Happy Birthday, L

I’ve said before that while many parents think the early years fly by, for us it tends to feel like each year has lasted decades.

In those first hours and days and weeks we didn’t know what L’s future would look like or if he would have one at all, IMG_6713and yet now here he is today “my precious”ing his very own piece of cake (I guess when you’re allowed to have sugar for the first time after four years without any you kind of go Gollum) and laughing raucously as he makes his new Thomas Trackmaster Sky-High Bridge Jump hit him in the junk repeatedly. #miracles

It’s only been four years, but it takes an awfully long time to come as far as he has. His first birthday was really difficult for me, but I’ve come a long way since then too, and each year that difficulty fades a little more.

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Number Two

I’ve heard a lot of special needs parents say, “I’d do it all again.”

I had a hard time believing them in some of our early months. I knew with every fiber of my being that I would go to the ends of the earth for my son, and I have never once questioned whether L is worth everything we’ve gone through for him, but if I had a choice — would I choose to do it again?

That question certainly complicates the fact that I’ve never imagined myself as the mother of an only child. For the longest time, we had our hands so full keeping our first child alive that we couldn’t even contemplate the added responsibility of a second child. As things gradually grew easier, as we learned to better navigate this medical life, a brother or sister for L began to seem more attainable – but that choice was clouded with what-ifs. In theory, we have no increased risk with a second pregnancy because gastroschisis is spontaneous and randomly occurring; but our eyes have been opened to medical realities we had never imagined before L was born, both our own and those of others, and some far more intense and all-consuming than what our family has experienced. And we know better than to expect we will never have any more bumps in the road with L.

And so, contemplating number two, we found ourselves faced with the real-life version of what has been only a hypothetical before. We knew exactly how difficult it could be if an unexpected complication arose, and we perfectly understood the potential threat to the current balance in our lives — and this time we weighed all those overwhelming negatives with the very real possibility of opting out before we ever got started.

It was never a matter of whether or not we could handle it; we have learned all too sharply over the years that you handle what you are given, because what other choice do you have? No, the real question was: Did we want to?

After much soul-searching, lengthy debate, and repeated decisions to delay just a little longer, and a little longer, and a little longer still, we ultimately decided that we did not want to let our decisions be guided by fear.

Number Two is due Nov. 3.

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Gutsy Surgery: Six Months Later

I think medical time moves differently than regular time. It has split personalities, perhaps. When you have young children, the weeks and months seem to fly by somehow (“Can you believe he’s going to be FOUR?! How is he almost four years old?!!!”) but in many ways, even this last big surgery already seems like a lifetime ago.

A friend asked me recently, “So, was the surgery a success?” She’d asked me something similar before surgery – how will you know if it works? – and I had fumbled through an explanation about how there may never be a clear answer to that question, in much the same way that there’s never really a finish line for us; there’s no real “cure” with L, it’s always an ongoing process of management, and varying degrees of better and worse.

Today though, just six months out, I can say without hesitation that our October surgery was a resounding success. Even to write that makes my breath catch just a little – how gutsy of me, to make such a bold proclamation, and surely perhaps a little naive? In our house, we don’t even say “at least bedtime should be easy tonight” because that’s the surest way to guarantee it will take hours; we’ve spent so much time refusing to look directly at progress for fear it will slip away that to voice the words “resounding success” feels downright dangerous. As certain as I am that this surgery was a success, I am equally certain I will live the rest of my life waiting for the other shoe to drop.

And yet – his appetite came in with a roar less than two weeks post-op, and there’s been a hungry lion living inside him ever since. He eats seven or eight times a day, and not just grazing; he’s eating full meals, and my picky eater’s short list of “L-approved” foods has expanded from roughly a dozen fruits, carbs and cheeses (but only in very particular shapes and forms) to an entire world of food groups and variety. Meats! Fish! Nuts! GREEN VEGETABLES!

