Preventable harm

This morning, at a conference, a healthcare executive spoke about preventable harm and asked everyone in the audience who had been on the receiving end of a clinical error, either personally or through a loved one, to stand. The percentage who stood was sobering – and I was among them. 

I’ve been working in health care for about three and a half years. For most of that time, I sat next to a Clinical Excellence team committed to eliminating preventable harm, and I learned quite a bit about event reporting and process improvement simply through proximity. 

I’m also intimately familiar with the many times we have received poor quality health care. Every error made in caring for my son is burned into my brain.

But before today, I had never stopped to really let soak in the extent of the preventable harm we’ve experienced, the magnitude of its impact on L and our family – and the lack of action that came from it. 

L’s journey began more than six years ago, at a time when I had never heard of his diagnosis, let alone the ins and outs of event reporting and preventable harm. Many of our “events” seemed like just another hill to climb in a journey across mountains. I was upset that someone had been careless, had made things harder for us during the hardest stretch of my life, and then I moved on to deal with the next thing that inevitably came. But in retrospect, many of these were events that should have been reported and corrected. Many of them were events that caused, or had potential to cause, real harm in our lives.

Among other things: 

One day in the NICU, after I had spent a full 24 hours around the clock implementing a strict wound care regimen to heal the damaged skin around L’s ostomy and had made a lot of progress, I left to teach a seminar. While I was gone, L’s nurse (not one of our regulars) ignored the detailed instructions she’d been given at shift change, and which I had reiterated before I left, for the sake of letting him sleep. When I returned less than five hours later, his belly was raw, weeping and bloody. I set about starting the process of healing all over again. To my knowledge, this was never reported.

Another time, later, L had been admitted for a 48-hour blood infection rule out. He had an ear infection, but with a central line we had to be cautious. Upon discharge, a young nurse disconnected his infusion – a task I performed daily at home, but wasn’t allowed to do in the hospital since I lacked the proper certification. She removed the microclave, which is the first and primary barrier to germs entering his line and should never be removed during a simple disconnect, let his line drop against his chest completely uncapped and gaping open, and prepared to send us on our way. Me – a graduate student in literature who had no clinical training and hadn’t slept in 48 hours – me and my quick action to replace the clave myself was quite possibly the only thing that stood between her error and sepsis. My mama bear reaction startled her, and I imagine she never forgot to replace the microclave again; but I’m equally certain this near-miss was never reported. 

And then there’s another example that in retrospect is perhaps the most egregious I’ve experienced personally, and the one I’ve been dwelling on all day. L spent 131 days in the NICU; we and our amazing NICU team worked very hard to get him well enough to come home, and to make ourselves capable enough to bring him home, as he was still infusing TPN 18 hours a day and we had to learn to manage that. So when we got home, we sanitized the house, locked the doors, and did everything in our power to keep him healthy and out of the hospital. 

We made it 30 days. And then, in L’s second month home from the hospital, he was readmitted multiple times. His line kept occluding every 8 days, like clockwork, and the blockage wouldn’t respond to TPA, so it was replaced, and replaced again, until a seasoned nurse finally dug into the far reaches of her experience and used hydrochloric acid to clear his line. To this day I have no idea if pushing hydrochloric acid into the central line of an infant would alarm most clinicians; but I know that it terrified me. 

The occlusions, it turned out, were a result of our home infusion pharmacy mixing his TPN improperly. The chemicals were reacting with each other to cause a buildup inside his central line, which explained the perfectly regular schedule of his line filling with what might as well have been cement. 



Our little Frankentestine, 5 months old, awaits a surgery he never should have needed on his very first Halloween. 

Due to that error, we experienced three completely preventable inpatient stays – the first on his very first Halloween. My 5-month-old son (just 3.5 months adjusted) had two completely preventable surgeries, two completely unnecessary trips into general anesthesia. He missed a full cycle of TPN, his only real source of nutrition at the time, three times, which is equivalent to an infant fasting for 24 hours on three separate occasions. He gained no weight that month, and grew no inches. His little body was exposed to hydrochloric acid in a channel that, when unclogged, led straight to his heart. And I spent months afterward flying into a panic at the sound of a beeping alarm – on his pump, on our coffee maker, on the washer and dryer.

