Dear Jason Chaffetz: My iPhone isn’t going anywhere.

Dear Mr. Chaffetz,

Yesterday, while the nation was talking about the proposed replacement for the ACA and I was busy writing about the importance of “herd coverage” in health insurance, you thought it timely to tell low-income Americans that they’d be able to afford healthcare if they would only give up their beloved iPhones.

Now, the complete tone-deafness of that remark was quickly and thoroughly denounced by the DNC Chairman and the interwebs alike, Forbes has outlined exactly how many iPhones it would take to cover the cost of healthcare, and you’ve already eaten your words. So it seems less than necessary for me to point out that my family’s health insurance premiums cost 3.5 times the cost of our phone bill each month, or that we pay approximately another ten brand new iPhone 7s toward our maximum out-of-pocket costs every single year; that my son cost nearly 5,000 brand new iPhones before he ever came home from the hospital; or that I actually received my iPhone more or less for free when we enrolled in our service plan, which also happened to come with a couple hundred dollars in Costco gift cards that we used to buy grocery staples, since we were stretched kind of thin by our medical bills at the time.

No, I think it’s more useful to consider exactly why my iPhone actually is a necessity. Here are some of the many ways it’s essential to the health and well being of my family:

  • It’s my primary, and in some cases sole, means of communication with a small army of healthcare professionals.

In the year after my son came home from the hospital, we did not have a coordinated care team; I was responsible for communicating with a pediatrician, a medical specialist, a surgeon, a dietician, a physical therapist, a drugstore pharmacy, a home infusion pharmacy, medical supply delivery drivers, home health nurses, endless insurance reps, medical billing services and a NICU follow-up team, none of whom communicated with each other. I spent a lot of time on my phone that year.

Now that we’ve switched to a more integrated team, I still depend on my phone for regular check-ins to manage my son’s care, to make and manage an endless string of appointments, to receive results from frequent bloodwork, to access help negotiating difficulties or unusual symptoms, to dispute improperly-processed claims, to pay bills, and to notify his team if it turns out we’re heading to the ER yet again. In fact, I don’t even have to identify myself when I call his specialist’s office, because I speak so frequently with the administrator who answers their phones that she recognizes my voice.

  • It’s an immediate and ever-present font of information.

When we brought my son to the ER presenting with alarming neurological symptoms that are apparently common among kids with his rare disease, none of the staff in the entire emergency department were familiar with what was happening to him. You know who was? The parents in my diagnosis-specific Facebook group, and Dr. Google.

  • Some of my best friends live in my phone.

When my son was in the NICU, I essentially lived at the hospital for 4.5 months; my phone became my lifeline to the outside world, and my primary means of keeping friends and family updated.

During that time, I also solidified enduring online friendships with some amazing women who became an around-the-clock refuge during some of the lowest points in my life; when I was struggling mentally and emotionally, when I felt like I was drowning, when even a trip to a therapist had failed miserably – the friends in my phone kept me sane and gave me the strength to persevere.

  • It’s the best way to keep a squirmy toddler still during uncomfortable procedures.

Side-eye all you want — if you had to try performing a sterile dressing change in your living room on a small child who hates medical tape and doesn’t like to be held down, you’d be rushing off to download the YouTube Kids app too. Ryan’s Toy Review has saved us from contamination on more than one occasion (and how many iPhones do you think it costs to treat sepsis?).

All things considered, I’d say the $57.49 per month I pay for my phone service seems like a pretty damn good investment. Tell me, Mr. Chaffetz, when will you be making the choice between your taxpayer subsidized healthcare coverage and your taxpayer-funded iPhone?

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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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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.

Going Viral: a response to the overly dramatic media

Don’t tell GI we’ve gone viral – we’ll be admitted for observation!

If my math is correct, in the last five days traffic to my little blog has grown by 100,000%.

Let me take a minute to let that number sink into my skull, because I still can’t quite wrap my head around it.

I thought my last post would be well-received, and I knew it had a broader appeal because it’s a lot less narrowly-focused than many of my posts. And I made it public and tagged the Cardinals on purpose, after all, hoping they would see it and recognize the usher who helped us. But I am humbled and amazed by the response I have seen to this simple story of kindness.

I want to take a moment, though, to talk about the many outlets who have incorporated varying degrees of overdramatization into my little story. I was not “frantic” or “desperate”; my son was not in grave danger, and he’s not currently critically ill. It doesn’t offend me to hear those things – I just think framing it that way is missing the point.

