America, Let’s Talk: Mandated Healthcare Coverage and the AHCA

House Republican have just unveiled the long-awaited “replace” part of their promise to repeal and replace the Affordable Care Act. And, huzzah! – they’ve retained some modicum of sense and decided to keep some popular and very necessary components like guaranteed coverage for people with pre-existing conditions. But there are also a lot of less favorable components to unpack and discuss, so let’s start by focusing on one basic component of the ACA that’s been a point of tension for many of those opposed to it: mandated healthcare coverage.

Nobody wants to pay a penalty for not having health insurance. I get that. It’s not exactly unprecedented – I mean, in most states, if you’re caught driving without auto insurance, you can face penalties of several hundred dollars and some jail time, and may be ineligible to make injury claims against a driver who causes a damaging accident, even if the other driver is 100% at fault (so if you’re driving uninsured, let’s hope you have health insurance!). But if you felt you could afford to pay for health insurance, you probably would; and paying a penalty for not having that insurance seems to hit you when you’re already down.

The disconnect between the motivations behind mandated coverage and the mindset that paying penalties is unfair lies in the scope: mandated coverage is intended for the good of the group, and objections to it operate at the level of the individual.  

Since I’m already diving into controversy here, we might analogize it to vaccines: some may view mandated vaccination as an infringement on individual rights, but the effectiveness of vaccines depends on herd immunity. There are any number of individual liberties that end where they begin to pose a threat to the life and liberties of others (the choice to drive while intoxicated, for example), and the choice to leave your children unvaccinated poses life-threatening danger to those too young or ill to be able to receive vaccines. If a single person chooses not to vaccinate, they have decent odds of being covered by the immunity of the herd; odds are pretty high, in fact, that that person will not get sick. That’s how newborns, people with compromised immune systems and others who are ineligible for routine vaccinations remain relatively safe from vaccine-preventable illnesses. However, if lots of people choose not to vaccinate, we begin to see the resurgence of preventable diseases that had become almost nonexistent in the United States. If lots of people choose not to vaccinate, herd immunity weakens; those who need it most are no longer safe; people die.

Similarly, functional health insurance depends on herd coverage. Many of us pay for healthcare coverage; many of us don’t use it beyond a well visit here and there, and maybe treatment for the occasional respiratory bug that won’t go away on its own. And, others of us could never pay enough in premiums to make up for the exorbitant amounts our insurance companies have paid out for our very expensive healthcare. If a single young, healthy person opts out of healthcare coverage, they have fairly decent odds of not having a medical catastrophe or suddenly developing a chronic illness, relatively low odds of either drowning in medical debt or dying from lack of treatment, and the group is not hurt much by the absence of that one member. But if more and more healthy people choose to opt out, well — you have to have a lot of healthy people paying for insurance in order for the insurer to be able to afford to pay the healthcare costs of those who actually need to use the insurance.

This is not Obamacare theory; this is not socialism; this is Insurance 101. If lots of people choose to opt out of healthcare coverage, you begin to approach a point where there’s not a big enough pool of healthy people paying for coverage to cover the expenses the insurer is paying out for those who need more extensive care. Herd coverage weakens; insurers begin to cover less, and pay less for the things they are covering; those who need it most are no longer able to access the care they need; people die.

The Republicans’ proposed plan would remove the mandate on coverage. This may seem like a good thing – freedom of choice! But their plan also:

  • Revises the financial assistance available to help pay for healthcare coverage. The proposed tax credits will be lower, in many cases, than the current subsidies made available by the ACA. Fewer people will be able to afford coverage.
  • Proposes to put caps on Medicaid expansion, to an extent that even some GOP senators are saying will be damaging to those currently covered by state Medicaid policies. Fewer people will have access to the coverage and care they need.
  • Allows insurance companies to charge people a 30% penalty upon purchasing a new plan, if they have let their insurance lapse – effectively continuing a penalty against the uninsured, but one that the uninsured can only avoid if they remain uninsured.

Early analyses have concluded that the proposed bill would lead to millions of people losing coverage. And without herd coverage, healthcare suffers, and people die.

I recognize that the importance of mandated coverage can be a hard pill to swallow if you’re scraping by financially, are already unable to afford health insurance, and now you suddenly have to pay a penalty on top of not being able to afford health insurance. I can sympathize. But the alternative could quite literally be the death of you.