All of this was completely avoidable, if only someone at a pharmacy had done their job properly. Our medical team’s solution was to switch home infusion pharmacies, and it worked – for us, which was all I had the emotional bandwidth to think about at the time. But to my knowledge, the original pharmacy never knew (or admitted) the harm they had caused, and continued with their processes unchanged. 

I know healthcare is delivered by humans, and we all make mistakes. But the number of deaths each year in the U.S. in which preventable clinical error is a contributing factor is equivalent to a jumbo jet crashing every day with no survivors. Every. Single. Day. 

L has been harmed. My family has been harmed. I have been harmed. And it could’ve been prevented.

We’ve met a lot of incredible clinicians along the way, to whom we owe L’s life and our sanity. We can never repay them for what they’ve given us, and we know that the vast majority of people who work in healthcare want to help, no matter how expertly or poorly they deliver on that promise. So I’m trying to stay true to the foundational quality improvement principle that you should focus on fixing the processes that allow mistakes rather than blaming the people who make mistakes. 

But tonight old angers are bubbling fresh. And tomorrow I return to work with a renewed commitment to do whatever I can to help shape healthcare for the better.


Create Your Own Eggshell Masterpiece

I’m taking a break from our regularly scheduled programming to share with you the best holiday “craft” I’ve ever done, hands down.

The idea came from a pin that I saved and then later realized led to a broken link. Since there aren’t ready-made instructions to point to, I’m taking a moment to write out the steps (which are much easier than I’d expected when I set about to figure this out myself) because you’re going to want to do this.

Seriously, you have to do this. It doesn’t matter if you have kids or not if I’m being honest, I did this more because I wanted to than because I knew L would dig it. I’ve always wanted to make my own faux Jackson Pollock – it’s literally on my bucket list – and this project allows you to be joyful while also unleashing any pent-up frustration you might have lying around in there, and end up with a thing of beauty (or at least a good old-fashioned outdoor mess!).

Get some eggs. Get some paint. Do iiiitttttt.

The sticking point for me when I started trying to figure out how to make this work was how in the world to empty eggshells and then fill them with paint. I googled “how to make a hole in an eggshell” and “how to cut the top off an eggshell.” I learned about fancy tools made for these purposes. I read anecdotes about people’s grandmas preparing blown eggs when they were children. I came across detailed knife-sharpening recommendations. I checked to see if we own an awl (we don’t).

The real trick: don’t overthink it. When it came right down to it, I didn’t need eggs with perfect little holes or with the tops neatly cut off; I needed empty eggshells that could hold paint.

So, to start your project: Take an egg. Take a spoon. Whack the skinnier, pointy end of the egg with the spoon.

6E7A9A3B-FB49-4494-976B-5BFD873109C0That’s it. A good whack or two should crack the end enough that you can pull a few chips of shell off, shake out the contents (I saved the eggs and made a breakfast casserole), and have a big enough opening to easily squeeze some paint into. It wasn’t hard at all – I prepared 20 eggs in less than 15 minutes and I didn’t lose a single shell to accident or error.

Step two: Rinse out the inside of the empty egg shells and let them dry. I’m assuming this might be important, although I didn’t test what happens when raw egg white and paint mix. I actually prepared our egg shells a few days beforehand.

Then, simply fill the empty shells with paint (I used paint that came in a squeeze bottle and filled the shells about ⅔ full), prop a large canvas up against a tree or other surface you don’t mind getting some paint on, and have at it.


The canvas we used is 30” x 40” and was on sale for just $14 at Michael’s. I balked at the first large canvas I came across that was $75 dollars, but we kept walking and found the discount canvas section just beyond the fancy ones.