To me, this story isn’t about helping a sick child at all. Almost anyone would do everything in their power to help a child in dire need, but my son wasn’t facing an urgent situation. We were living a more or less normal day for us, which in our lives just happens to be a little harder than it is for your typical family. The real beauty of this story, to me, is that my son appears to be healthy, and the usher was committed to helping us simply because he could, without any underlying sense of urgency to help a “frantic” mother or a “very ill” child. I think that’s what resonates with people; that we all have an endless number of opportunities to be kind, and we never know how big an impact may be made by a small act of kindness.

My family faces a series of ongoing battles that are so pervasive and so integrated into the fabric of our lives at this point that I think we’re not always even aware that we’re constantly prepared for battle – until we are shown so poignantly that we don’t always have to be. This was made clear to me at the ballgame that day, and recently stood out in stark relief again when I spoke to L’s daycare director about his upcoming surgery for the first time. We love his school and I expected nothing less than empathy and understanding, but it wasn’t until she immediately and without question offered to be more accommodating than we’d even hoped that I realized I had subconsciously come prepared to fight for what we needed – because that is so often required of us.

You could fill an entire, ragey blog with the mess of insurance denials and claims that are repeatedly processed improperly (by complete and total accident, they swear, and they have their best people looking into it….), but beyond all that, every tiny interaction with my son is a negotiation with his health. For the most part these negotiations are not frantic or desperate situations; they are everyday things. He needs to eat far better, and far more, than most kids his age, and we also have to keep a careful balance of liquid and solid intake, so I am constantly focused on what’s going in; but he’s also three years old, and picky and spirited and stubborn, so I have to micromanage his intake without pushing hard enough for him to notice. He has a sterile dressing to maintain, but is also increasingly distressed by anyone touching his dressing, so every time we patch it or change it involves a series of careful negotiations in which we gently walk him through the process, maintaining a precarious balance between being firm enough to keep his dressing site sterile and safe, and being gentle enough to keep his stress level at a point that will make the next dressing change manageable. We frequently make small decisions that boil down to the lesser of two evils; and we need to minimize variables if we are to have any chance at deciphering cause and effect and treatment of everyday symptoms, but it’s incredibly hard to do that without limiting our lives.

And when I start to get cocky because my constant and extensive efforts are seeming to pay off at last, life often takes the opportunity to deflate my balloon juuuuuust enough to remind me who’s boss. For example, a couple days ago at lunchtime I successfully averted an overtired meltdown and put the kibosh on overdoing it on his beloved Drip Drop at the same time, and then, with much calculated negotiating and covert encouragement, managed to get my very picky three year old with mild sensory issues to eat multiple food groups! And not just yogurt and his two toddler-approved fruits, but also bites of bread and turkey! And not just bread and turkey, but bread that looked different and turkey in the SAME BITE like a REAL SANDWICH!!!!

And then while we were at the pantry getting the banana I’d promised him as a reward for this Very Major Accomplishment, and talking about taking even more bites, the dog snuck in and ate the rest of the motherflipping sandwich.

These kinds of things don’t leave me frantic, or even generally grumpy (at least most of the time). They are everyday occurrences that leave me resigned to things never coming easily no matter how much we direct every ounce of our energy at working to make things go smoothly. I wasn’t approaching the usher terribly worried about my son or despairing about how horrible this situation was; anywhere we go, we’re prepared to leave early for a number of reasons (only a few of which involve our underpreparedness!). I thought I’d see if I could find some milk, and if I didn’t we’d probably leave a lot earlier than we’d hoped, and that would be that. Not that we would welcome that, but it’s representative of that enduring, exhausting resignedness. The gift the usher gave us was the unexpected ability to set that aside and succeed despite the issue that arose, as one issue or another often does, and to find that success without putting up my mama bear hackles or navigating a series of negotiations and concessions (although we did end up navigating quite a series of concession stands!), but rather by simply accepting an act of kindness offered for no other reason than that someone saw an opportunity to help, and did so.

None of the things that I’ve described are major (or frantic or desperate) obstacles to anything, on their own. But they permeate every fiber of my being and every moment of my life. It’s not something I’m constantly conscious of; but it does very much shape how I approach the world. I have come to expect to have to row against the current, and so an encounter like this comes as a much-needed reminder that we don’t have to do it all alone, after all, and that people are generally good.

