‘Just the way you are’

Five years ago today I read L his very first bedtime story. Here we are:

6962E36D-DE21-4DD7-9F36-E44780F7CB49

Ahhh, the glow of new motherhood. At the time this picture was taken, L was almost exactly 24 hours old and had already had his first major surgery. I was sitting on a padsicle, wearing gigantor mesh underpants and whatever random clean clothes a family member had grabbed to bring us to change into (as it happened, those random clean clothes were matching red gym shorts and gray t-shirts for both me and Z – adorbs!). And I had been crying for the better part of 24 hours, as you might possibly be able to tell by the swollen red horror show that is my face.

24 hours in, we were trying to wrap our heads around what was happening to us and clinging to any semblance of normalcy we could find. L had arrived suddenly, six weeks early, with a birth defect we had not known about previously, and had been whisked off to surgery where it was discovered he had lost most of his small intestine and would need another surgery eight weeks later. At this point he was still sedated and intubated, and I was overwhelmed with a new diagnosis and was being bombarded with unfamiliar medical terms and wasn’t sure if L would ever be able to eat anything ever and didn’t know what his future held, and was trying not to face the unspoken if he had any future at all part of that statement.

And so to cope, in the midst of all these things that were not okay, we had gathered some children’s books, and we were reading L his bedtime story.

I will be honest: I’m pretty sure Z picked Corduroy. I don’t think I even really remembered the story at the time, and I can’t imagine I would have chosen it over several others I was more familiar with. But I was physically and emotionally spent and didn’t have the strength to make a decision, and so Z chose a book, and I read.

I have struggled to explain the extent to which L and his diagnosis are completely separate things for me. I love L more fiercely and fully than I ever knew was possible, and at the same time I so desperately wanted to wake up from the medical nightmare of those first weeks and months that stretched into years. I have wanted out a thousand times over; but that is directed entirely at the diagnosis, the medical struggles and all the suffocating stressors that come with them – which are physically part of L, but for me have never been part of who he is. From the moment he arrived, even when I was slow to bond because of the shock and trauma of those first days, I never once thought of L as anything but my sweet, perfect child. Misfortune had happened to all of us, L included, and it was that misfortune that I railed against, not L, because he was not the misfortune — but how could anyone understand that distinction if they hadn’t experienced it? I have struggled myself to understand how it’s possible to be 100 percent full of each of two emotions that are so strongly at odds with each other you think they might rip you apart from the inside out. How could I possibly put that into words that anyone would understand?

And yet here, on these pages, it is explained perfectly in the simplest of terms:

7C5AAD04-BFD1-445C-A7AC-902366CF0B6D

In retrospect, it’s hard not to note the parallels; the innocent baby who had no idea there was anything less than perfect about his little body; the arduous journey we took before we were able to come home at last; even right down to sewing on a new (Mic-Key) button. Looking at the first pictures of us in L’s room, I can’t help but project Corduroy’s surprise and delight at seeing his new home.

But perhaps most fitting of all was the hand-written note in this particular copy of Corduroy, penned before L even had a name yet, and well before we knew anything was out of the ordinary with this pregnancy. I’m sure I had read and appreciated the inscription when we received this copy of the book, but had not really thought all that much about it, if I’m being perfectly truthful. It’s the kind of sage wisdom that seems like common sense until you are faced with a situation in which common sense is out the window — and then it becomes the thing you most need to hear in all the world.

There, in a dim room in the NICU, in the middle of all the tubes and beeps and pain and fear, when I didn’t know what the future would hold or how I could possibly face it, were these words:

FDDB9793-3018-4AD6-B5D1-FCF08D8F1404

On the anniversary of our 5 years together, L, I am so proud of the kind, compassionate, intelligent, brave person you are becoming. May you grow to climb mountains and explore vast palaces; and no matter how far you roam, may you always come home to a little bed just the right size for you, and friends who love you just the way you are.

Follow @ThisGutsyLife on Twitter

Advertisements

Happy Teacher/Nurse Appreciation Week!

This week is Nurses’ Week. It’s also Hospital Week, or, if you work at my office, Health Care Week, because we want to be inclusive of our friends in ambulatory and post-acute. And at L and G’s daycare and preschool, it’s Teacher/Nurse Appreciation Week. They celebrate this particular combo observance because they attend a school founded by a pediatric nurse that includes a room for children with all sorts of medical complexities, staffed by nurses; it’s only fair to celebrate both teachers and nurses in the same week, since at this school those roles overlap to such an extent.

It strikes me, as we prepare our cards and treats for Teacher/Nurse Appreciation Week, what a fitting observance this really is.

