are dark and you're not able to do it alone. You don't have to ever do it alone.

At some point most of us live through that unrelenting moment that changes the rest of your life into who you were before, and who you are since 'it' happened. You might not know how many of us are standing on the other side. But we are here, and we promise, you do not ever have to be alone. Just raise your hand, and I will reach out mine.

bootstraps

2014-01-17T23:46:00.000-06:00

Preface- This post is very, very long, and as much as it pains me, I have to ask you to forgive the capitalization errors. My keyboard is broken, so every letter 'b' you see had to be copied and pasted in, and seeing as it took me over two hours to do that, I can't pain myself to go back right now and capitalize some of them.

AVOIDANCE

Instead of sitting down and writing this post, I laid down on the couch and took a short nap after getting Jackson into bed. However the nagging little voice inside my head wouldn't let me sleep. I've written maybe two blogs in the past year. I've spent a ridiculous amount of time wondering how much sharing I should do. How important is sharing our journey with other families, versus how important is it that Jackson isn't able to give me permission to share such intimate details of his life? As I sit down to bite the proverbial bullet, I have no idea what I'm about to say. Only that I've been quiet for too long, and it's time to get back to work.

And aside from that, we've spent what time we can having, what is to us, a normal life. And a not so normal life. but the emails started. And the postcards started. And then in the past few days, I have seen many of our fellow CF families launch their Great Strides fundraising campaigns for this year's walk. (Every year, we have a team for the Great Strides walk , benefiting the CFF to raise money to fight Cystic Fibrosis) And I'm unable to be passive any more.

Last year, we didn't do a big fundraising event like we usually do. As a matter of fact, I did little beyond the walk and online fundraising. As the years have gone by, our team has dwindled rather than grown. Our donations have tapered off rather than increased, and fewer people have attended our events. That is not to say we haven't experienced incredible generosity from or friends and family. It is always absolutely humbling to watch how people give of themselves, in essence, to save my child and his entire CF family. but the support we had in the first year of his diagnosis has trailed off, and my efforts to put together a successful fundraiser have likewise been met with dwindling enthusiasm. I hate to say it out loud at all, because I have had the support of some fantastic people to make it happen, but I feel like I've failed, and last year I let it keep me from trying again. I'm not sure what I'm going to do this year, but I'm about to tell you why I have to pull myself up by my bootstraps and try again.

I don't really want to talk about it. I don't like seeing it all listed in print. It makes me sad and scared, and my mom reads this, among other people who love me, And it hurts her and them to see me sad and scared. but truth is paramount, and the truth is…the last year has been HARD. Hard is relative, I understand. I've watched other mothers lose their children to this, and other diseases. My hard is not the only hard. but nevertheless, I am uncomfortable in the moments when I can't smile and say 'it's ok'.

This year in Cystic Fibrosis: (PSSST….THIS IS THE REALLY LONG PART)

Last September, Jackson got a sinus infection, one month after getting out of the hospital for the standard ten day stay. He did a ten day course of antibiotics, and the infection came back. He did another course of antibiotics, and a course of antibiotics with steroids, and then a longer course of antibiotics. The infection would seem at bay as long as he was on them, but within three days of completing a course of meds, his symptoms would flare up again. We dodged another hospital stay in December, and tried one last, long term course of daily antibiotics to give his body the chance to eradicate the symptoms on its own. As spring rolled around, he was still unable to function without the antibiotics, and we were also facing the fact that Jackson wasn't on track developmentally. The summer brought every kind of developmental test we could fit in to figure out what exactly was going on. Developmental pediatrician, hearing and vision tests, referrals to physical, occupational, and speech therapy, and the referral to an Ear Nose and Throat specialist for the snot that ate Manhattan. As far as the developmental aspect goes, we don't know what caused Jackson to experience delays. Statistically, children with pre-existing conditions that cause them to spend extended amounts of time in hospitals or undergoing extensive treatments for those conditions are more likely to experience these sorts of delays. Ultimately, the cause was not as important as helping him be the best HE could be, and live his own best life. He began physical and occupational therapy, and we paid our first visit to the ENT. The CT scan of Jackson's head made it clear that it was time to take action against the demons playing inside his sinus cavities. You might wonder why 'they' didn't take decisive action sooner? 1- because sinus surgery on a 3 year old isn't antibody's idea of a party. 2- a scan of the sinuses of a person with CF will almost always look 'abnormal'. We needed some more definitive evidence, before taking definitive action. His CT shows that the swelling of the tissues in his sinus cavities had not only completely closed them off, but had begun to push his eye socket out of place. One week before surgery, Jackson developed a seriously nasty form of bacteria called C Diff that threatened to keep him from surgery, and worse, stripped him down to about 32 pounds. We treated aggressively with probiotics and a different kind of antibiotic that would specifically target the bad bacteria, and were able to go forward with the surgery necessary to relieve his sinuses.

ON October 18, Jackson had surgery to clean out diseased tissue in his sinuses and remove his adenoids. His recovery was gloriously quick, and the three weeks that followed were fantastic. The best of our year. He ATE. I mean, he really ate. Entire helpings of nachos, multiple slices of pizza, whatever he could get in his mouth. It was like he could taste food for the first time in his life. The second week of November, he got a cold. It held on a little longer than a normal cold, but because he had just spent seven solid months on antibiotics and had battled C Diff as a result, giving him a course of antibiotics then was not the right call. Around this time he also began to throw up his tube feedings. Not every time, so we tried slowing them down. We tried giving him zofran to keep him from vomiting. His weight sunk down to thirty pounds, and his bmi dropped from the 60th percentile down to the 3rd. Every vertebrae stuck out. His hip bones were sharp. The back ridge of his pelvis began to protrude, and his elastic waist, skinny jeans wouldn't stay up. Not only could I see each rib, but I could see the outline of where each rib connected to his sternum. His collar bones stuck out, and his eyes were sunken in his face. I glanced a picture of what he looked like a year before and I sobbed. We consulted with his doctor and nutritionist and got approval to try giving him 24 hour a day tube feeds in an attempt to put some weight back on him. If he didn't do well, he would be spending Thanksgiving in the hospital. Over the weekend, 24 hour feedings and zofran managed to stack about 4 pounds back on him, and we were cleared to be home for the holidays. Jacks and I made a quick surprise trip up to Nebraska to see my folks. And he started throwing up again. In spite of the joy of being together as a family, my Mom's eyes would follow him around the room with sorrow. It was impossible not to see the worry on her face. And the day before we left to come back home, in the middle of a busy, noisy family gathering, my rambunctious child crawled into my lap and fell asleep, too weak and tired to play with the other children. He was spiking fevers around 103. I looked up the Children's hospital nearby to make sure they had a CF center and made a contingency plan for scenarios I didn't really want to consider. The next day we left early. Jackson slept 8 1/2 out of the ten hours we drove home. The following day was a Monday, and I knew we would be checking in to the hospital.