Thank you, to all those of you who have shared our story, sent your love and shared stories of your own. I hope you keep reading. And to anyone else out there struggling against the current – don’t hesitate to reach out. You are the reason I write, and maybe together we can turn the tide.

Yadi Shirt in the Swing cropped

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Breast is Best – except when it isn’t

It’s National Breastfeeding Week. Here’s what else “Breast is Best” means to struggling mothers.

BottleI am 100% pro-breastfeeding.

By that I mean I am 100% in favor of giving mothers all of the necessary information and resources to have the best chances of successfully breastfeeding if they so choose.

I’m conflicted, though. A lot of pro-breastfeeding rhetoric sets up many mothers for a lot of unnecessary guilt and pain.

For example, take the first sentence on the World Health Organization’s breastfeeding page: “Breastfeeding is the normal way of providing young infants with the nutrients they need for healthy growth and development.”

In other words, if you have trouble breastfeeding, you’re not normal.

The second sentence is worse: “Virtually all mothers can breastfeed, provided they have accurate information, and the support of their family, the health care system and society at large.”

If you have trouble breastfeeding, you’re not normal, AND you’re probably not trying hard enough.

Throw in this laundry list of the benefits of breastfeeding from womenshealth.gov – protects your baby from asthma, childhood leukemia, childhood obesity, ear infections, eczema, diarrhea and vomiting, lower respiratory infections, necrotizing enterocolitis, SIDS, and diabetes – alongside studies showing breastfed babies have higher IQs and stronger bonds with their mothers and you’ve got the trifecta:

If you have trouble breastfeeding, you’re not normal, you’re probably not trying hard enough, AND you’re clearly ruining your child.

This is dramatic. I get it. Except, it’s kind of not. Scientific literature tells us that breastfeeding saves thousands of lives, and that it’s our duty to breastfeed in case of another Holocaust (actual quote: “Our role as caretakers is to prepare for [disasters] and not compound their consequences by disrupting the natural order of infant feeding (e.g., breastfeeding and the use of human milk). […] Those infants who were born into the horrors of the Nazi camps and survived proved it, and that should be enough to convince the doubters”). Even without those extremes, I know many women who have experienced significant amounts of guilt about not producing enough milk, not being able to nurse, and/or needing to supplement or switch to formula entirely.

There are a number of reasons women are unable to exclusively breastfeed, or choose not to do so. Here are a few:

  • Insufficient supply
  • Poor latch
  • Poor response to the pump
  • Lack of support from family
  • Lack of support at work
  • Lack of information about navigating difficulties
  • Expense of pumping and properly storing milk (especially as opposed to free formula via WIC)
  • Mastectomy (check out this cancer survivor’s story)
  • Absence of lactation due to extreme prematurity
  • Aversion to breastfeeding due to history of sexual abuse
  • Medications that are not compatible with breastfeeding

Aside from the fact that, in this day and age, lack of family and employer support and lack of information are a damn shame, all of these (and many others) are perfectly legitimate reasons to choose formula or supplementation. And while there are a number of studies demonstrating the benefits of breastfeeding to both mother and baby, there are also studies showing those benefits may be negligible at best. Why, then, must we always talk about breast-feeding as easy and natural and any other form of feeding as less-than?

One very important answer to that question is that society has not entirely caught up with women’s rights. We need to emphasize the importance of being able to choose breastfeeding in order to guarantee working mothers rights to adequate space and time to pump, and to protect the rights of all mothers to breastfeed whenever and wherever they need to do so.

All too often though, the voices speaking out to protect women’s right to choose to breastfeed turn that choice into an imperative. It’s really, really hard to defend the value of breastfeeding in a way that is strong enough to combat an employer’s or an anti-NIP mega-prude’s ability to say “just use formula instead,” without overselling the benefits of breastfeeding in a way that implies that mothers who have difficulty breastfeeding or choose to use formula are failing their babies.

So we have a very real need to tout the very real benefits of breastfeeding in order to protect the rights of women to choose (breastfeeding), while also navigating a very real need to not exaggerate the actually maybe-not-so-significant benefits of breastfeeding in order to protect the rights of women to choose (not to breastfeed).

Now that we’ve muddied those waters, let’s further complicate this mess by adding in medical complexity. When you add in prematurity and chronic illness, all of that muddiness is amplified. More is at stake; the potential benefits are more significant, and the potential pain is greater.  