You can find more information on the proposed AHCA here and here – and mandated coverage is just the tip of the iceberg, so look for more from me to come.  

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Giving Voice to the Absences

img_6268Each non-Leap Year, Rare Disease Day is observed on February 28. I say it’s observed on February 28 rather than it is on February 28, because RDD is actually February 29. Like Leap Year babies, RDD chooses February 28 as its backup day of observance in all years that cannot be evenly divided by 4 (and also in years that can be divided by both 4 and 100, but not also 400 – have you ever read the actual rules for Leap Day?!).

It’s fitting that February 29 should serve as Rare Disease Day; it is, after all, a rare day. Perhaps even more fitting is its absence, its silence, in three out of every four years. Most years, for most people, February 28 slides on into March 1 as though February 29 were never even a thing. Unless you are one of the rare people born on Leap Day (at around 4 million worldwide, they are a group only 1% the size of the rare disease population), you probably don’t give a second thought to that non-second of time at midnight in which February 29 doesn’t really exist.

Rare diseases often exist in silence, too. They live in the absences: the friend who stops coming to gatherings because the exhaustion from a late night might incapacitate her for days; the coworker who stops coming to the office because the pain is too much; the mother who doesn’t explain why her child is still in the hospital because she doesn’t know where to begin.

Unless you have been directly affected by one of them, it’s likely you’ve never heard of most or all of the nearly 7,000 rare diseases recognized by NORD. I had certainly never heard of gastroschisis or short bowel syndrome until they were quite literally thrust into my lap four years ago. But if you know even a handful of people, odds are high you know someone who has been affected by rare disease. By definition, each rare disease affects fewer than 200,000 people in the United States at any one time, but collectively there are more than 30 million people living with rare disease in the U.S. – that’s about 1 in 10 – and an estimated 350 million people worldwide.

This year’s RDD theme is research, and research is certainly a fundamental necessity for the rare disease community. Fewer than 5% of rare diseases currently have a treatment, and lack of knowledge and quality information can result in devastating delays in diagnosis. Many people remain undiagnosed, sometimes for entire lifetimes. And the need for treatments and cures is pressing; rare diseases are responsible for 35% of deaths in the first year of life, and 30% of children with rare diseases will not live to see their fifth birthday.

Last year’s theme, however, will always resonate most deeply with me: Patient Voice. On a true Leap Day in 2016, RDD made those 350 million voices heard. Research is brought about by advocacy and awareness, and advocacy and awareness begins with voices. The patient voice is the best advocate in a world where even most doctors don’t understand rare diseases, and it is the best avenue for placing faces next to scary, unpronounceable words. It’s voices that fill the absence; voices that inspire more voices; voices that make sure someday, somewhere, a mother will never feel as completely and utterly lost and alone as I felt in 2013.

To hear more voices or to learn more about rare disease, visit rarediseaseday.org or Rare Disease on The Mighty.

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Raphael the Girl Tiger: L’s Healing Helper

When we were plunged into our health journey, we had never heard of gastroschisis or short bowel syndrome or TPN or a Broviac or a Mic-Key button or any number of other things. Our world suddenly became very narrow, and very deep. Among those things we had never heard of, however, were a number of organizations and resources available to help families who find themselves in our shoes, which I’ve recently gathered on a shiny new resources page linked in the black bar at the top of each page on this site.

One of these is Avery’s Angels, a foundation dedicated to gastroschisis research, awareness and family support. One of the many amazing things they do is a “Warrior’s Christmas” program, through which they provide Healing Helpers to kids who face ongoing medical challenges due to gastroschisis. And this year, L was chosen as one of their Warriors.

Meet Raphael the Girl Tiger:

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(Cousin C, I think we may be inadvertently channeling Hank the Girl Cat.)

With all the boxes of medical supplies that show up on our doorstep (see those boxes of Pediasure stacked over there?), you’d think L’s enthusiasm for opening packages would have been tempered by this point. But he is continually elated to open each box to find out what’s inside, and this time the contents did not disappoint.

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Raphael the Girl Tiger has had intestinal surgery that left a scar just like L’s, and she also has a g-button and scars where her line and her ostomy used to be.