In the first days and weeks, as we began to wrap our heads around new diagnoses and devices and tests results, it was our nurses who gently helped us expand our vocabulary and patiently repeated and explained again and again until we began to enter conversations with confidence.

Nurses taught us to navigate the basics of parenting in a setting that seemed so hostile to normalcy. It was a nurse who helped me learn how to hold my child, who seemed so fragile at the time I was afraid I would break him. It was a nurse who helped me learn how to change a diaper around tubes and leads and a surgical incision and an ostomy bag, and who taught me how to change the ostomy bag as well, and, later, how to change a sterile dressing, all of which became routine baby care for our family.

Nurses, too, taught us how to fiercely preserve our normalcy despite a setting that seemed so hostile to it. It was a nurse who fought for permission to take our son for walks in the courtyard, and took the time to play photographer in an impromptu family photo shoot while we were outside. It was a nurse who encouraged us to bring in a playmat and a swing, and to establish a bedtime routine before we had even left the NICU, and stepped in to read L his bedtime story when severe storms prevented us from coming to the hospital one night.  

Those same nurses taught us how to transition home, and continued to offer listening ears and guidance off the clock as we learned to navigate difficult medical relationships and how to advocate for our child.

As parents of a child with a long medical history, we are deeply indebted for the incredible healthcare we have received from a countless string of nurses; L would not be here without them. But alongside that, every step of the way and especially in those early weeks and months, we are equally indebted to our nurses for the role they have played as our teachers. We are grateful, this week and every week, to the nurses who have equipped us with the skills and confidence to become the parents L needed.

What have you learned from nurses? Leave a comment below to share how they’ve made a difference in your life!

Follow @ThisGutsyLife on Twitter

My most important resolution for 2018

Two weeks ago I went to see The Last Jedi.

This was significant for a couple of reasons. First, omg new Star Wars! I may or may not have actually teared up the first time I saw Rey and Finn board the Millennium Falcon in The Force Awakens. It was like seeing a part of my childhood come to life. (Even though it was a set on a movie screen. I know that doesn’t really make sense. Judge me you must not.)

The truly significant thing about this moviegoing experience, however, was that it was the first time I had ever gone to a movie by myself. I left my four-year-old and my two-month-old at home with my very capable husband, stashed a cold brew in my purse, and went to a 9am show on a Saturday morning. I didn’t have to bring a diaper bag or 12 extra snacks. I didn’t dress for nursing access. I peed by myself. I ate my breakfast popcorn one kernel at a time like I used to do ages ago before I was sharing it with somebody. I felt free.

And the whole time I was there I felt like I was getting away with something. I was away from the house for a mere three hours, my kids were well taken care of, I had made sure my family had everything they needed before I left the house, and my husband had gone to see it by himself the day before so I wasn’t even being selfish. Tickets to the 9am show cost $5 so it hardly blew our budget. My smuggled coffee was the only really questionable part of my outing. I knew it was fine to be there alone. But it still felt like I was pretending to be somebody else for a morning; like this level of freedom and indulgence was somehow not allowed in my life.

The same feelings bubbled up this past Sunday, unexpectedly, at home. Z and I were both in the kitchen together, at the same time, with all four of our hands free, making breakfast and brewing good coffee in my brand new Chemex and chatting about our plans for the day, when suddenly I felt a stab of guilt. I could see both kids, just a few feet away. L was engrossed in a kids’ show (and an educational one, to boot) and G was waving her arms and kicking and cooing happily on her play mat. And instead of pondering this wondrous miracle that was both kids content, at the same time, without any parental assistance at all, I found myself inexplicably wondering if I was being a bad mom for taking time to make slow coffee instead of snuggling my babies.

I imagine this sense that I shouldn’t be enjoying myself just for me has been exacerbated by our medical struggles, which for us coincide exactly with becoming parents. For a long time, L was hard to take out in public and could only be left in the care of an IV-certified nurse, so we didn’t do anything. In between appointments and therapies and frequent hospital readmissions, we stayed at home where we had extensive medical duties and often oppressive worries on top of all the regular stress of parenting. There were many days when we literally could not spare a moment for ourselves. His health required constant management, and we rarely got breaks.

We tried, we really did. When you are a long-term NICU parent, people are quick to remind you to take care of yourself, too, and we knew we would be long-termers from day one. We even took a day in the middle of his 4.5-month NICU stay, when he was completely stable and simply awaiting another surgery, to go swim in the lake so that we could, momentarily, feel normal. But we didn’t tell anybody we did that. I didn’t tell anybody that most nights, during those stable NICU weeks, I went home and slept like a rock. Because the expectation is that it will be immeasurably hard, that it will be the most miserable stretch of your life (rightly so, in many cases); and if I could swim, if I could sleep, maybe I wasn’t properly worried, properly miserable, properly parenting my son. People encouraged us to take care of ourselves, and we did so, but never without guilt.