Let’s say there’s a mother, we’ll call her “A,” who has an infant son, let’s call him “L,” who gets most of his nutrition from TPN. A was really looking forward to breastfeeding, which she expected to come naturally for her, but instead L was born with a gastrointestinal condition that made him unable to nurse for months after birth. A pumped freezers full of milk, determined to make nursing work sooner or later (because how could she ever create a strong bond without nursing? She would definitely never end up with a mother-obsessed toddler who must not only sleep in the same bed as his mama, but also on the same pillow….) or at the very least provide enough breastmilk to get him through as long as possible, since she’d been told breastmilk would aid in gut rehabilitation.

Let’s say that when L was about 7 months old, a less-than-helpful gastroenterologist made A feel like all her pumping was essentially futile because L still wasn’t drinking all that much, and she already had more than enough breastmilk in the freezer to get him well past his first birthday. And then, let’s say when L was about 15 months old, he started a downhill slide that ended in an emergency blood transfusion and a return to TPN, and that just happened to coincide with A’s freezer stash running out.

Any number of things could have contributed to that downhill slide – the most obvious answer, which seemed pretty clear to L’s new, more supportive GI team, is that he wasn’t ready to be off of TPN just yet – but with all the breastmilk rhetoric out there, you can bet your buttons A will wonder for the rest of her life if she should’ve just kept pumping. Because maybe that downhill slide was all her fault.

Or, consider a mother who gave birth to a 24-weeker and was unable to induce lactation with a pump. A few weeks into their NICU stay, her preemie develops necrotizing enterocolitis (NEC), a devastating disease that destroys the bowel. She already feels like she’s failed her baby several times over, since she was unable to carry him to term and was unable to lactate and can’t even hold him when he cries silently around his vent tube, and she’s trying to wrap her head around a diagnosis she can barely pronounce, and now she’s being told by science and the WHO and a holier-than-thou crusader of a lactation consultant and all of the women in the organic foods aisle that breastmilk prevents NEC, so by the transitive power of sanctimommy her baby’s condition which will plague him for the rest of his life is her fault. Her baby MIGHT ACTUALLY DIE because she couldn’t convince her nips to give up the all-natural goods.

The thing is, in any individual case, you can’t know if breastmilk or formula made a difference. I can’t go back and try again with L to see if keeping him on breastmilk longer than 15 months would have produced different results. It probably wouldn’t have, but I can’t know, and so there will always be guilt.

Moms in our online short gut group who attribute their babies’ positive outcomes to breastmilk – they can’t know if their baby would have had worse results on formula. Moms whose preemie and short gut babies have struggled greatly on formula – they can’t know if their baby would have had better outcomes on breastmilk. 

Overall, yes, studies have shown that breastmilk is better for preemie populations, and so it really is very important to encourage moms to try to pump and provide them all the support they need to do so. But how do you continue encouraging mothers to try everything in their power to pump enough milk for their babies to feed exclusively on human milk, because maybe it could save their lives (although maybe in any particular case it would make little real difference), without making those same mothers feel like their baby’s struggles are all their fault if they can’t produce milk, when they already feel like they have failed at the fundamentals of motherhood?

I don’t have an answer. But I do know that the answer is not a careless chorus of “Breast is best.”

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Hi there, it’s me, your friendly neighborhood raincloud

Why keeping casual conversation casual can be really hard

There are several women in my office who are currently pregnant, have recently returned from maternity leave and/or have toddlers. That translates to a whole lot of talk about pregnancy, childbirth and the newborn stage.

I often don’t join in these conversations. I’m the weirdo standing there awkwardly listening and not saying anything. Not because it’s too painful to talk about what happened with L, because it’s mostly not anymore. Rather, it’s because I don’t know how to insert myself into these conversations without feeling like a giant raincloud.Grumpy

←This is my raincloud face. I think sometimes this is what I look like all day without meaning to.

The things I have to say are most definitely not intended to garner sympathy; they’re things that have become normal parts of our lives. But they are often things that you can’t really just drop casually into conversation with people who don’t know much, if anything, about L’s health issues. For example:

Friend 1: “Wait, they have different mattresses for labor and for postpartum?!”

Friend 2:“Yeah, my hospital did.”

Friend 3: “Mine did too – labor mattresses in labor rooms and postpartum mattresses in separate postpartum rooms”

Friend 4: “Mine definitely didn’t. They just changed the sheets.”

Friend 5: “My labor mattress was sooo uncomfortable!”