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Here, L is performing primary closure:

L has never been attached to any one lovey or blanket, but Raphael the Girl Tiger has quickly become a bedtime staple. And, in true short gut fashion, she’s already proven admirably resilient when it comes to being puked on (I’ll spare you the photos on that one).

L, Z and I send our love and thanks to Meghan and the entire team at Avery’s Angels for Raphael, and for the important work they do each day to help families going through medical hell or unimaginable loss.  

If you know of any organizations, blogs, or helpful tips that should be included on my resources page, please let me know!

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Tales of a Line-Free Kid: The Pinch

Being line-free has more advantages than I can quickly catalog here, but it also has one definitive drawback: needles.

Malabsorption necessitates frequent blood draws to monitor vitamin levels, hydration, liver enzymes and a plethora of other things. Depending on what else is going on with his health, L has had monthly, biweekly, weekly or occasionally even daily labs since he was born. However, with the exception of a brief stretch in the summer of 2014, L has also had a line of some sort his entire life. That means that we have had the good fortune (can we really call it that?) to have been able to draw his labs through his line, needle- and pain-free. Because we were, erm, between doctors for several of those line-free weeks in 2014, he has had a grand total of one traditional blood draw in his entire life, at around 15 months old when he was too young to remember.

Until today.

I was nervous, heading into our appointment today. I have friends with kids – small children, far too young to be so brave – who are so accustomed to needles that they chatter and giggle through labs. There are others, though, many others, who have been so traumatized by extensive poking and prodding that they require sedation for even the simplest blood draw. L does well when we explain to him well ahead of time what’s coming, and for a 3.5-year-old he is very receptive to being reasoned with, so I hoped I could employ some of the tactics we have long used to talk him through dressing changes; but, thanks to regular dressing changes, he also panics when we so much as pull tape off his skin. I felt as though an awful lot of weight was riding on how I managed this first needle.

In the empty waiting room, we made a game of squeezing together into each of the extra wide chairs. As the panicked screams of another poor little soul rose ever-louder from the back, I amplified my laughter in a futile attempt to mask what awaited him.

Finally, it was our turn. “I’m scared,” he whispered.

“I know, buddy. But remember what we talked about? I’ll be with you the whole time, and it’ll just be a little pinch and then it will be all done.”

The phlebotomist led us to the back, and L climbed up into her giant chair unprompted. He was immediately taken with the perpetual motion toys on her desk (Dory! A pterodactyl!), and perked right up when I offered the holy grail of distraction: YouTube toy review videos (curse you, Ryan’s mom, but in times like these I am grateful for every shrill unboxing. And by times like these I mean blood draws, 5 am, and when I just want to pee in peace for once, dammit).

As she pulled out the needle, I was irrationally taken aback that there was no warm up, no sleight of hand. All of a sudden, there was a big shiny needle just staring at us. “All right, here we go,” she said. “Just a little pinch.”

I braced myself to hold him down, as I’ve had to do far too many times before, but he gave only the slightest whimper when the needle went in, and another small whimper when it came out. He watched like a hawk as she wrapped his arm in coban – red, because she had heard him say red was his favorite color as we watched the blood flow into the syringe.

He turned to me, and I held my breath, waiting for his words.

“Mama.”

His little voice was very stern.

“That pinch made a HOLE.”

“Yes, buddy, it did. I suppose I should have said it would be a poke instead of a pinch. But it wasn’t as bad as you thought it would be, was it?”

“Yes, it was! It was exactly as bad as I thought it would be –”

My mind raced to come up with exactly the right words to steer him back in the right direction. But there was no need:

“Can I have more stickers?!”

America, we need to talk.

This is not a political blog. I have no intention of making this a platform for a partisan agenda. This is a place to share and reflect on our health journey, and I want it to remain a safe place for people and families who are struggling, regardless of your politics.

But there are some things we need to talk about.

There are some very, very scary things brewing in the world of healthcare legislation. And unless you are independently and exorbitantly wealthy, they will affect YOU, no matter what kind of insurance you have.