We had a bag packed as we went in to visit the CF center. As we waited to make sure a room was available, Jackson played and hid under the table, and didn't seem to feel as bad as we thought. I prepared myself for the standard ten day 'tune up' that helps CFers bounce back when they're just a little too beaten down to do it on their own. Two hours later, as we began to unpack our little suitcase in our room, he suddenly wasn't playful at all. He cried and crawled into his hospital bed, and he didn't get out of it for four days. His high fevers continued to spike. He continued to vomit. His white blood cell count skyrocketed. His blood pressure was abnormal. A small spot of pneumonia in his lungs bloomed into a full-scale war inside his chest. My baby wasn't in for a tune up, my baby was in for a fight. During his PICC placement, he was on 6 liters of oxygen. (that's a lot) He was in acute respiratory distress. There were x rays, blood draws, blood cultures, sputum cultures, vital checks every 4 hours, nurses with worried faces, and the fear that we were headed for the PICU if things didn't look up. As the labs rolled in, they confirmed that everything he was fighting was viral. Around day five his fevers stopped, and his whole body broke out in a rash. He began to eat a little, and slowly began to tolerate feeds. by late day 7, we had hope again. We managed to make it home on day ten.

In the month since we have been home, our main goal has been to fatten our little dude up. His tube feeds have supplemented him with 15000-1900 calories a day. And yet he's roughly the same weight he was when he was discharged from the hospital. We have watched his appetite turn to nothing. He has suddenly begun to have a total meltdown any time it's time to take his enzymes (which is at every meal and snack). He has also thrown up a couple of tube feedings, and spent over two days refusing to eat ANYTHING. We have an appointment on Monday, at which we will do some more digging and try to uncover what the hell is going on this time.

This has been one year in Cystic Fibrosis for us. A disease that progresses with age. I can't do nothing just because feel like my last efforts weren't good enough. I'm not fighting just because I don't want this for Jackson. I don't want this for your child. I don't want this for my friends. I don't want this for ANYONE. We are coming SO CLOSE to treatments that can give people with CF a 'Normal' lifespan. We are so close. Sitting in the hospital, watching my child struggle to breathe, watching the flesh shrink into bone, and we are SO CLOSE, but we are not there. We have to get there. And I need you to help me do that.

This is our Great Strides Team. Click through and join us. Help us. Ask your friends and your co-workers, your bar buddies and your golf pals, have a little contest at work. Shoot me ideas. You don't even have to be AT the walk to be on our team. but I am asking you to join us.

Hiatus...Part Thirty Seven

2013-07-08T23:47:00.000-05:00

This blog has been on my mind. Not all of the time, but regularly. I feel obligated to it, I carry it. I have had dozens of posts pop up in my mind over the months that I 'intended' to write, but never put into words.

Why?

I think the answer is multifaceted. Um...I know it is. So I'll just get to it and spare you any further BS-ing.

On a positive note- every moment of life isn't about CF anymore. We have come to terms with how it makes us and Jackson different. We have problems and complications completely unrelated to its role in our family. We're thankful that it doesn't dominate every waking moment. We're also thankful that in many ways, it gives us the gift of being able to see the value in the mundane. This is freeing! There's a big sense of being able to move on with our lives as a family. To accept the hand we're dealt, and by God, pound out some happiness both because and in spite of it. All good and fine, but if I've shared our woes and the fear and sadness, why should I not share our triumphs and successes?

On a scarier to share note- I have a hard time connecting with other CF moms. Over the past three years, I've made and kept contact with a few. I joined a couple of social media groups, but can't bring myself to interact much. It drives me crazy. I get judgy, I get irritated with what I think they *don't* know, I get annoyed with questions I shouldn't get annoyed with. And by 'get judgy'....I mean I think they're dumb. Before you nail me up, hear me out. I know this ISN'T because they're dumb. I know that it's really MY problem. I don't want to see myself as one of these people, facing this life, with so many questions, so much uncertainty. We have reached a point where CF is something that is part of our everyday life. All the drugs, all the treatments, all of the headlines about transplant laws and the deaths of young patients and drug breakthroughs, I tell myself that's just how it is and I can take it all in stride. That's a double edged sword. One can't go about day to day life FEELING all of the feelings that come along with living life two steps closer to death than everyone else I actually know. So I manage to remove myself from it. I'm glad that I'm able to realize that, and it's not really something I'm proud of. But it's kept me from engaging the way I used to and sharing our story.

And as always, we've been busy. M & I have both been in school. I went to Massage Therapy school and opened my own business(!), and M is on a path to a nursing degree right now. I've always been a circus act, but juggling was never my strong point. It's not one of my best attributes that moving on to new things frequently means leaving behind things I didn't really mean to leave behind. I'm always in search of a way to do everything, and as soon as I realize I've left behind something I didn't mean to, I drop something else to pick it back up. Now, no one can do everything. All I'm saying is, I have a short attention span, a hard time prioritizing, and a tendency to WAY overcommit myself.

So for the tenth time, I'm here to say..Oops, sorry. If anyone still reads this site, I'll be trying to share more. It may be more the life of a family with CF than coping with the diagnosis of CF. It might bore you to tears. But I'm going to give it a shot either way.