Me: “L came so fast that I wasn’t in the room long enough to really notice much about the mattresses and I actually don’t know whether or not they typically have separate rooms for labor and postpartum because I was moved to a NICU mom floor, and also I don’t remember some of the details of the first couple of days because I was in shock from the trauma of it all.”

/conversation killed.

Friend 1: “How long do you have to keep a newborn at home before you take them out in public?”

Friend 2: “Well everybody has different opinions on that. I waited about a month.”

Friend 3: “I wasn’t very cautious with my second, we took her out in public after just a few days.”

Friend 4: “I think anywhere from 2-6 weeks is pretty typical.”

Me: “Oh, I wouldn’t know because my son didn’t leave the NICU until he was 4.5 months old and then we had to be extra careful because every little cold or fever would land us back in the hospital.”

/conversation killed.

Or, they are things that I intend to say in the interest of empathizing, only I have to censor my full experience to make sure it doesn’t come across as “consider yourself lucky and stop complaining because it could be SO much worse” rather than as the relatable “we’re all in this motherhood boat together” comment I intended:

Friend: “My kid is so picky! I don’t know what to do anymore. Dinnertime is miserable. It’s a constant battle and I feel like I’m constantly losing it.”

Me: “I know what you mean. I know it’s normal for toddlers to be picky, but L has such a short list of foods he’ll eat, and then we have to make sure he doesn’t eat things that won’t pass through well, and some things he used to eat he stopped eating when he was puking so much, and he won’t eat at all when he doesn’t feel good, and if he doesn’t eat he won’t grow and will have to go back on TPN and it does feel like it’s a constant battle that’s all on me and it’s all my fault if I can’t have successful meals. I think we have to try not to put so much pressure on ourselves, but that’s really hard.”

Friend: “My child will. not. sleep. I’m at the end of my rope. I feel like I have a newborn again!”

Me: “L won’t sleep without me these days either, which is weird because that never happened before a couple hospital admissions last fall where I slept in the hospital bed with him. He actually wouldn’t LET me lay down with him before that! He never even slept in our room as a baby because he was in the NICU, and then when he came home he was hooked up to IV fluids and for a long time we strapped him into a Tucker sling so we could dramatically elevate his crib mattress to prevent him from choking on his puke in the middle of the night. Honestly though, I miss sleeping in my own bed but at the same time I really like those nighttime snuggles. We just have to do what works for us right now, and trust that it won’t last forever.”

Friend: “My daughter HATES tummy time and I’m worried she’s not going to get strong enough….”

Me: “L couldn’t do tummy time for a long time because he had so many abdominal surgeries and an ostomy bag, so the NICU physical therapy team taught us that there’s this neat way to recreate tummy time where they’re sitting on your lap and not laying down at all!”

Sometimes my potential contributions to these conversations are jokes – to me:

Friend: “You know that newborn smell? I just loooove that newborn smell!”

Me: “Mmmm, me too, the sweet smell of sterile gauze and chlorhexidine….”

Why isn’t anybody laughing?

I’ve never been made to feel like I shouldn’t share our story – in fact, I’m fairly certain the women I talk to every day would be wonderfully understanding and would hate to know that I frequently censor myself. But I often stay silent because it’s easier than navigating the awkward silence or sympathy that would almost certainly follow, or going into a long explanation that immediately switches the conversation from a casual chat among friends to a serious talk focused on me. Many people at my office don’t know about L’s medical struggles, and while it’s nice to be able to have casual conversations about my child rather than always talking about my sick child, sometimes that omission feels like I’m hiding our difficulties, which doesn’t feel great either. It would be nice to be able to have casual conversations about my sick child, but I haven’t found that balance just yet.   

I’ll keep working on it. Until then, please know that if I make a casual comment about something that seems alarming to the rest of the world, I probably really just meant for it to be a casual comment. If I slip up or open up about things that are harder for us than they are for you, I’m not trying to engage you in the Pain Olympics; I’m just throwing in my experience with yours and trying to give and receive the points of connection that we all need. If I’m silent, it might be because there are too many things that I don’t know how to say casually, or because I’m protecting myself or you from a conversation I don’t want either of us to have, or because I’m taking a moment to weigh whether my hilarious medical joke would receive the raucous laughter it clearly warrants or would instead be met with blank stares.

And if I say “I’m tired,” or “that’s hard for us, too,” there may be an entire onion of meaning behind those simple words. Don’t be afraid to ask; I don’t mind peeling back a few layers, and sometimes I need to – but it can be awfully hard to start.  