I don’t pretend to have a perfect answer, and I’m not here to argue the finer points of any politician or party’s proposed (or as-yet-still-not-proposed) plans. What I can do is talk about our experience navigating the current healthcare system, and how some of the current protections and impending changes affect and/or could potentially affect my family – real people who, if you’re reading this, you may very well actually know, and whom you might even like a little bit.

Let’s start with a couple of basics:

  • We currently have protection against lifetime limits on benefits.

In 2009, the year before the ACA banned lifetime dollar limits on healthcare coverage, around 59% of American workers had insurance plans with lifetime maximum benefits, many with limits of $2 million or less. That may sound like a lot of money, but 131 days in the NICU is really, really, insanely expensive. My son’s bills had surpassed $3 million before he ever came home from the hospital.

Since then, he’s had 8 additional surgeries, daily intravenous nutrition for most of three years, daily home nursing visits (at least as billed – but that’s a long, ranty story for another day), and so many readmissions I’ve lost count. That’s not a cliché; I’ve actually lost count. Last month we got a bill for $55K for part of his last big surgery. That one had been improperly processed as a denial and was quickly taken care of, but if our (employer-based, not ACA) insurance were allowed to deny us coverage after we hit a specified lifetime limit, we would currently be in financial ruin and unable to afford L’s care, let alone anything that might arise in the future.

  • We currently have protection against being denied coverage due to pre-existing conditions.

img_6138L is a walking pre-existing condition. His condition existed before he ever even emerged into this world. Insurance companies used to be allowed to deny people like L coverage simply because he got the shit end of the randomly-occurring congenital lottery (through no fault of mine and certainly through no fault of his own); if that were still the case, my husband would be unable to change jobs, we would be royally screwed if he got laid off or if his employer decided to change insurers, and once L is old enough to age out of our insurance coverage, he would be financially ruined before he was even given a chance to try his hand at this whole adulting thing – especially if he is no longer allowed to stay on our insurance until age 26, which is another ACA protection that’s currently in jeopardy.

  • This could happen to you.

This could very well be a letter to myself a few years ago. Before L, I had very little real understanding of what lifetime limits or denial of coverage based on pre-existing conditions could actually mean in practice. For anyone reading this who may be unfamiliar with our story, I was a healthy, active, 28-year-old expectant mother doing all the right things and experiencing a textbook pregnancy – until my son arrived very suddenly at 34 weeks with an undetected, randomly-occurring congenital defect that ultimately cost him most of his small intestine. He spent more than four months in the NICU before coming home, and while he is currently a happy, smart, well-adjusted preschooler with a bright future, he has needed significant medical and nutritional support his entire life, including a feeding tube and a central line, to ensure that future remains possible for him.

If you think you’re safe because your insurance is employer-based, pay attention to these two regulations. They offer protection against crushing blows to real people. None of the statements I’ve just made is a revelation, or at least they shouldn’t be, but it’s very possible you may not have considered the real-life consequences of these things for people you actually know. For people you love. For you.

Monday Moments

In theory this is the first in a series of posts about meaningful moments that I would like to think would happen weekly, but that in reality will probably show up on scattered days here and there, because, you know, life and stuff.

Since things were getting pretty touchy-feely around here as 2016 drew to a close, I’ll kick things off with a story about a time when I was kind of a jerk.

A few days after L’s big surgery in October, L woke up with significant pain. He had lost his epidural the night before and very clearly needed some extra pain management, and I was in mama bear mode while trying to calm him since thrashing doesn’t feel particularly good on a fresh abdominal incision.

Right about that time our nurse for the day walked in to introduce herself. She was most likely assessing the situation and getting a quick update from Z, but in the heat of my mama-bear moment it felt like they were both standing there for ages and ages watching my child in pain without doing anything at all to help.

“Can you get him some morphine instead of just standing there?!”

Sometimes I’m an asshole.

Now, it would have been a normal human response for her to get defensive or chalk me up as a pain in the butt. I wouldn’t have blamed her if she’d done so – simply checking off her required duties and stopping there, or avoiding engaging with me since I was not her patient and I was clearly kind of difficult.