In love and light,

Amy

2013 "Top of Our Lungs" Announcement

2013-03-22T19:51:00.000-05:00

Well hey there. Good to see you again. I'll give a brief update on all the happenings since I last checked in with you lot, but I'll have to do it another day. Today there's business at hand. I've been putting off this announcement for a while. I've been feeling a touch defeated by it, or rather, it makes me confront the fact that I am forever taking on more than I can handle, somehow believing that sheer willpower will MAKE EVERYTHING WORK! We were planning to have our fundraising event next month, another live music and art auction shindig to raise money for our Great Strides walk for Cystic Fibrosis. But I haven't been available to put in the hours in order to set things up, generate interest, grab sponsors...April and May are just not going to happen for us this year. I just don't have the firepower to pull it off, and I'm not going to half-ass it. However, I'm not waving a white flag. In truth, it doesn't matter WHAT time of year we raise money. It's all going to the same place. I frankly don't care about being the biggest fundraiser in my area or earning prizes or any of that. What I want is to establish an annual event. One that people look forward to and truly enjoy. I feel like we're lacking a sense of identity and excitement, so I'm searching my brain for what we should do that is US, that represents our fight and our fire, and makes other people care about the long haul work against CF. So I've got my work cut out for me, and am aiming for June-July right now. This DOES NOT mean we aren't doing the Great Strides walk, though. We'll be meeting up at Six Flags as usual, and meeting for lunch at Twisted Root Burger Company afterwards. If you are looking for ways to help us fundraise this year, let me know. If you have ideas for how we can better fundraise, let me know. If loved or hated something we've done in the past, let me know! I need some collaborative brainpower. As soon as I can nail down some names and dates, I will officially announce what this years fundraiser is going to look like. Thank you for the continued support, and bearing with me through the less-than-organized state of things at the moment. Amy

If Absence Makes the Heart Grow Fonder

2012-09-11T22:18:00.001-05:00

...You should be IN LOVE with me. I have not blogged since May 10, ten days before our benefit party. I haven't updated with all the great pictures and thank you's and I haven't shared how much we raised to fight CF this year. And on one hand, yes, I feel like an ass. With so many people giving their time and money, I should have been Johnny-on-the-spot with all of that. But alas, I have been afflicted with Good Samaritan Burnout.

I feel like it's making an excuse, but after the benefit was over, I just had NOTHING left. I stayed home and didn't talk to anyone for the next two weeks, didn't blog, didn't post on J's Facebook, lost the USB port to import the photos, and just kind of seceded from all of my advocacy and fundraising. And you know what? I'm giving myself a pass on that. Because I want to continue the work . I want it to be an ongoing and integral part of my life, and sometimes that means I am going to take a sabbatical and regroup.

I still have pictures to upload, and they are great. But I need to locate my cable or get a new one, so...not tonight.

This year we raised $6,544 for the CFF. $1,700 of that came from the Top of Our Lungs event. The rest came from people who cared enough to give their time and money, host bake sales, talk to others about CF and why they were out schtumping for change for this cause. We raised a lot, we learned a lot, and we're excited to bring it back again bigger and better this spring. I also promise to bring a full blog post with pictures very, very soon.

After the benefit, I stuck my head in the sand and decided the summer was going to be dedicated to just living. And so we did. We even managed to squeeze a vacation at the beach in again, and just as summer had turned us into stressed out, growling, sweat zombies, we were restored by the sound of two munchkins running screaming into the surf, and the taste of shrimp netted just hours before. That, my friends, is my definition of bliss.

Em started fifth grade two weeks ago. (You're so right, I don't look old enough to have a fifth grader! *wink*) She's doing wonderfully and really seems to be coming into her own. Jackson started preschool last week, and oh BOY does he love it. He only goes for three hours a day, which is a wonderful introduction for both him, and his teachers- who I'm afraid were slightly terrified when they read his medical rap sheet. But they've bonded to him quickly, and he to them, and I couldn't be more pleased. I'll also do a full blog on our decision making process and sending him to preschool in the next week or so.

My invisible friends, in writing this I realize how much I've missed you. I'm glad that I'm mentally rested enough to return to purging my thoughts here, and I hope to have some good stuff to share in the coming days, weeks, and beyond. Thanks for having me back.

Progress, Lip Service, Butterballs, & Benefits

2012-05-10T21:17:00.000-05:00

So much going on here in our world, and it's all good! Jackson had a checkup at the CF Clinic this week, an dthe news was almost all good. His lungs sound great, but he's stopped gaining weight again. We started him on a new, higher calorie formula, and Periactin (Cyproheptadine) as an appetite stimulant. They said it would either work or it wouldn't, and we'd know in about 24 hours which way it was going. 3 days later, I'm proud to announce a nearly 2 1/2 pound weight gain, and a toddler who's now constantly asking for food and drink! It's wonderful to see him chow down with gusto. He'll visit again in a month to officially weigh in, and I'm hoping to wow his dietitian with official 'Butterball' status. Mike started his new job this week, at none other than our own Cook Children's Medical Center. It's a wonderful place to be a part of in a whole new way, and I'm so happy to see him not dreading getting out of bed for work each day.

The majority of my time right now is being spent getting ready for our annual fundraising benefit, which will follow up our Great Strides walk on May 20. We are proudly hosting the Top of Our Lungs event to benefit the Cystic Fibrosis Foundation at the Magnolia Motor Lounge, starting at noon that day! We have collected (and are still amassing) tons of donations from local businesses and artists to be raffled off at the event. Check out the new tab at the top for a full list of prizes to be won! There will also be live music from local favorites Greg Schroeder, Jake Robison, and another guest (TBA), face painting, and an appearance and hosting by one of our favorite radio personalities from 1310 The Ticket Sports Radio! The admission is a $10 donation, and every guest gets a raffle ticket with admission. The best part? You can pick and choose which prizes you want your raffle to go towards.

We've been busting our butts on this one, and I'm REALLY hoping we can rake in a bit for the CFF. FOr those in the CF world, it's all old hat, but this money is desperately needed to find better treatments and keep our loved ones with us. Fundraising is hard, and sometimes- I'll be honest- it can be a beating. When we began two years ago, we did it because we needed something to cling to, something to make us believe we wouldn't lose our child to this disease- something to do to actively fight back. But the nagging thought in my mind was 'when was the last time fundraising cured a disease? Am I making any difference at all? Is this false hope?'

The answer? Hope is a real thing. The drugs in development RIGHT NOW have the potential to change the lives of people living with CF in ways we haven't really imagined. This press statement was released this week, in regards to a the clinical trials of a drug combo that is targeted to treat the underlying defect of Cystic Fibrosis in Jackson's specific mutation of the disease. It's been in development for years, and now it's testing so well that they want to accelerate the trials and move toward FDA approval. One of the drugs, Kalydeco, is already on the market and making a huge difference for a very small segment of the CF population. The approval of this combo would affect a much, much greater number of people, and will help lead to drugs and treatments for other mutations that have yet to benefit from the current drugs. It's not a 'cure' in the traditional sense. But it is the single greatest piece of hope right now for people with CF, and those of us that love them. It's real. It's real, and it's happening, and we actually have the power to push it along. There is no federal funding for this research. There's us. So if you've ever had that nagging feeling that you're just paying lip service to this cause, quell it. Tell it to shut up. We're fighting together, every day, and it is making a difference. Do what you can, and know in your heart, that you helped.