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Why nothing is simple: Bellyaching about bellyaches

Recently L has been talking a lot about his belly hurting. He has been vomiting only occasionally, but he tells me frequently he needs to puke. There’s nothing super worrisome going on, but his belly has been swollen and he has spells on a lot of days where he very clearly doesn’t feel good in between playing happily.

Here is a glimpse into why, for us, a bellyache is awfully complicated.

When he tells me his belly hurts or he needs to puke, it could be:

  • A stomach bug
  • His belly hurt earlier and he is three and he likes to repeat things
  • He ate something that would upset anyone’s stomach
  • He ate something that wouldn’t upset most people’s stomach, but it’s upsetting his
  • He wants to get my attention
  • His many supplements and vitamins are upsetting his stomach because he didn’t eat enough
  • He ate too much
  • He ate a normal amount but for whatever reason it’s moving through a little too slowly
  • He wants to watch a movie and I let him have extra screentime when he doesn’t feel good
  • He ate something that got lodged in his gut somewhere and is causing irritation (he once puked a strawberry he had eaten a full two weeks earlier)
  • He has an overgrowth of gut bacteria causing a buildup of gas, which can lead to swollen belly and vomiting (since bacteria feed on sugar and he lives on carbs, and overgrowth is common in guts with poor motility)
  • He recently learned what a “puke bowl” is and thinks it’s fun
  • He needs to poop
  • His belly feels a little off and the easiest way to tell me about that is to say he’s going to puke
  • He doesn’t actually feel bad but he doesn’t want me to touch his g-button right now
  • It’s bedtime and he wants to get out of bed
  • Overnight tube feeds are finally catching up to him and we need to give him a break from them
  • Other very unlikely but much worse possibilities that I try not to think about because very unlikely and also terrifying

Because we hardly ever know exactly which one (or combination) of these things it is, the ideal response could include:

  • Getting him to eat something
  • Not pushing him to eat because it will upset his stomach more
  • Skipping overnight tube feeds for a night
  • Giving him attention
  • Taking him to the potty
  • Letting him pretend to puke in a “puke bowl”
  • Waiting for him to actually puke to clear out whatever the problem is
  • Getting him to eat a balanced, low-carb diet (excuse me while I take a moment to double over in laughter)
  • Letting him have some screentime and teaching him he doesn’t have to fib about puking in order to watch a show
  • Treating stomach bug or bacterial overgrowth with antibiotics
    • This is complicated for reasons I’ll explain in a minute
  • Teach him not to cry wolf
  • Tell him it’s time for bed and he’s not getting up to pretend to puke or poop when he doesn’t really need to.
  • Let him get out of bed to poop or puke
  • Panicking about the potential for very unlikely but terrifying scenarios and rushing to the ER (for the record, we’ve never yet felt the need to do this)

Now, I’m no mathemagician, but if my calculations are correct that multiplies out to roughly 1.2 kajillion possible combinations of cause and response. And the thing is, at any given moment we are very unlikely to know the actual cause, so we have to guess at the appropriate response.

So it gets messy. (Literally.)

Potential consequences of choosing the wrong response:

  • Pushing him to eat when he shouldn’t might make him vomit, which would result in fewer net calories than just letting him not eat to start with. Over time, if this happens too often it will lead to weight loss and dehydration and he’ll have to go back on TPN
  • Not encouraging him to eat when he needs some food in his belly might make him feel worse, and if he misses out on too many calories over time he’ll start to lose weight and he’ll have to go back on TPN
  • We can’t decrease his vitamins, so if it turns out he’s miserable because the supplements upset his stomach, he’ll need IV vitamins and/or TPN
  • Trying to enforce a balanced, low-carb diet will mean he will never eat anything ever except maybe bacon
  • Letting him get out of bed to poop or puke when he is fibbing about it just to get out of bed will lead to neverending bedtimes every night
  • Not letting him to get out of bed when he needs to poop or puke will lead to a big mess and probably permanent psychological scarring from having a terribly mean mother
  • Trying to teach him not to cry wolf might make him feel like he shouldn’t tell me when he really does need to poop or puke. See above re: psychological scarring
  • Skipping overnight tube feeds might make him eat more, and one-night trials of this have gone well (yay!) but if he’s not absorbing what he’s eating he’ll start to feel worse and worse, eat less and less and end up back on TPN
  • Too much screentime will clearly turn him into a hyperactive slush-minded psycopath, because studies
  • Antibiotics wreak havoc on his gut so they are an absolute last resort, and also the usual suspects to treat overgrowth have not been successful for him. If he has significantly increased diarrhea/vomiting due to antibiotics, he will dehydrate and lose weight and end up back on TPN
  • Assuming that very unlikely, terrifying possibilities are not the cause could lead to the worst, or could lead to more surgeries and more lost bowel, which would mean ending up back on TPN, possibly indefinitely.