L’s first throw wasn’t hard enough, and the egg ricocheted off without breaking, so this might not be ideal for younger kids or kids who will have trouble throwing with some force (L is almost six and has quite the cannon, for a t-ball player). Luckily, if the egg doesn’t break, you can just pick it up and try again. We were even able to refill and rethrow a couple shells that made good contact but stayed mostly intact. Just be sure your kids know to pick up the shells with the open side up!D67A01F3-99E7-4EFF-A183-69B7CCCA0821.jpeg

This was SO fun. Our masterpiece is currently drying and is going to hang in a place of honor in our basement. I kind of wish I had prepared a few more eggs just so Z and I could have thrown a few more ourselves (we ended up doing around 5 each while L did the other half) but I’m honestly not sure how much more paint this canvas could hold!

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This morning L participated in the “Read, Right, & Run” marathon. Today’s race was just a 1.2-mile course — still a fairly formidable challenge for a kindergartener! — but it was the culmination of a months-long commitment to read 26 books, do 26 good deeds, and run a cumulative 26 miles.

It took us more than three months to complete the entire marathon. We read and read and read. We picked up litter at the park, put quarters in all the carts at ALDI, made cards for family members, delivered treats to neighbors, shared snacks and toys with G when she was sad. And L spent his weekend afternoons and even his recesses at school running, bit by bit, completing an entire marathon one half-lap at a time.

L learned — and sometimes struggled with — new and difficult concepts like pacing yourself, patience, and keeping going even when things are hard. Lord knows he’s done all these things before, without realizing it, but this was the first time he’d faced some of these concepts head-on, by choice, across weeks and months, and he rose to the challenge admirably.

On the way out, Z and I wanted to grab a coffee, so we took a different route out of the park — one that took us right by the hospital. As we paused at a stoplight, I looked up to see this shiny new hospital tower rising above us, and it took my breath away.

771DE070-734E-4930-88BD-8222D1A9972F.jpegYou see, for more than three years, L and Z and I watched this tower being built from the windows of the neighboring children’s hospital. We were admitted so many times I’ve lost count, and for a truck-loving toddler, there was no better entertainment during those endless inpatient hours than watching the crane swing slowly but surely around, watching the construction workers do their well-choreographed dance, watching a giant made of concrete and steel materialize before our eyes.

We watched that tower rise, bit by bit, layer by layer. At times it was a marker of my frustration; they had made so much progress, and here we were, back again, making so little.

They weren’t quite finished with it last time we were inpatient — now over two years ago, thanks to the incredible surgeons and GI team who work in that very building. And now, today, the tower stands complete, and my son has run a marathon.

“Mama,” I heard a little voice say from the back seat. “Mama! I wouldn’t have been able to do the marathon if I was in the hospital, would I?”

No, buddy, no you wouldn’t; but you wouldn’t have been able to do it without that hospital, either.

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DC & the DDNC

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A week and a half ago, I went to Washington, D.C., to participate in the Digestive Disease National Coalition’s Public Policy Forum. I had planned to follow up with a recap post right after, and I left the forum informed and energized and full of plans to take what I’d learned and done and keep those balls rolling forward.

And then I left the Senate building and ran for a train, then a bus, then a plane, then another plane, and got home at midnight, and nursed a baby at 3am, and went to work at 8am, and spent the next week trying to catch up, and now here we are….

Honestly, I probably would have shared something earlier, but as I think back on my whirlwind trip to D.C., it’s a little overwhelming just figuring out where to start. I spent all of Sunday afternoon hearing presentations from people who know an awful lot about obstacles to care that I have only barely scratched the surface on, or that I have experienced but didn’t really have the terminology to put in a broader context, and about other things that have to do with other diagnoses entirely but were eye-opening when it comes to important health issues that can impact all of us; and then I spent all of Monday having conversations and connecting dots and figuring out how to share our story in a way that matters and trying to sort out where my efforts go next; and I left wanting to share ALL the things all at once because it’s so important and people’s lives literally depend on it and WE can be the ones to make a difference!

But also, well, it’s a LOT to digest.

So I’m going to step back and hit pause on trying to regurgitate all the information I gobbled down and half-absorbed in a span of less than 36 hours. If I’ve learned anything over the last few years, I know that large quantities are easier to digest if they’re spaced out over time and appropriately chewed over….so I’ll give all that info some breathing room.  