Making the Best of It

2012-04-16T23:15:00.002-05:00

We're still plugging along. Jackson has fully recovered from his drug reaction, and it's easy to look at him and convince myself he was never covered in welts and fever and angry purple streaks that scared me half to death. Interviews are rolling in for Mike, and we are hopeful that something will come together by the end of the week. Cross your crossables!

More good news is that our CHIP application was approved in under half the expected time and we know that Jackson will not have to endure another lapse in health coverage. I actually couldn't believe it when the letter came and made Mike read it with me about four times to be sure I was getting it right.

We have done our best not to spend the time in limbo idly. We went to visit my family in Nebraska for Easter- a rare treat, since we're usually lucky to see them once a year. Then we trekked down to Austin to visit Mike's family, and now it's back to domestic chores and organizing our benefit for next month. I'm still equal parts horrified that nobody will show up and that I will drop the ball and be unprepared. Something about experience being the best teacher and all that, right?

The proof that we've learned and grown in the past few years is this: we're still here! We aren't madly depressed or cowering in a corner waiting for the sky to fall. This is another dip in the roller coaster, but it seems we know that the track will always go back up. Maybe I am learning to deal with the ebb and flow of the fates just a hair better. Stranger things have happened.

Our Friend Murphy

2012-04-01T11:06:00.007-05:00

Murphy's Law. Or tempting fate, the Laws of Physics, or whatever you want to call it.

Man did we work hard to get off of Government aid and get our own health insurance. Our singular focus over the past two years has been to get ourselves in shape and be financially independent and responsible. When Mike had insurance, everything was very calm, no IV's or hospitalizations, 6 months without even oral antibiotics. And through the forethought and generosity of his grandmother, we also came to have an emergency savings fund in place. A little golden light shone down and it was like we were almost Responsible Adults.

When Mike lost his job I immediately began looking into every option to keep Jackson covered that I could find. Our social worker recommended we apply for Medicaid, and so we went down to speak with the financial counselors at the hospital to help us do just that. I had every piece of documentation they might ever need, an already completed application, extra copies of everything...I was well prepared. Imagine my disappointment when I was told that having money in a savings account disqualified Jackson from eligibility for care. If you have more than $2,000 to your name, you're automatically out. Which to me seems absurd, $2,000 would be wiped out in one ER visit. And if that were everything we had to our name, we would then be unemployed, penniless, and without health coverage for our sick kid. My face was hot and red and I couldn't make eye contact with the financial counselor. I really wanted to yell about how stupid it is we should be punished for doing our best to be responsible. That small savings account is what we're living off of. It wouldn't buy two months of COBRA coverage, but it disqualifies us from assistance. I wanted to punch something.

On the other hand, I feel like a complete ass for being such a whiner about it. And it's odd to be in a place where I really do WANT to complain about it. Usually I'm pretty good about just moving on and finding other ways to do whatever needs to be done, but I just wanted to stand there and have a temper tantrum. "But we did everything right! We did everything we were supposed to do when we could and now we need help and you won't give it to us!" Maybe I even wanted to yell, "That's not fair!" But I'm lucky enough that my mom taught me it doesn't matter what's fair, it matters what is. Work with what you've got. So as our (and by our, I mean Jackson's, we'll go without until Mike gets a new job) health care hangs in the balance, our social worker assures me we've got other options to look at, and I am applying for them all at the moment. I attempted to shake off my perceived injustice and move on.

This was Friday. The next morning- yesterday- at breakfast, I lifted Jackson's jammies up to put his antibiotic into his G Button and noticed what appeared to be three bug bites on his knee. In the time it took me to wonder aloud what had caused them, two more appeared. By the time I had washed off the syringe the antibiotic was in, another half dozen had popped up and I was confusedly trying to wrap my head around the lack of bugs present in this phenomenon. Minutes ticked by and both of his legs became covered in hives, steadily creeping along his body.

Now I've always said, we're the people who are in a good position for bad things to happen, and here's a classic case. Remember how I've mentioned that Mike's folks are in medicine? Well, his mom, who lives 2 miles from us, just happens to be a practically world famous allergist. Dr Grandma does fabulous house calls. She confirmed that there were no mysterious invisible bugs, and in accordance with my fears and suspicions, this is most likely a reaction to his antibiotics. We got some Children's Benadryl and headed toward nap time with some trepidation.

Before I go on- why am I so bothered by a possible antibiotic sensitivity? Here's my not perfect, but not totally unreasonable train of thought. Mike is pretty darn allergic to MANY antibiotics. My mom, and I *think* both of my brothers are allergic to penicillin. It's fairly likely Jackson will have some sensitivities. Why does that bother me? Because I feel like it's eliminating possible treatment options for future respiratory infections. I know many CFers develop sensitivities or resistance to antibiotics through the course of repeated exposure, but I was hoping we'd have a few more years of the old tried and true Bactrim doing the trick before it was out of the running. I worry that if he has wide spectrum allergies like Mike than moving to less common antibiotics to treat him now will eliminate many options for him down the road. I know that this isn't exactly the case, but it still sticks in my craw and has apparently made me pretty cranky about the whole thing.

Moving on- When Jackson woke up from his nap, his entire neck and chest was one giant, angry, red weal. His torso was whelping up in spots now, too, as well as tender places like armpits, behind his ears, and behind his knees- and it was starting to itch some, although in general he was pretty happy. We repeated his Benadryl dose and waited a little longer. It just kept getting worse. By bed time his entire torso was one hot, tender whelp. a red line had crept up to his chin. He was turning solid red from the bottom up, like a thermometer about to burst. He had full body shivers from the sensations, and would periodically try to scratch every red spot at once, twisting his arms behind his head in a frenzied attempt to relieve the maddening itch. An oatmeal bath made him scream. Topical relievers made him scream. He would fall asleep for a moment, only to be startled awake by the crawling sensation under his skin and scream some more. I was relieved when Mike's mom checked in on us again and came in with bigger guns blazing. After some steroids, a higher dose of Benadryl (under the care of a Dr, not something to try out on your own!), Zantac- which helps the Benadryl be more effective, and three hours of rocking, consoling, and crying, he FINALLY went to sleep.