Instead, she recognized that my sharp words were not directed at her, but instead stemmed from the stress of the situation. In spite of me having introduced myself as kind of a jerk in that moment, she gave me the benefit of the doubt and went out of her way to provide fantastic care for our whole family, not just L. When we were stuck waiting in radiology between rounds of imaging, she came down to us with a dose of antibiotics and stayed for the 15 minutes it took to run through his line, talking to us about our journey with L’s health and our experiences with different providers. She took that time to get to know us and what we needed from our caregivers, and she really listened and responded to our needs. She respected us as experienced members of L’s care team and made sure we were included in decision-making when it came time to determine whether or not L should remain NPO (nothing to eat or drink) another day. And when it came time to change the dressing on his central line, which we do at home once a week, she let me do it myself according to the procedures we use at home, which are sterile but more child-friendly and familiar than some of the standard hospital protocols, and so ultimately safer and more comfortable for L – and was a better support for me through that still-stressful process than any other nurse who has ever assisted me with a dressing change (I’m looking at you, nurse who criticized or questioned every move I made even though you hadn’t done a dressing change yourself in months).

On the day we were discharged, she was serving as charge nurse. She helped move things along to make sure we were discharged on schedule, and we arrived at home mid-afternoon with plenty of time to get settled back in and set up the evening’s TPN. Only, the TPN hadn’t been delivered to our house, and when we called to check on it our home pharmacy said they had not received the orders. After several phone calls with GI and the pharmacist, I called back up to the surgery floor we had just been discharged from – and she answered. It was right at shift change and I caught her just as she was about to walk out the door, but even though it was not her error (it turned out to be an error on the side of the home pharmacy), instead of passing us off to someone else she took charge of the situation, stayed late to make sure new orders were sent, called the pharmacist herself to make sure she had received the new orders and called us back to make sure our delivery was on its way, because she wanted to make sure L had what he needed to continue his recovery.

This is not a story about listening or staying late. What impresses upon me the most is that she did all this after I snapped at her, without missing a beat. This is really a story of selflessness; of being able to recognize when others are in pain and to swallow your pride and put them first. It’s what we would hope of any caregiver, but in practice, as humans, I think it’s much harder to live out. And it seems to me that the ability to truly put the patient (and even his asshole family members) first is what caregiving is really all about.

Line free is the way to be….I think….probably….Yes, okay, we’re definitely maybe ready for this. I think.

This morning we got a belated Christmas gift:

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I hadn’t wanted to say too much until it was actually done, because we have already delayed the line removal procedure once due to a cold – and we have been close enough to this enough times to know that even when things seem to be going stupendously, that can disappear in the blink of an eye (remember what happens when we get cocky enough to look progress directly in the face? Poof! Liquid shit.)

It’s funny, thinking back over my evolution as a short gut parent. This is the fourth time we have stopped TPN, and the second time we have pronounced ourselves line-free. The first time, a lifetime ago, when we were still with our old GI and before I had begun to make peace with the NOT KNOWING, we only stopped TPN because I pushed for it – and oh how I chafed when we were required to keep his line for a whole month before pulling it, just to be sure he could gain weight without it! And when we finally did achieve that golden pinnacle of line-free-ness, I threw a party, and I fought like hell when we began to move toward replacing a line and going back on TPN.

The second time we stopped TPN, I felt seasoned. I accepted the waiting period, or so I thought, because I knew exactly what kind of hell it had been the previous summer when L’s nutrition slowly failed. But I still went to every appointment with eager anticipation that this time would be the day GI would give the approval to pull the line, or maybe this time, or surely now this one – and I made myself crazy, as seven months slipped by, with me always thinking this week would be the week, until a series of mild illnesses proved that L was not ready to be off of TPN after all.

The third time we stopped TPN, just about nine months ago, I was resigned to the process. I fully expected months on end of weight checks and labs and waiting just a little longer, and then a little longer still. I didn’t ask when we could pull his line (or at the very least, I didn’t ask relentlessly at every opportunity). And four months later, when TPN returned and we began discussing surgery options, I was not surprised. I didn’t fight. I knew he needed it.

And now, having just stopped TPN for the fourth time, I have completed my 180 degree swing. Last month, just two weeks after our last night of TPN, GI began talking about pulling his line by Christmas.

Are you sure? Shouldn’t we wait just a bit longer?!

He can do it, she said. He’s ready.

And so, just in time for the new year, we head into what I supposed you could call Phase 2 – although this is really more like Phase 2 version 4.0, and in reality, like always, we will just keep chugging along and hoping this doesn’t turn out to be Phase 2 version Samsung Note 7.