What is useful right now, I think, is this: If you’re thinking about doing something like this, whether it involves traveling to D.C. or meeting with your lawmakers locally or even just picking up the phone for the first time, DO IT. Your story matters. Your voice can make a difference.

If you’re following along because you’ve considered participating in something similar, or you found this blog because it’s now January 2020 and you’re debating whether you should register for the DDNC Public Policy Forum and want to know more about what it’s all about, here’s how it went for me.

I got in to D.C. on Saturday evening, which turned out to be perfect timing for two reasons:

I had time on Saturday night to walk by the White House all lit up after dark, and – more importantly – to put this in my belly.


Yes, I did eat the entire thing. I regret nothing.

It also allowed me to spend all of Sunday morning doing a walking tour of the major monuments before the forum began. I mention this because it became an important part of my experience there: right before I participated in a concentrated effort to make our voices heard so that we might shape our nation for the better, I spent four hours immersing myself in monuments to people who gave literally everything to help shape our nation for the better, and to protect my right to make my voice heard. I’d never been to D.C. before, but even if I had, it was an incredibly poignant way to kick off the forum.

Sunday afternoon involved a series of presentations from physicians, patient access advocates, and industry representatives who spoke about things like current research and funding, obstacles to access like step therapy and non-medical switching, and the highlights of the DDNC’s legislative agenda (you can find more detail about their legislative agenda here).

I also met some other people who were there through the Oley Foundation, including a member of the Oley staff who was absolutely key in my attending the DDNC forum at all, as well as some parents who are among the very small group of people who can truly understand what we have been through with L. I was able to talk freely about our journey without stopping to explain anything, in a way that I have very rarely been able to do, and with people who don’t bat an eye at talking about some of the less pleasant facets of digestive disease – a whole group of people who think it’s perfectly acceptable to talk about vomit and poop while eating breakfast! My people.

And, on Sunday, I finally found out who I’d be meeting with on Monday.

This day was useful for helping me contextualize some of the obstacles we’ve run into and providing some language to use to help connect our experience with current policy issues, and it also provided an opportunity to connect with people and organizations that can provide resources for me as a caregiver and can help me continue and hopefully expand my advocacy efforts (for example: you can go here to share your story about obstacles you’ve faced regarding coverage for medical foods, like enteral formula).

On Monday, we reconvened for another brief overview of the highlights of the DDNC’s legislative agenda and got together with our teams to learn each other’s stories and talk strategy. My team was a pretty well-rounded group: me, an adult patient who relies on enteral feeds after a difficult battle with throat cancer, the president of the United Ostomy Associations of America, and a GI nurse whose job in part involves colorectal cancer screening. The DDNC tries to group people based on the state they live in so they can try to arrange meetings with the appropriate lawmakers, but there aren’t a lot of participants from the great state of Missouri, so our little group represented Maine and Delaware as well.

I was a little nervous leading up to Monday, partly because I didn’t know who we’d be meeting with until the day before, and mostly because I’d never done this before and didn’t know what to expect. But I felt much more equipped to steer these talks after the Sunday information sessions, and one of the members of our group had participated in similar forums many times (I think this is probably true of most of the groups there that day), so she led the way at first, and we had a really lovely conversation at the first office we visited. The aides we spoke with seemed genuinely moved by the stories we told, and after the first meeting my team kind of found a groove and the words flowed more and more easily as the day went on.

We met with a total of 8 offices – none of the actual Senators or Representatives, but with their aides and health care advisors, who on the whole seemed very engaged and well-informed about the issues we discussed. Our conversations were brief – anywhere from 10 to 25 minutes, which meant we needed to present our stories in a focused way that really got to the heart of the issues (I had practiced the night before, because, as you may have gathered, being concise is not my strong suit….). After the first couple of meetings, though, we had our elevator speeches down, and by the end of the day we were even talking about facets of each other’s stories, weaving a bigger narrative about the way these issues impact all of us.