I think this was amplified by our medical journey, but I also know that this mindset is not unique to parents of medically fragile children. It’s so easy to get weighed down by the responsibilities of parenthood, to feel consumed by the needs of these tiny humans who depend on you so utterly, and to feel guilty about doing anything that mommy-guilt will translate into selfishness. It can feel impossible to scrape together 30 minutes for a workout when your clingy toddler wants to play and cuddle every second of every day, or to spend an evening reconnecting with your spouse over a dinner date when you’ve already spent all day away from the kids at work. There are only so many hours in a day, and parenting takes all of them.

My New Year’s resolutions for 2018 include the usual suspects: making healthy choices on the diet and exercise fronts, reading more, having regular date nights, being more present when I’m with my kids, paying off that last student loan ahead of schedule. I have resolved most of these things before, and in many cases I’ve failed. But this year I’m adding one more resolution into the mix, which I think may be the key to success for nearly everything else: shedding the guilt.

This year, I will take time for myself when I need it. I will take advantage of my support system. I will occasionally do things because I want to. I will allow myself to enjoy things that are not centered solely around my children. I will know that it’s okay if I don’t get everything done all in one day, but also that I’m often capable of more than I think. I will remind myself that things are not always hard just because they have sometimes been hard. I will make time to work out and read grown-up books and have date nights, and not feel like I am stealing that time from my kids. And we will all be better off because of it.

And when I falter, as I inevitably will, I will reread these words and renew my resolve, because I don’t have to do it perfectly for it to count.

Whatever your resolutions are for 2018, take the time to make it happen without guilt. I know exactly how hard it can be to make space in a busy life, but it really is okay to take some time for yourself. You need time for yourself, even if the most you can eke out in a harried day is a few seconds of deep breathing to recenter before you dive back in. The people you care about most will be better off if you are your best you, so do it for them if you need some help over that mommy-guilt hump — but if you can, simply do it for you.

You’re worth it.

Follow @ThisGutsyLife on Twitter

‘No parent should ever have to decide if they can afford to save their child’s life.”

Jimmy Kimmel recently opened up about his newborn son’s unexpected open heart surgery, in an emotional, heartfelt monologue that touches upon the rawness and vulnerability of suddenly finding yourself in that terrifying situation as a parent. As I watched him struggle to give voice to their story so soon after it had happened, I was plunged back into the raw emotion of our own first week with L; and his takeaways resonate deeply:

“We were brought up to believe that we live in the greatest country in the world, but until a few years ago millions and millions of us had no access to health insurance at all…if you were born with congenital heart disease like my son was, there was a good chance you’d never be able to get health insurance because you had a pre-existing condition. You were born with a pre-existing condition and if your parents didn’t have medical insurance you might not live long enough to even get denied because of a pre-existing condition. If your baby is going to die and it doesn’t have to, it shouldn’t matter how much money you make.

“Whatever your party, whatever you believe, whoever you support, we need to make sure that the people who are supposed to represent us, people who are meeting about this right now in Washington, understand that very clearly.

“Let’s stop with the nonsense. This isn’t football. There are no teams. We are the team. It’s the United States. Don’t let their partisan squabbles divide us on something every decent person wants. We need to take care of each other.

I’ve said it before, but it bears repeating: the current health care debate is everyone’s debate. If you think you are safe, consider what’s at stake. If you think it doesn’t apply to you, take a minute to understand the fundamental insurance principle of herd coverage. If you think a child’s right to life shouldn’t depend on her parent’s wealth, this debate is your debate.

IMG_6138Every single day, all across the nation, families face devastating news and difficult choices. And nearly all of these families face those choices with a tiny fraction of the resources available to the Kimmel family. Implementing a new and improved health care system is far from simple, and pleasing everyone is damn near impossible – but it’s not hard to determine right from wrong when it comes to such a fundamental issue. As Jimmy so simply and poignantly stated, “No parent should ever have to decide if they can afford to save their child’s life.

The GOP’s first health care bill failed, but this battle is far from over. Keep making your voices heard.

Watch the full monologue here.

Follow @ThisGutsyLife on Twitter

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?

Follow @ThisGutsyLife on Twitter

IMG_6301

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.

Follow @ThisGutsyLife on Twitter

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:

img_6078

(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.

img_6058

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.

img_6066

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!

Follow @ThisGutsyLife on Twitter

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

Follow @ThisGutsyLife on Twitter

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.”

Follow @ThisGutsyLife on Twitter