Although, you know, now that Ivy is gone, if Phase 2 begins to catch fire we can just toss L in a pool. He’s been asking to go swimming….

Look out, 2017. Next year is the first year of the rest of L’s life.

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Oh Christmas Tree, Oh Christmas Tree, How Scraggly Are Your Branches

How Home Depot Saved Christmas

On this day last year, we were at the hospital.

(Are you starting to see a theme here?)

One year ago today we had to have L’s line replaced. It was a Wednesday, and we had spent all day that Monday in the ER trying to clear a clotted line to no avail. Since that Tuesday was the day Santa came to L’s school, and also the day we were having out-of-town friends over for dinner, and also the day I had a big job interview, they agreed to let us wait until Wednesday for line replacement surgery.

All of this coalesced at exactly the wrong time, and so it was we found ourselves in search of a Christmas tree on the afternoon of Christmas Eve.

We had meant to go get our tree a number of times in the weeks leading up to Christmas, but between weekends of travel to early holiday celebrations and multiple hospital admissions for fevers and a jaunt to same-day surgery for ear tubes, we kept putting it off. The delay wasn’t a big problem for our holiday preparations because we don’t decorate the tree until Christmas Eve, anyway, because we’re weird like that. We had planned to finally for-real-this-time go on the Monday before Christmas, but that turned into the aforementioned trip to the ER instead. And because I was paid hourly at the time, and had already missed a number of hours of work for ER + job interview + line replacement surgery on the most expensive week of the year (thanks a lot, Coca Cola Santa Claus), I went in to my office on Thursday – Christmas Eve – until it closed in mid-afternoon.

And so, around 4 pm on Christmas Eve, we set out in search of a tree.

It had become a family tradition to get our tree at the Ted Drewes lot, because who doesn’t think it’s a great idea to eat frozen custard while freezing your tuchus off outdoors in December? Plus, they put a whole slice of pie in their pumpkin pie concretes. A WHOLE SLICE*.

*This post is not sponsored and all opinions are my own. But if Ted Drewes wanted to sponsor this post (hint, hint), I would eat the shit out of some free pumpkin pie concretes.

But when we pulled in to the Ted Drewes lot, it was bare.

Only mildly daunted, we climbed back in the car with a sprig of mistletoe and a pumpkin pie concrete (it’s tradition, after all) and headed up the road to a little local garden shop we knew had trees on their lot. But as we pulled up, we saw a truck loaded up with the last of their Christmas trees pulling out of the parking lot.  

Seeing as how it was approaching evening on December 24, we realized that this might be our last chance at having a Christmas tree that year and did the only logical thing we could think to do at that moment – we followed the truck. We tried pulling up next to it and waving our arms like maniacs; they didn’t notice. We tried to wait it out to see if they would pull into a gas station; they didn’t. We followed them all the way out of the city in hopes that we could not-at-all-creepily ambush them at their destination and talk them into selling us one of their remnants, but they just kept driving. Finally, we lost them at a poorly timed traffic light and realized we needed to move on to plan C.

We headed to the closest Lowe’s and inquired about their remaining fresh Christmas decor – Nada. Zilch. Zero.

At this point I was starting to fear that our procrastination and bad medical luck had ruined Christmas on the first year L was old enough to actually know what was going on, but Z kept a cool head and began making calls, and at last managed to find a Home Depot several miles away that was still open and had not yet gotten rid of the remnants of their holiday cheer.

I don’t know if you’ll want any of what we’ve got left, they said. But if you come right now, we won’t load it up until you get here.

Away to Home Depot we flew like a flash, rushed to the garden department and checked out their stash. And what to our wondering eyes did appear, but … the sorriest collection of scraggly, squatty, half-dead trees that ever has existed ever.