One useful tidbit I’ll leave here is a piece of advice from another mom who’s had a lot more experience on the Hill than I have: Bring a simple handout you can leave with the legislator or aide. The DDNC provides a folder of information to leave behind, but it’s, again, a lot to digest, and it’s focused on the policies, not the patients. I brought with me a half-sheet handout with L’s picture, a very basic summary of his health journey, and a simple list naming specific legislation we’d like them to support, to help connect real people with the policies at hand. If you’d like to create something similar, mine looked like this:

Meet L

And of course, I can’t post this without including the mantra of the weekend: Wear comfortable shoes. You’ll be doing a LOT of walking.

I came away feeling, like I said above, informed and inspired and energized, and I’m looking forward to the promised follow-up from the DDNC with advice about how to keep these conversations going. I took along photos of L to share in our meetings, but I’m hoping to go back next year and actually take L with me – I want to keep being an advocate, and equally as important, I want L to see me being an advocate, and know that he has a voice too.

Maybe we’ll see you there?



A few days ago, a 10-year-old boy named Seven Bridges died by suicide after being bullied relentlessly for his colostomy bag and chronic bowel condition.

Tragedies involving kids are quick to bring tears these days, but this one just sucked the air right out of me. This could have been my son.

L only had his ileostomy for three and a half months. We were lucky that his surgeon was able to reconnect his gut so quickly. He still carries the scar, but he doesn’t remember the stoma. But we know all too well that nothing is certain on this GI roller coaster, and if his remaining bowel perforates, if his current partial blockage turns into the real deal, if he loses more bowel – we could be right back there.

In the wake of this week’s tragedy, people with ostomies posted a flood of pictures showing their bags — usually carefully hidden away — to spread a message of love, support, and body acceptance. I looked back through L’s NICU pictures, planning to join in, and realized that I don’t have a single clear photo of his ostomy bag. I took a picture of the exposed stoma on his belly during a bag change so he could later understand where his scar came from, but for all the time I spent agonizing over keeping his bag attached and leak-free, I have no visual record of it aside from the occasional bag photo bomb like the ones below, where you can just barely see the tip of it sticking out between his empty hand and the rattle in the picture on the right, or can see a tiny corner of the wafer sneaking into the shot at the bottom of the picture on the left.

I hated his ostomy bag. It leaked. It would never stay attached. It trapped gastric juices and ate away the skin around his stoma. An ostomy can be a real pain in the belly. But an ostomy is anything but shameful. L’s ileostomy saved his life.

An ostomy is hope. An ostomy is a badge of courage. An ostomy means you are a survivor. In a world of NOT KNOWING, that vibrant pink stoma is the best visual reassurance you will ever have that your remaining bowel is functional and thriving. An ostomy means your story is not over yet.

If you hear your kids mention a classmate who is “weird” or “gross,” don’t brush them off. Ask questions. Teach kindness. Normalize illness, disability, and difference. Spread love.


To my daughter, on the anniversary of the Women’s March

January 20, 2018

Dear G,

Today you marched.

You don’t know you marched. You slept, mostly, snuggled against my chest, oblivious to the noise of the crowds around you. Your father and your brother marched alongside us. He will remember, I think – your brother. He might tell you about it, later; about the people, the sign he carried proudly, the train you got to ride, the moment when I stopped him in the street, in the middle of all the people, to talk to him fiercely about love, and differences, and doctors, and about speaking up when you see something you think is wrong.

But you will not remember. And so I’m writing to you, that you might one day carry with you what’s in my heart tonight.

Your spark came into being three weeks after last year’s inauguration. As that historic shift swept our nation, I was filled with doubt. Your father and I had been thinking about you for quite some time, but I had been afraid – afraid a second child might be too much to handle alongside your brother’s medical needs; afraid we might multiply those needs; and now, just when we were feeling confident, afraid of bringing a child into a world and a future that suddenly seemed like it might come crashing down.

I was bolstered by the Women’s March, by the momentum I felt that day and in the calls to action in my community in the weeks and months after. And I came to realize that my very ability to suddenly feel fearful now, where I had not before, was itself a sign of privilege, and not one to take lightly. I vowed to do better, to do everything I could to make this world a better place for my children, and to raise them to keep carrying that torch.