Mike & I didn't sleep so much. Between taking turns giving meds and just checking to make sure he wasn't getting worse, we maybe split three hours of sleep between us. But lo and behold, this morning my boy isn't a 28 pound hive. Woo!! I was exceedingly happy to see that about 75% of the hives were gone, and the mass redness from the neck down had returned to a normal color and texture. A closer inspection under his onesie revealed some nasty looking bruising across his back, where the previously swollen skin cells had filled with blood. I'm told the fancy word for this bruising is Ecchymosis. (Not petechiae, like I initially called it) He kind of looks like someone threw him down the stairs. His legs are having a breakout at the moment I type this, but overall it appears his condition is still on the up & up. A long phone call with our nurse is in order at the open of business in the morning, then we'll sort out where to go with all of this.

I feel better this morning than I did last night about all of it, but I'm still nonplussed. I'm used to respiratory illness. I'm used to digestive problems. But this was new, and not expected, AND I felt completely impotent watching him struggle for hours and being completely unable to relieve his discomfort. And on top of that, I was having a mental tantrum of "Of COURSE this happens when our insurance runs out! The whole time we had it he was healthy and everything was calm, of COURSE the shit hits the fan now!!" Well, excuse the voices in my head for their profanity, if you will. And understand that I know very well that this is NOT the shit hitting the fan. In a global CF sense, this is a *blip*. It's just inconvenient, and ill timed. But frankly I don't know anything about Cystic Fibrosis that is well timed or convenient. The past two days are just a reminder that we should appreciate the health and health care we've had, and keep fighting and working for more. What's fair doesn't ever matter, and it's rarely how the game plays out. It's much more important what we do with what we have than what we think we should have had to start with.

***Please excuse my less than stellar cell phone pics. It's obviously time for me to start using a real camera again.

Keyboard Therapy

2012-03-15T21:40:00.005-05:00

Once again I have been neglecting my poor blog. And once again, big changes are afoot.

I'll begin with the blessing in disguise that we're working on. A week ago, Mike lost his job. It's an unnerving and uncomfortable place to be, but with all of our might, we are holding to it being a hard shove in a direction we already wanted to go. Even though we are in a better place than we've ever been to face a challenge like this, it's hard to wake up and feel each day like it's going to be okay, and is indeed a blessing in disguise. We're not spending the time idly, in fact productivity is at an all time high, but to say we're out of our comfort zone would be a grievous understatement. It's deductible season, so the medical bills are rolling in like high tide ocean waves, and the word COBRA comes with an intimidation factor all its own. I've put in applications for CHIP and Children with Special Health Care Needs programs to try to soften the blow and first and foremost, make sure Jackson is never without the life saving medications he goes through every day. We know we will not have to let him go without, but after such tremendous effort to get to a place where we could ALMOST handle all of our own business, it's salt in the wound to be virtually back where we started. My husband gave until it hurt- to the tune of 100 hour work weeks- to make sure that his family was provided for, and the proverbial rug was unceremoniously yanked out from under him. Thank you, GG, for your years of prudence that have been the pillow on which our asses landed when this happened. Let's just hope we can get this behind us without having to exhaust that resource.

But on to happier stories, we have also had much to celebrate.

On Sunday, Jackson turned two. And once again, every cliche about time and how it seems to accelerate as we age seems poignant and deep. We didn't have a big party, since Emily is out of town on Spring Break with her dad, and we really don't feel like it would be right to celebrate without her. But it was a beautiful day nonetheless. I made him bacon for breakfast in the shape of a two, about half of it when in him, and the rest was used as his special deep conditioning hair treatment. (I don't use bacon as a hair treatment, but Jackson seems to think it is the essence of youth and vitality and loves to rub it into his hair). Cake, balloons, and gifts rolled in, I cooked him his favorite dinner - Braised beef and sausage ravioli with meat sauce. He didn't disappoint, and ate an impressive amount. His excitement at having a cake presented with song was so entertaining it made it difficult to warble out my off-key version of "Happy Birthday to You", but in the end, he decided cake is a poor substitute for ravioli. I was a little disappointed to put him to bed that night, but he cuddled sweetly and slept quite soundly- the celebration for him, after all, was neither small nor subdued. I wanted to write a beautiful, prose-y reflection on how the joys of having him for my son outweigh the fear and heartache of his having CF. But alas, I fell asleep myself before sitting down and hammering out the words.

My son. My beautiful progeny, my Achilles offspring- brimming always with joy and fire and endless, boundless curiosity. The child who would have us well acquainted with the ER staff perhaps even if not for Cystic Fibrosis. He's spending the days right now with his foot wrapped in gauze bandages, trying to heal the wound borne of fearless exploration (of an antique marching band instrument that sadly found home for a sharp edge in his soft flesh). Unafraid to climb, to open, to fall, to jump, to peek, to run, and to deconstruct in hopes of learning how anything works. Who often tires me because his nimble fingers, agile feet, and bottomless curiosity are inexhaustible. Who has learned that the world doesn't stop when he is tired, and thus fights sleep like it will steal his soul...unless you play Mumford & Sons. Then it's endless cuddles and talking himself to sleep behind the plastic mask that bubbles up pulmonary preservation and leaves a tiny moustache of condensation on his upper lip. Only at bedtime is he now a baby, softly nestled under my arm, tucked tightly into whatever blanket is light enough to keep him from soaking us both in his salty sweat. Legs dangling over the arm of the big blue chair, feet tapping in secret rhythm until he begins to dream. Only in sleep is he now my baby. My pride in being his mother wins out over the melancholy at how quickly the baby time is over. Having real conversations with him and hearing his opinion on everything he sees is a coveted prize, not consolation for how quickly first words and first steps fall behind us. Watching my children grow and become 'people' is its own reward, and makes the fear, doubt, and confusion on just how one is supposed to raise a child seem so trivial in comparison. I realize at the passing of 'Two', how quickly each birthday will come and go, and how each passing year he will need less and less of me in order to find his way in the world. And I don't say that with sadness, because we begin our children's lives in hopes of making them able to live them fully and well without us. From day one, we are training them to be without us. And so it goes my son, my beautiful progeny. Just know that as it is now, I will always be there should you fall.