Per tradition, we inspected our options and carefully select the biggest, most magnificent tree of the lot. It was barely as tall as I am (which is not saying much), and was half bare and shedding needles by the minute had so much fantastic space for ornaments! The kind souls at Home Depot sent us on our way free of charge, and in the spirit of the season gifted us a free (only slightly smushed and browning) wreath to boot. And as we carried our Charlie-Browniest of Charlie Brown trees out to the car, I imagine the other shoppers must have thought I was lamenting the pitiful merchandise we were walking out with — when in reality, I had tears streaming down my face because, after the madness of that week, I was so gosh darn happy we had a tree at all.

decoratingWe took it home, and we decorated the crap out of it. One of us (not naming any names here) took special care to especially decorate the crap out of this particular spot right here which just happened to be about 2 feet off the ground.

And you know what? It was beautiful.

Whatever you are searching for this season, may peace and kindness find you and keep you warm. Happy holidays, from our Gutsy family to yours.

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Gutsy Surgery: A Joy Project

I recently discovered a photo series, created by the mother of another little short gut warrior, that depicts the stark contrast between how we view our experience as parents and how our children view the same things. I love the images and the sentiment, but, being a nasty cynic committed to raw honesty, I couldn’t help but think how little time our children have to enjoy the pure innocence and joy she attributes to the perspective of her son before real awareness begins to set in. The past few weeks have proven to me more than ever that even at three, even though he seems to be infinitely resilient, L understands that something is happening to him that maybe shouldn’t be; that pain is not normal and not okay. He knows his friends don’t have lines and tubes. He knows his friends can have cookies and he can’t. And last week when we were admitted for 48 hours for a fever (standard procedure with a central line while they rule out line infection), we also got to take a trip to ER radiology because he told the ER doctors his belly hurt – because last time he was in the hospital, they made his belly really hurt, and he was afraid they would do it again.

And yet – in spite of all that, his pain does live alongside a deep and abiding joy, sometimes within seconds of each other. When I picked him up from school and told him we were heading to the hospital last Monday, he shrieked and jumped up and down with excitement.

It impresses upon me more than ever that I must teach him that it is okay to be angry and sad sometimes about the difficult things life has handed him, and also that that anger and sadness don’t have to replace joy, but instead can live alongside it. I don’t quite know how to teach him that; but I think it may be my most important job as his mother.

And so, inspired by Emerson, and by Emerson’s mama, let’s talk about all the many happinesses we have found during our gutsy surgery journey: the train table in the playroom, the clown doctors and the dog therapists, and the importance of a hospital that understands the profound healing that is brought about by happiness. Here is a look at joy.

There’s this view of the sunrise:

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There are wagon rides:

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There’s plenty of doctoring to be done, and an endless supply of bandaids:

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You get to wear your jammies all day, and you get extra snuggles.

There are Darth Vader toes:

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There are furry visitors:

And funny visitors:

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And visitors who are so exciting he can’t bear to look away:

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And there are visitors who are absolutely terrifying, but still somehow know that Thomas minis are his very most favorite of all:

There’s a train table that provides endless hours of fun, and also the motivation to take not just one first step after surgery, but to turn that first post-op step into a dozen steps because Thomas really needs to drive to the other side of Sodor. 

There are superheroes:

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And there are real-life heroes:

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There are poops to celebrate, and a whole floor full of people who understand just how much celebration those poops deserve (don’t worry, I’ll spare you the photo here – although I have quite the collection!)

There is midnight construction thanks to staff who know exactly where to find “ya bulldozer and ya frontwoader yat were so fun in ya pwayroom a couple a weeks ago”:

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There’s the pride of completing his very first 24-piece puzzle all by himself:

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There’s a neat phone you can pick up that makes pizza and grilled cheese (and occasionally a few vegetables) show up right at your door:

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There’s a garden to explore that contains the whole world:

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And there’s the day the garden transforms into a winter wonderland:

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Most of all, there are friends. I can’t post pictures of most of our friends (thanks a lot, HIPAA) but there are so many, many moments of connection, big and small – with other children and with their parents, who are probably the only people in the world who truly understand; with friends and family who are pulling for us from all over the world; in visits from new friends we never would have met if we hadn’t been thrown onto this path; with nurses we’re meeting for the first time but who treat us like family, and with nurses who have come into our lives and have come to feel like part of our family. At the beginning of our journey I felt so incredibly alone, and I have gradually, and painfully at times, come to feel like part of an incredible community.