See any patterns there?

I think the pervasive state of acting within these unknowns is one of the hardest things to really understand for people looking in from the outside. If you’ve never dealt with complex chronic illness, it seems like there should be diagnosis → treatment → health, but for us it’s constant managing and balancing, and I want to really emphasize the constant part of that.

There’s a clear diagnosis, but that diagnosis comes with all sorts of secondary and tertiary issues that are not always so clear. Each issue, even if we can pinpoint the actual source of the problem, may have a different appropriate response for different people’s bodies, or on different days with the same person. Often the best option is choosing the lesser of two evils, which makes those choices extra hard – for example, we are constantly focused on weight gain and nutrition, so in a scenario where he doesn’t want to eat and I suspect pushing food will make him vomit, but it might actually make him feel better or stay the same, it’s hard for me to accept skipping those calories, because I’m supposed to be making him grow. For us, every facet of taking care of L is permeated with navigating those unknowns and balancing acts.

In any case, the vast majority of the time it’s nothing, or at least just the same old stuff. But because of all these unknowns, and because this has been going on long enough, we’re going in for some imaging next week to say hi to the old malrotated small bowel and see what it’s been up to in there. This might seem stressful, but it’s actually a pretty routine thing for someone with significant bowel issues, and I have spent enough time thinking about all the worst scenarios and wondering how to respond to the everyday scenarios that it should actually be a relief to have visual confirmation of what, if anything, is not quite right.

Say cheese, Frankentestine!

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NOT KNOWING

In my last post I described a moment in which I allowed myself to think, “Things are really going well for us.” This sentence was significant because I formed it very deliberately, feeling out each word in my head against my strongest instincts to not let myself get too hopeful.

There’s a second reason why this thought was significant, though, and that reason didn’t even occur to me until several minutes after the thought came into existence, which just amplifies the reason why it’s so very significant:

I had this thought while L was still on TPN.

If you had asked me a year ago – a few months ago, even – I would’ve told you I couldn’t feel like things were good while L still had a central line. And there I was, gushing to myself about how great my life was going without even registering that L still had his line.

I’ve already outlined why his line is the bane of our existence. That hasn’t changed. But somewhere along the way, it’s become so normal for us that it doesn’t feel horrible anymore. We’ve adapted.

For a very long time I clung to the thought that someday L would be fixed and we could move on. It took me a very, very long time to wrap my head around the fact that we might never reach a point where we could say things were finally, definitively good. I think in the first weeks and months my brain might have refused to entertain that notion out of self-preservation – if I had really comprehended from the start that we would be living in this state of NOT KNOWING for the rest of our lives I’m pretty sure I would’ve short circuited right then and there.

So I spent L’s entire first year devoting all my energy to trying to get rid of his central line, and thinking that once it was gone we would finally be in the clear to move on with our lives. I threw a party when he became line-free. And I explained away the signs that he was slowly declining, even though in retrospect it is obvious that he still needed TPN. That summer was The Bad Summer, and it was hell – but GI was trying to let him succeed without TPN, and I refused to admit to myself that we might have to take a giant step backward until his labs suddenly plummeted and we wound up in the hospital for an emergency blood transfusion. Even then, I fought tooth and nail for anything that might keep us from having to re-place a central line; I raged, I cried, I yelled at residents; but he needed it back, and back it came.

After our first round of trying to shed L’s line failed miserably and I realized how much better things were for us after we took that big step back, I thought that I had become more okay with NOT KNOWING. But I hadn’t, not really. I had realized I probably needed to be more okay with dwelling in the in-between space – progress! – but I still spent all my energy trying to claw back out of it. We spent seven months last year living month-to-month, thinking all the while that maybe this next appointment will be the one where she says we can pull it, or maybe just one more month, and now just one more month again. Only he didn’t gain weight, and at every appointment he showed one deficiency or another or several. But going without TPN wasn’t failing either; he didn’t lose a significant amount of weight and his deficiencies weren’t that severe. And so we waited, in medical purgatory. I thought that I had grown stronger, but I still had a long way to go.