The Top of Our Lungs

2012-03-06T21:16:00.003-06:00

I'm thinking of this for the name of our fundraiser this year. We've decided that instead of dozens of little ideas to bring in a few bucks here and there, we're going to do our Great Strides fundraising party style and throw a big benefit with music and an art auction and some great raffle prizes.

Our Great Strides walk is on May 20 this year, and directly after, we will head over to see our wonderful friends at the Magnolia Motor Lounge, who have generously agreed to host our shindig. The party will kick off at noon. There will be lots of fun local bands (TBA, stay tuned!), an art auction from local and national artists, and some great raffle prizes. I'm kicking around the idea of a washers or horseshoe tourney, too. We'll see how it comes together.

I'm so excited! And- really, really nervous. This is a big undertaking, and one I don't have any experience with. Basically, it's going to entail me stepping out of my comfort zone and asking all the people I know, and a lot of people I don't- to donate their time, goods, and services to our cause. In the name of funding the fight against CF, I can do that. I am a little scared that I can't pull it off, that people will tell me no, or that no one will show up. But at the same time, I'm the kind of person who sees a big opportunity for growth and for service and wants to jump out of my comfort zone to achieve it.

But then there's always the reminder of WHY we (the collective fundraisers of the world) choose the uncomfortable role of being the ones with our hands out. Asking people to give of themselves is HARD. And I never feel that my gratitude is enough to show them how much it means when they come through. The feelings that accompany this 'job' are heady. Remember why we're here...the hole in his belly...the scars on her lungs...the transplant waiting list...the lost children, husbands, & friends.

My friend Rebecca over at the UltraViolet Rock & Art Show (and the main inspiration for our benefit format!) made this video recently that I've been wanting to share, because it reflects so much raw emotion that lies just below the surface for me, too. The link will take you to the post called "Just a Mom". I was going to just post the video here, but the blog post itself needs to be read along with it. Sometimes we take on the role of the public voice of our cause, and we get used to sharing the personal things. We get used to telling the details of our child's disease, the pain, the procedures, the daily rigors of a CF treatment regimen. It becomes 'normal' for us. But every now and then something touches nerves we thought we had somewhat protected, and the heady emotion that is mostly kept in check boils over. Right now that something is the testing of drugs that can correct the underlying defect of Cystic Fibrosis. They're right there...just beyond our fingertips. So close we can taste it, and yet not quite ready- while our kids and friends and lovers are going to the hospital, being put on the list for a lung transplant, and dying, while we wait. And that part is still very hard to share. We are still the parents of children fighting a fatal disease. That's why we do whatever we can to bring in the money so desperately needed to find and make the drugs so that people with CF can LIVE with their disease rather than die from it. That's what makes it worth it to put my ass out there and ask people to help.

With any luck, I'll be able to make it fun enough that people want to participate.

And so on, and so on...

2012-02-18T23:00:00.003-06:00

Here we are again. Jackson had his quarterly clinic last week, and I couldn't have asked for a better visit. The mild winter and his now five month long streak of NO antibiotics has been amazing, but left a little piece of me wondering if somehow we'd be ambushed with something unexpected at our visit. But as the appointment progressed, it became clear that we were in the midst of a celebration day. His lungs sound great, and his height and weight have stabilized and are on a NORMAL growth curve. Until now the lines on the chart have looked like someone gave an etch a sketch to a drunk and asked them to draw the Mona Lisa. But now, we are looking at a steady, gently upward sloping set of lines that are almost parallel. 77th percentile for height, and ....wait for it.....50th percentile for weight! Jackson dropped below that level around August of 2010, and by the time he got his G Tube, he was under the 5th percentile. Even with the tube feedings, it has not been an easy road back. But his health has undeniably improved since then and I can easily say we're at peace with the decision. This was also the first time we made it from one regular check up to the next without a sick visit. I'm not counting the broken G Button trips to the ER, because those were mechanical errors, not illnesses!

So all in all, things here continue to be on the up & up. I remind myself each day that even if something happened and Jackson had to be admitted to the hospital tomorrow, we still made it five solid months with no illness, and that's a triumph regardless of what happens next. I'm finding now that I struggle with being able to really enjoy the relative peace. It's frustrating sometimes, the rare moments come along when there is nothing looming over our heads, and I know that all I want is to enjoy that moment for as long as it lasts, but sometimes I can't. When the unexpected becomes the norm, the habit of expecting the unexpected becomes hard to break. But it's something I'm working on. I read an article recently titled "Don't Carpe Diem",and while I truly get what the author is getting at, I also wholly disagree. Yes, there are a lot of hard moments. There are times I don't want to do it, times I feel pants-on-head crazy. But I embrace those moments, too, because without them- without the hectic, harried, redundant nonsense- there are no 'Kairos' moments. Because that's who I am. I feel EVERYTHING. All the time. But I live in each moment, because the next isn't promised and the last is already gone. But at the same time, after a few years of living in a cycle of love, fear, joy, pain, that CF brings, it's hard not to always feel the fear coming back on when the joy sets in. What I'm hoping is that I can learn to embrace the joy, even when I know fear may be just behind it. So today, I chase my healthy, happy, and very loud kids around, and instead of asking them not to yell in the house, I crank up the music and yell with them. Like a receiving line, I can only shake one hand at a time. And today I shake hands with joy.

Heavy and Light

2012-01-31T22:15:00.007-06:00

I've been meaning to post about several different things this past week. I normally don't like to put several topics in one post, but for the sake of time and actually sharing the information, that's just what I'm going to do.

Don't Push the Button (or pull it!)

Jackson's favorite time of day is Naked Time. The few minutes after bath that I let him run free and au naturale after his bath, where the patter of little feet are accompanied by his adorable naked butt disappearing around every corner in the house and squeals of delight at the freedom of the air rushing past his skin as he wears himself out at the very end of his day. Last week, Naked Time was punctuated by the horrified shouts of his sister when she found his G Button laying in the middle of the hallway, followed by a drippy little trail of half digested ravioli from dinner. The answer to the question I've been asked a hundred times- "Can he pull it out?', was clear. It's not easy, but apparently yes, he can! She was a trooper once I calmly told her it was OK and we would just put it back in if it was still in good shape. Luckily, it washed off and re-inflated in such a way that we did just that. Em bravely played spotter as I lubed the little stoma and applied gentle pressure until it slid back into place, re-inflated the water balloon anchor, and tested our triumph with a few milliliters of water flushed through it. We called the CF clinic in the morning to make sure they didn't need to check it, and took pleasure in the shock and awe of friends who seemed to think this was some heroic act.