In my last post I insisted that happiness and the ability to thrive is not incompatible with continued struggles. But even now, when things are going well for L (and they are indeed going well, more to come on that soon!), I occasionally need to remind myself that continued struggles are not incompatible with happiness. Yes, there is pain. There will always be pain in the world, in all kinds of forms. But alongside that pain, and in spite of it, lives joy.

On World Prematurity Day, here’s what “thriving” really means

Today is World Prematurity Day. Each year on Nov. 17, I see lots of stories about former preemies who are now thriving – and very little mention of former preemies who are still facing challenges. Don’t get me wrong; I’m thrilled to see the amazing things these kids go on to do. It’s given me hope in some of my darkest hours. But something is missing from the public face of that conversation, because for some of these kids “thriving” looks different from what most people might imagine. Many face a long hard road to get to “thriving” that actually intensifies once they leave the hospital. Sometimes there are long, long stretches of “thriving” that are actually more like barely treading water. Not every story ends with a tidy “happily ever after.”

I actually wrote much of the content of this post last year, before I was even blogging, but didn’t end up doing anything with it on World Prematurity Day because – guess what – we were back in the hospital. Thriving, but only just barely, and with significant medical intervention.

At some point in L’s first months, when he was still in the NICU and we were still wrapped up in coming to terms with the way our world had been suddenly turned upside down, I went to the grocery store and forgot to take off the “Mom” visitor sticker that was a staple of my wardrobe that summer.

The woman at the register saw it and smiled. She asked if it was from a visit to school. “No,” I said, regretting having left it on and hoping she would leave it at that. But she pressed on. When I told her it was from the NICU, her expression changed to one of pity. “Will he be going home soon?” she asked. No, I told her, we had another surgery scheduled. She grew visibly uncomfortable. “But then after that? He’ll be fine after that?”I couldn’t bring myself to voice the fact that I wasn’t even certain my son would survive his next surgery, let alone tell her when he might go home. So, in the darkest stretch of my life, I put on a mask and returned her smile and nodded, protecting a stranger from the world that had become my reality.

It’s a world no one wants to face — a world in which babies sometimes die and not everything can be fixed. And almost without fail, when people bump up against that world for the first time, they want to know when the happy ending will arrive, because they can’t quite bring themselves to look directly at the possibility that there won’t be one.

I can’t really blame people for trying desperately to find the finish line. NOT KNOWING is a terrifying, soul-sucking place to dwell. It took me a long time to realize that a finish line wasn’t what we were seeking. As surgery turned into surgeries and the weeks turned into months, I kept waiting for that shiny ribbon to come into sight so we could dance through it on our way out the hospital doors.

But when we were finally discharged and my son was home, we found that in many ways things got harder. And so my focus shifted to the day we could finally be rid of his central line. Surely then we would celebrate on the other side of the finish line. But that day came and went (I threw a party! complete with a kiddie pool and a sprinkler that L wouldn’t touch), and soon things started to get really difficult again, and the line and the TPN we had worked so hard to wean him from came back.

Only then, 16 months into our journey, did I realize that there was no finish line, because we had never been in a race. The route we’d suddenly been diverted to was just a path.

As a society, we fixate so much on the ability to triumph over hardship that we inadvertently silence anything that doesn’t fit that narrative. Even now when I tell someone about my son for the first time, they often gravitate toward the same kind of questions — questions designed to propel our story toward that glorious finish. “But he’s okay now?” “Will he outgrow it?” “Will this surgery fix it?” And every year on Nov. 17, I see other parents of preemies and medically complex children offering the same kinds of public reassurance I gave that grocery store clerk.

It’s scary to face the thought that not everything is fixable, but it’s unfair to these children and to their families to gloss over the incredible battles they fight — battles they may continue to fight for the rest of their lives, battles they may never win — just so we can take false comfort in the thought of a storybook ending.

amy-thompson-3-001L is an amazing kid. I believe he has a bright future ahead of him. And he will probably never be well, at least not in the traditional sense of the word. Losing most of your guts isn’t exactly something you grow out of. But talking about his health doesn’t require the hushed tones usually reserved for illness and tragedy. Happiness, success, the ability to thrive — these things are not incompatible with continued struggles, and I wish there were more room in our conversations for journeys that don’t end with an unqualified victory. Because sometimes the path is the victory.

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A version of this post originally appeared on The Mighty