But then, in April, in a year in which every day the news brought something a little worse than the day before, I found out you would be born a girl – and I was again afraid. I was afraid of what the future would hold for you; worried that I was not qualified, not strong enough, to raise the kind of woman I would want you to be. And as I recognized that fear in myself, I was ashamed. How could I raise a strong woman – be a strong woman – without first believing in my own strength, and in yours?

So this is my promise to you:

I will take you to marches.

I will teach you that you have a voice. I will show you that your voice is powerful, and that you have both a right and an obligation to speak out against injustice and suffering.

I will teach you to listen. I will show you that, while your voice is powerful, sometimes the most powerful thing you can do is truly listen to those whose experiences differ from yours; that you should apologize if you find yourself in the wrong; and that the only way to bring about real change is to make sure every voice is heard.

I will teach you to do. I will impress upon you that the commitment you make by marching means nothing if it’s not lived out in the words you speak, the calls you make, the relationships you forge, and the hours you give.

I will teach you to love. I will show you that love can span vast differences. And I will encourage you to love other women fiercely. I will teach you that we are strongest when we build each other up, and help you to recognize you are worthy of others’ love, and they of yours.

Sleep well, dear daughter, for there is a long journey yet ahead; but take heart. I will take you to marches. I will show you that your love and light can shine through any darkness. And I will never once doubt that you can be the spark that will light the world ablaze.



A mother’s oeuvre

I have written

One hundred thousand poems

In my head

While my arms were full of sleeping child

And lost them again, before my hands could hold a pen.

Perhaps they’re out there still

Singing in the ether

Whispering the simple poetry

Of the soft round lines of your face

Pressed against my breast

As you dream.


Lost: Two Teeth

1AB790AA-4707-4BB4-AC42-F0FC633AC63CL has been working on a pair of wiggly teeth for months. They’ve been getting looser and looser, but they’d been hanging in for so long that I was starting to wonder if they’d ever actually come out — so when we sat down to lunch after a morning of adventures in the Science Center, I was shocked to see a gaping hole where his bottom right front tooth used to be.

“But I didn’t chomp anything crunchy, Mama!” he said, after shrieking with joy and surprise at the discovery of this new milestone.

I’m not totally convinced he doesn’t have a tooth working its way through his belly as we speak, but he was certain he didn’t swallow it, and more than a little concerned that the Tooth Fairy wouldn’t come visit him if he didn’t actually have a tooth to offer. So we made our way to the front desk of the Science Center, explained the situation to an incredibly nice member of their staff, and left my name and phone number on a pink post-it with “Lost tooth” noted in big letters.

I’m hoping she picked up on my “we don’t actually want this back” vibe. I will be incredibly creeped out if they call and say they found it, and can we come pick it up please.

In any case, L was consoled by this and made sure to write a letter to the Tooth Fairy to let her know that if she wanted to find his very first lost tooth, she’d have to visit the Science Center instead of his bedroom. And then he proceeded to lose another tooth that was threatening to topple over without the support of its neighbor – with a little help from Z this time.

In the morning, L was delighted and surprised to find this note outside his door attached to a mini Lego set, along with a couple bucks in the pocket of his Tooth Fairy pillow:


You might want to check your security cameras, Science Center. I think you may have had an after-hours visitor!

Breast pumps suck. Getting your insurance to pay for one doesn’t have to.

DEF5382C-2FB8-4F7F-A285-D877861FD322.jpegUnder the Affordable Care Act, health plans are required to cover breastfeeding support & supplies. But when I was pregnant with L, I was a little unclear on the process required to get a breast pump covered by insurance. So I called the number on my insurance card to find out what I should do; I got a prescription from my OB/GYN and then called the insurance company again when the information I was receiving elsewhere didn’t seem to align with what the insurance rep had told me; I talked to a pharmacist and whoever answered the phone at some sort of home health supply store, with more conflicting results; I called my insurance company two more times to confirm that I was doing it correctly; and I called yet again after I submitted my reimbursement request to confirm that I had done it correctly.  

And then I got a denial letter in the mail.