Two nights ago, as I was prepping all of the meds for our bedtime routine, another call to arms was issued by my nine year old as she discovered the wily button hidden underneath the ottoman in our living room. It couldn't have been out long, maybe fifteen minutes, but it was apparent when I tested the balloon that two times was the charm to deforming the inflatable anchor that holds the button inside his belly. I tried to replace it long enough to take him to the ER for a new one so the stoma wouldn't begin to heal, but it was already too late. Emily was crying and afraid to go to the hospital. Luckily we have an awesome set of friends, and my best Dude Bruce was only a phone call away. Within ten minutes he was at the door, ready to hang out with her so she didn't have to go along for what could be several hours of things she's scared of. Again, I sing the praises of Cook Children's Medical Center for what can only be called their Ultimate Awesomeness. Having CF means never sitting in the Emergency waiting room, exposed to the glut of contagion that accompanies emergent care. And when I told them his stoma was already closing up they were so fast getting us back to a room that I had to do registration and check in after the fact. Our entire visit from entry to parking validation lasted a mere twenty seven minutes. I'm pretty sure that's some sort of record for an ER visit. I still may call Guinness. The door hadn't even closed before a team of three nurses pulled in with a new button and all the necessaries for putting it in. They placed a narrow rod through the tube to give it enough stiffness to navigate the narrowing fistula between Jackson's belly and the outside world. Next, I learned why there were three nurses instead of just one. It wasn't pleasant. The button wouldn't go back through the stoma, even with the aid of the rod to bolster its strength. A glance was exchanged and and apology given with "I'm sorry, we're going to have to dilate it." I don't know what exactly that entails, but the prefacing apology made my heart sink. As they prepared to retrieve whatever equipment was needed for this loathsome chore, the head nurse decided he needed to try one more time before resorting to stronger tactics. One nurse held J's legs at the thigh, and the other held his arms above his head at the armpit, so that they could stretch his torso out as much as possible. The head nurse re-lubed the stoma and button and used deep pressure to try to coax the button back in place. Jackson looked up at me while he cried out, tears running down his face and dripping onto the paper covering of the exam table. This part sucked. But ultimately it was successful, and soon I was able to scoop him up and hold him while he cried. Which wasn't fun either, but was an improvement over being held down. The doctor came in and I was delighted to see she was a family friend! Even at our home away from home, a truly familiar face is a genuine comfort. We were dismissed with medical orders that included having J's surgeon order a spare button for us to keep at home (yay!), and to wear a onesie at all times. So long Naked Time, we're sorry to see you go, but not as sorry as we would be to have to force that button back where it didn't want to go again. Jacks was pretty sore that night and couldn't sleep, so ultimately I gave him a light dose of pain medication. He was finally able to doze off once it kicked in, and I had a fairly large glass of wine before the day took its toll on me and I finally fell asleep.

In sharing this story with family and friends, I learned that as well as grossed out and intimidated, people are very curious about the mysterious G Button. With the second annual Tube Feeding Awareness Week coming up, I'll be sure to post more about the inner (and outer) workings of the little silicone miracle that helps my baby grow.

Kalydeco Day

VX770. Ivacaftor. Kalydeco. EVERYONE in the CF community knows these words, as we've all been anxiously, cautiously, and hopefully waiting for this day. Today the FDA approved the use of the first drug to treat the underlying cause of Cystic Fibrosis. It is groundbreaking, life extending, life giving news. I hate to follow a statement like that with a but, BUT- this particular miracle is approved and targeted towards the rare G551D mutation. This is not Jackson's mutation, but we are still overjoyed and celebrating. Something real has happened to show us that hope is a tangible thing. It's not just a dream we cling to because we have no other choice. It's concrete evidence that our day is coming. But when? Who will still be here waiting when it does? What happens between now and then? To say it's hard to wait is like...I don't have an appropriate hyperbole. I just don't. In my short two years living wit the realities of CF, I have learned more than anything that the miracles and the tragedies each serve to highlight the striking contrast of each other. Each life renewed by a successful lung transplant points out the tragedy of each life lost while waiting for one. Each joyfully celebrated birthday is sweet because we remember those who won't see another. Each hug, each kiss,each day with my children and every mundane task in a day is painfully sweet because I can never be unaware of all of the people who never got those days with someone they loved. It's impossible to celebrate this victory without understanding the losses endured to bring it about. I highly recommend paying a visit to A Matter of Life and Breath for a much more succinct (and frankly more qualified) take on this emotional moment from Piper Beatty.

I'm lost for a clever and thoughtful closing tonight. As is so often the case, my heart is at once heavy and light. Love to you for being here to share it.

Baby No More-- The True and Shocking Tale of How My Baby Disappeared and a Little Boy Came to Live in His Place

2012-01-13T23:24:00.007-06:00

It's officially official. Jackson is no longer a baby. An expert at making his independence and resourcefulness known, Jackson has defeated one childproof safeguard after another. He'd make an excellent addition to a security team, showing them where every weakness in their system is, and that's just what he's done for our new house.

Breaking in, climbing out, extricating kitchen utensils, absconding with keys, and locking himself in rooms are among the clever little man's favorite pastimes these days. To be honest, aside from the natural concerns for his safety, I feel nothing but glee from seeing his little mind at work. This resourcefulness and determined nature will serve him well, and I never tire of watching his gears turn until his problem is solved. There is- or I should say was- one thing I held my proverbial breath and hoped wouldn't happen too soon.

I should have known the day before. I sat on the couch catching up with a dear friend, and we both watched as Jackson tried to open the back door to go outside and play with his sister. About a foot above his head, the bar lock that swings down like an arm and locks into place to prevent the door from opening held its ground, refusing him entry into the great beyond called 'the backyard'. I was momentarily surprised when he quickly gave up on his escape and toddled away. My surprise faded immediately when he returned a moment later with the broom, and willfully used the handle to extend his reach and deftly push the bar lock up and out of the way. I should have known then, that no crib could hold him.