He’s eating, and tolerating nearly unrestricted liquid intake, and his gut is working so incredibly much better than we ever dared to hope before. He’s having beautiful poops (Look, mama! Let’s take a picture!), and only 2-3 times each day as opposed to the so many we were seeing before. His belly is smaller – it would get horribly swollen before surgery, due to the dilated sections and bacterial overgrowth – and he very clearly just feels better all around. The cause and effect of all these things seems a bit chicken-or-egg, but they all play off each other to keep the rest moving in the right direction.

He was able to come off of TPN (IV nutrition) about six weeks after surgery, at which point we switched to overnight g-tube feeds (that means we’re running a medical version of Pediasure through the feeding tube in his belly, which goes directly into his stomach as if he were drinking it, only in a slow, steady drip that’s more easily absorbed). Over the last three months, we’ve cut the volume of that overnight Pediasure in half, and he’s been able to maintain weight, stay hydrated and stay on his growth curve; we’re hoping to keep forging ahead and sooner or later ditch the overnight feeding pumps altogether.

The biggest remaining hurdle is vitamin deficiencies, which aren’t going away anytime soon and can cause some serious health problems over time if left untreated. But even there, it’s an ongoing process of management, not a discouraging setback – and we have some exciting prospects on the horizon in the form of patches and pills.  

We’ll never be completely free and clear. L’s gut could re-dilate. He could develop a new stricture or obstruction or perforation – I still suppress a dull panic every time he complains of a stomachache. He could experience an illness that unexpectedly throws us into a long downward spiral. And as he grows, he may go through stretches where his body can’t keep up with his nutritional needs, and we may need to supplement in one form or another.

But for now, he is thriving. He is healthy. He is line-free. And we are making up for lost bathtime.

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It’s an April miracle.

Let it be known that on this day in history, L swallowed a pill.

My not-quite-4-year-old SWALLOWED a motherflipping PILL.

This is huge – not least because about a year and a half ago, he was seeing a speech therapist for feeding issues and receiving occupational therapy for suspected sensory processing disorder. (Admittedly, the driving force behind swallowing the pill was that he loathes me poking the pill and squeezing its innards into his mouth, which doesn’t exactly rule out sensory issues here. Just let me have this for now.)

The potentially bigger reason this is huge, though, is that the particular pill he swallowed is a massive dose of Vitamin D (befitting of the superhero phase we’re currently in, we call it “Super D”). One of his biggest hurdles right now is vitamin absorption; certain parts of the gut absorb certain vitamins, and it’s likely he just doesn’t have the parts of his gut that are responsible for most of his vitamin D absorption. Twice each day, he takes a double dose of a liquid multivitamin designed for kids with malabsorptive disorders, as well as a separate vitamin E, vitamin D and liquid iron supplements.

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And these doses are large. To put it in perspective: a typical dose of adult vitamin D drops (and remember we’re talking about a 36lb child here) is 4,000 units. His regimen included those 4,000 unit drops twice each day, plus a 50,000 unit “Super D” once a week – and he was still deficient. We bumped up to 50,000 unit Super D twice per week — still deficient. We did recently add in these neat patch vitamins that claim to absorb directly into the bloodstream through the skin, which we’re hopeful might be a turning point for us, and our initial trial in the week before his last round of labs did show his Vitamin D levels moving upward – but by a whopping one point, while still taking his biweekly Super D, so the jury’s still out on whether or not we can switch to more regular-sized doses of patch vitamins (full review to follow after May labs!)

Currently, we put all these vitamins through his g-tube. After his last big surgery, we were able to drop the twice-daily 90 ml of green bean puree that had been part of his vitamin regimen for years (green beans are great for thickening up short gut poop!), and we had started squeezing the Super D into his mouth, which he hated, but it would be a miserable, hopeless battle right now to try to get him to take all the rest of these supplements orally, twice each day. (Have you ever tasted liquid iron?!)

Swallowing a pill, though — that’s new territory. He’ll still need alarmingly large doses of anything that goes through his gut, but we’re slowly weaning off of his overnight tube feeds; vitamins are the last big hurdle. And swallowing pills could open up new doors. Tube-free doors.

To be continued….

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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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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

Red, Red Wine: the story of a boy and his Neil

Last year for Halloween L dressed up as Neil Diamond. neil-1

This is the story of why, in the year 2015, in a classic-rock-and-Black-Crowes-loving household with a fire truck-obsessed child, there was absolutely, without question, no better costume for my two-and-a-half-year-old son.