There is not a single point at which I suddenly became okay with that pervasive NOT KNOWING. But there have been several small moments that made me realize how far I’ve come. That day in the car was one of them – for a brief moment, the fact that I could forget about TPN took my breath away. Another came last winter when a fellow intern and I were commiserating over job search woes; neither of us knew what was coming next, and I recognized in her the same kind of overwhelming anxiety-riddled impatience with NOT KNOWING that a few years ago would have kept me up at night and tied my stomach in knots, and realized that instead I was strangely calm in the face of this particular round of NOT KNOWING.  

Don’t get me wrong on this – I have not transcended to a higher plane of zen acceptance of uncertainty. I had not found some noble way to be at peace with the fact that the final weeks of my already-pitiful intern income were looming and if I didn’t land a job we would be plunged into exponential debt almost immediately, andplusalso I might have made a really bad gamble with signing on to be a 30-year-old intern to begin with and my whole entire future was hanging in the balance and could come crashing down at any minute. No, I can’t say I was really at peace with that. If I were to guess, I’d say the parts of my brain that should’ve been going up in flames about all that are just burnt out. They have been overworked to the point that they have packed it in and are waving a permanent white flag.

But you know, if those fried neurons allow me to have moments of calm where there used to be moments of rage and panic, I’m okay with being a little burnt out.

I promised I wouldn’t spit shine things that ought to stay ugly. I would never, never, promise someone going through hell that things will get better, because sometimes they don’t. But honest doesn’t mean devoid of hope. So here is an honest message of hope for anyone who might find these words at a point when you think you can’t keep going:  

Sometimes it doesn’t get better. But you get better at it.

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Welcome to This Gutsy Life

gutsy  \ˈgət-sē\ adjective

  1.    marked by courage, pluck, or determination.
  2.    a: expressing or characterized by basic physical senses or passions. b: rough or plain in style: not bland or sophisticated.

 

I’ve been wanting to start a blog for a long time. Nearly three years now, to be precise. I was held up for two reasons:

I couldn’t think of a name.

Now, that’s kind of a stupid reason and also doesn’t exactly sell you on my wit and creativity as a blogger. Way to kick things off, me. But I didn’t want just any name, I wanted the name. “No Guts, All Glory” is already taken, and as much as I love a good poop pun, “Poop, There It Is” or “Shit Doesn’t Always Just Happen” just weren’t cutting it for the project I was imagining.

But the real reason – the massive, paralyzing, skeleton-in-my-closet-that-I-sometimes-can’t-admit-exists-even-to-myself reason – is this:

It’s been really, really hard to be honest.

We’ve been through a lot in the last few years. Throughout, I have been told that I’m brave, that I’m strong, that people admire my ability to stay positive and keep a sense of humor. The truth is, I am often the opposite of all those things – you just don’t see it. It’s far easier to turn a hopeful, sugarcoated face to the world than to invite pity or admit that sometimes I’m a selfish, anxiety-riddled asshole who occasionally – or frequently, especially in that first year – just wanted to quit. I didn’t want pity, and I didn’t want people to know I was so very flawed, and so I mostly tucked those things away to silently fester. I couldn’t be honest. I didn’t have the guts.

But to try to represent our journey in a way that denies or glosses over the ugly parts rings painfully hollow. This life can be rewarding, inspirational, filled with joy – but it is also so goddamned hard, and sometimes the hard parts don’t have any redeeming qualities or a bright side, they’re just really goddamned hard. I couldn’t bring myself to write a blog that pretended that soul-crushing side of things doesn’t exist, not least because it could be damaging to anyone who might stumble upon my words in the depths of their own struggles. And so I didn’t write.

In the last three years, I have done a plethora of things I didn’t know I had it within me to do. These things were not brave. They were necessary. I can’t tell you how many times I have heard someone say they could never do what we do – but that’s simply not true. I’m a mother, and I do what’s necessary, and you would too. Writing these words feels like the first truly brave thing I have done.

And so I’m mustering my courage and setting out to be honest. I’m going to leave now and hit publish before I chicken out, because I’m still not really all that brave. But I’ll leave this promise here: This is a place for honesty. Sometimes it will not be beautiful; sometimes it will not be inspirational; often it will be covered in shit. And yes, there will be loads of crappy poop jokes. That’s this gutsy life.

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