The next morning I really, really needed to have the morning pee (sorry, thems the facts) before I got him out of bed. I heard him rouse and chatter as I walked past his room, but asked Emily not to get him out of bed until I could use the bathroom, and stepped in and closed the door. No sooner had I begun than I heard Em say "Did mommy get you out of bed?" and the sound of TWO sets of feet pattered down the hallway. Incredulous, I emerged from the bathroom to see Jackson standing proudly in the hallway next to his big sister. Somehow, stealthily, soundlessly- without a thud or a thump or a snag- he had scaled the vertical bars of his crib and descended to the ground like some hybrid ballerina-ninja-spider monkey. I was impressed, but suddenly worried. His act at the back door filled my head with visions of his silent escape to the yard during the wee hours of the night, while I slept unknowingly through his Andy Dufresne antics. If he wouldn't stay in his crib, and he could unlock the doors, HOW CAN I KEEP HIM SAFE??

We converted his crib to a toddler bed the same day, a blissfully seamless transition, and ultimately turned the lock on his bedroom door around. Yes, it now locks from the outside, and I hate it. But he is always asleep when I put him down, I watch him on the video monitor, and I unlock the door as soon as I wake in the morning, so he never feels scared or trapped in his room. Feeling slightly better about his security, I began to lament the end of the baby era in earnest. Before long I'll be begging for cuddles that he's too busy exploring and learning to give. It was a huge symbolic moment, another neon sign of an indicator that we are at a great turning point in our lives, yet again.

That day Jackson napped late into the afternoon, and therefore wasn't completely ready to be asleep when I laid him down for bedtime. I had no idea how he would handle the 'big kid bed' alone, so I knelt down beside the bed while he adjusted to the lack of a 4th wall between himself and the freedom outside the bed. He kept rolling over, shifting, acting like he was trying to get up. I laid him back down each time, until one swift move from him was too fast for my grip. He flipped over onto his belly, wrapped his soft little arms around my neck, and laid his head on my shoulder. Still laying on his belly in the bed, but holding on to me so sweetly, he patted my back, played with my hair, and cuddled like never before. When I finally laid him back in his bed, I lay my head next to his, and he scooted over until our foreheads kissed, and smiled drowsily at me. he reached out his hand to touch my face, moved for a kiss, and closed his eyes as he drifted easily to sleep. I milked those few moments for everything they were worth. Somehow he knew I needed a little extra love that day. Or maybe he needed some, too. Sometimes the small, almost imperceptible moments when we begin to assert our independence- in ways to grow apart from each other- it is most necessary to remind each other that we are still there. As Mother, I am the touchstone for my children. And I realize a little more every day that My role in their lives will diminish, bit by bit, until they are grown themselves, and out in the world completely without me. I hope that even then, if they sense that lack of the fourth wall holding them in, that they can always return to me to feel safe, if only for a moment, before returning to their infinite explorations of the world.

3,000 miles, 8 Family Gatherings, 2 Kids a-flying, and a Partridge in a Pear Tree

2012-01-01T21:38:00.007-06:00

The whirlwind of our holiday season is OVER. And it was one for the record books! We took the kids to New York, which meant flying- not only with 2 kids, but with all of Jackson's meds and equipment. I was nervous about airport security, about losing something, about the massive exposure, the cold, just about everything. But it was an incredible trip. We did all the touristy things we never do when traveling as a couple, and I have to say I was surprised how incredible it is to see all those things through your babies' eyes. The lights, the sounds, the shows- it's all absolute magic. We saw Mary Poppins on Broadway, The Rockettes, took them walking through SoHo, Chinatown, Times Square, and every other place we could fit in in 4 days. Em got a special carriage ride through Central Park and the richest hot chocolate you've ever seen. We decorated the Christmas tree at Grampa & Nani's, & had spiced cider & cupcakes. Mike & I went out to meet friends two separate nights. I can't even fit all of the awesome that occurred into a blog, because I know I've forgotten something.

Perhaps the most surprising part of the whole trip was the airport business. I know CFers who fly all the time with no problem, but having never toted our pharmaceutical circus to 35,000 feet, I wondered what to expect. I read up on and printed out all of the guidelines from the airline, the ADA, and the TSA. We took everything in a carry on for several reasons- cargo compartments aren't climate controlled, bags get lost, and we wanted to have on hand anything we might need in flight, including nebulizer treatments. I alerted every security official that we were traveling with medical supplies, and to my surprise, we ended up being ushered through security more easily than any other time I've flown. It was also a fabulous touch that the kids can leave their shoes on, and don't have to go through body scanners, and they didn't split us up, so we didn't have to go through them either. We ended up doing nebs both at our gate, and in the air by the time all was said and done. The people around us were fabulously compassionate when J had a tough time on our return flight and cried for a while.

And as luck would have it, I encountered one of the most profound moments in line at LaGuardia security. In my mind I call it the story of the Rabbi & the Stranger. A few places ahead of us was a Rabbi, dressed in his robes, and a few places behind us, a gregarious stranger, who was small-talking most of the people in line at some point. As their paths crossed, the stranger asked the Rabbi, "Do they give you a good enough life that you never run out of compassion?" To which the Rabbi answered with a knowing smile, "It is a good life." The stranger seemed unsatisfied with the quixotic response and asked further, "But isn't it possible, doing what you do, to give so much to others that you end up empty yourself?" The Rabbi smiled again and answered, "There is no end to the compassion, all is forgiven." The stranger countered, "To a point." The Rabbi, never letting go of his comfortable smile, says, "Never to a point. Always." And the stranger somehow seemed satisfied with the exchange. I was dumbfounded by the moment. A purely curious question, an honest exchange of views, an impossibly simple, yet inarguably genuine moment of human connection amidst the crush of holiday travelers that simply struck me. And it has stayed with me ever since. A few moments later, as the line snaked around another partition, the stranger was standing just behind us. He caught Jackson's attention and asked, "Are you our pilot? Are you going to be flying this machine today?" To which J's response was to lift his shirt up high, stick out his belly, and show the stranger his G-button. "Bah-teen!" He was proudly displaying his gear for his new friend, and I wondered for just a moment if I should explain the unusual hardware protruding from within my son. Without hesitation, the stranger said, "Oh that is so neat! Look at what you've got there!" And just like that, the moment had passed, No need to explain. The line moved on quickly and the stranger was gone. A person I will likely never see again, who in the space of ten minutes twice challenged my ideas of the fleeting nature of humans in passing.