Once upon a time when L was about nine months old, I bravely took it upon myself to drive the four hours to my hometown with L, alone. “Everything’s gonna be fine!” I thought to myself. “I’ll leave at bedtime and he’ll sleep the whole way there.” And that is indeed what happened – at first.

Two hours into our journey, just as I was congratulating myself on my prowess as a capable, independent mama and thanking the Lord for the night time – L woke up. With a fury.

I tried to soothe him. I offered a bottle. I offered a pouch. I pulled over at a rest stop and bounced around a few empty parking spots with L and his TPN backpack. He. did. not. care. This was not his crib and he did not want to be strapped back into the car and he was ANGRY AND EVERYONE MUST KNOW IT. I finally gave up, bundled us back into the car, gritted my teeth, and turned up the music, resigned to another two hours of car seat rage. He screamed through Robert Plant. He screamed through John Lennon. He screamed through Aretha. He screamed through Chris Robinson and Pete Yorn and Eddie Vedder and Dave Grohl. And then – NEIL came on.

In the still of the night, as the first bars of Neil Diamond’s “Red, Red Wine” filled the car, a miracle occurred. L grew quiet.

The glorious calm lasted only until the song ended. Skeptical but hopeful, I hit the back button. “Red, red wine….Go to my head….

Silence. Two minutes and 42 seconds of delicious silence.

When he began to scream again, I put the song on repeat and held my breath – and lo and behold, he immediately quieted. Amazed and confused, I listened to that beautiful noise for the remaining 45 minutes of our drive.

Two days later, it was time to embark on the long way home. I was certain the wondrous musical salvation I had experienced on the drive there had been a fluke and was preparing for a long, rage-filled ride. Again we left at bedtime; again L made it only about halfway home before waking up; and again – FURY.

I did not hold out much hope, but I resolutely turned up the volume and searched for Neil. “Red, red wine….Go to my head….Make me forget that I….Still need her so….

SILENCE.

From that point on, I was a believer. Going for a long drive? Neil Diamond’s “Red, Red Wine.” L won’t calm down at bedtime? Neil Diamond’s “Red, Red Wine.” Holiday travel? We listened to Neil Diamond’s “Red, Red Wine” on repeat for more than 20 hours in one three-week stretch of December 2014.

Red, red wine
Go to my head
Make me forget that I
Hate my car seat

Red, red wine
It’s up to you
All mom can do, she’s done
But yelling won’t go
No, yelling won’t go.

I’d have sworn that with time
You’d get used to your car seat
I was wrong, and I find
Just one thing makes you not scream

Red, red wine….

It was consistent and effective. If L was upset, Neil Diamond’s “Red, Red Wine” quieted him almost immediately. Other Neil songs would not do. Other versions of “Red, Red Wine” would not do. L knew what he liked, and what he liked was Neil Diamond’s “Red, Red Wine.”

From January 2015 through the summer, we didn’t drive much. After a while, our Neil addiction dwindled. Then, at a little over two years old, L started going to school and we started spending more time in the car. Z and I thought our commute offered a great opportunity to provide a little musical education for L. And one September morn, I wondered….we hadn’t played this song in months. At nearly 2.5 years old – would he remember?

I put it on. He grew still, listening. “….It’s tearing apart….My blue, blue heart.” /closing bars.

“MOAR!”

Hello again, “Red, Red Wine.”

Every day on the way to school: Neil Diamond’s “Red, Red Wine.” It came on the radio once in his classroom and when it was over and they couldn’t play it again, he sobbed. When I picked him up from school, I was the one getting side-eyes from the other parents for carrying the toddler who was yelling, “Mama! Car! Red wine! RED WINE CAR!” all the way down the hall and out into the parking lot.

imageWhen he entered school in August our feeding therapist was pushing for a speech evaluation because he didn’t have a big enough vocabulary. By the end of the winter, he could sing every word. And we let the little boy sing.

Forget lovies and soothies and mama snuggles – all he really needs is you, Neil Diamond.

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