When I called our insurance company to object to this denial, they conveniently had no record of any of my calls. So I ate the cost of that $300 breast pump, because by that time L had been born and I was up to my ears in other, more pressing worries. When a nurse at my OB’s office found out what had happened, she connected me with someone in her office who submitted the paperwork for me to get a second pump free through insurance, so they would at least have to cover one for me even though I had paid out of pocket for the first, and I did receive a pump free of charge that I was able to keep on hand as a backup — but I had no choice in the type of pump, and received an model which shall remain unnamed that I like to call the “Purely Sucks,” which I used for exactly one day out of desperation when I had left my preferred pump somewhere and hadn’t been able to retrieve it yet, but which I’m pretty sure would have led to a failed attempt at exclusively pumping had I had to use the insurance-provided pump from the start.

So when I began looking into obtaining a new breast pump during my second pregnancy, I was determined. I was all set to arm myself with information and spend weeks fighting my insurance company to the death to get the proper coverage for the pump I needed. They would not win this round!

And then I discovered the Target Breast Pump Program, and within minutes, my pump request was in the works and I could save my resolve for the next insurance battle that was sure to come my way.

When I called, I spent maybe 10 minutes on hold and another 2 minutes speaking with a representative who took my information and got things rolling. Afterward, I faxed them the prescription my OB had provided, and a few days later, I received an email outlining my options, with images of the pumps and links to product pages to help me decide. I replied with my selection, and my pump was ready for store pickup two days later. Easy peasy nipple squeezy.   

Don’t pay for your pump out of pocket. Don’t waste time getting the runaround from your insurance company. Have Target do it for you!  Click here for more information about the program.

Disclaimer: All opinions are my own, and I have not been reimbursed for this post –  I just take great satisfaction in making health insurance companies pay up and pay out!

The Enormity of Normalcy

About a month after L came home from the NICU, I took him to the grocery store for the first time. I was still very anxious about taking him anywhere in public, given our heightened awareness of germs coupled with his tendency to make alarmingly large messes of one type of bodily fluid or another, but we needed groceries, and I needed to feel like a competent mother who could at least handle taking her child to the grocery store, for pete’s sake. So I packed up all our many supplies, and timed it just right, and loaded us up in the car and set off.

I had heard friends talk about random strangers approaching them in public places to fawn over their baby and pinch chubby cheeks, so I braced myself for the onslaught as I walked through the doors with my adorable little granny-magnet. I was fully prepared to slap an old lady’s hands if she got too close; it was flu season, after all, and that sweet old lady’s germs could be devastating for L.

But nothing happened.

When we walked through the doors, no one noticed. As I pushed our cart through the produce section, not a single shopper looked our way. L wasn’t hooked up to his TPN backpack and he wasn’t currently spewing any fluids from either end, so we had no reason to draw curiousity or disgust or alarm, and he was approaching six months old — not tiny enough, anymore, to be irresistible. He looked like any other baby in the supermarket with his mom, strolling down the banana aisle on the way to the salad greens.

I found a strange urge to scream unexpectedly welling up inside me. I wanted to throw my head back and yell, “DON’T YOU KNOW HOW HARD THIS WAS?”

Not just physically getting to the store, although that had been hard enough. I had timed it during that precious 6-hour window of freedom he had off of TPN each day, and in between naps and pumping and doctor’s appointments and therapies and feeding sessions that could take up to an hour apiece, just to get him to finish off two teaspoons of breastmilk. I had loaded up diapers and wipes and spare clothes and medical tape and saline syringes and sterile gloves and a g-tube extension and a spare dressing change kit, trying to prepare for whatever hurdles might come our way. I had mustered the courage to take him out in public in November, and to brave the many things that could go wrong outside of the safety of our house.

But beyond that — nearly six months of constant struggle had led up to that simple trip to the store. The yell I stifled was made up of countless sleepless nights, countless hours wondering if we would ever find normalcy again, countless days when I’d had to buy my groceries solo, because my child was not allowed to leave the hospital. It was made up of six months of fear, six months of learning to cope, six months that had dropped me into a life I barely recognized.

That simple act of normalcy – pushing my baby in a cart through the produce section – was so utterly jarring, on the heels of our struggle, that I felt like I didn’t belong, like we must stick out like a sore thumb, and I couldn’t quite wrap my head around the fact that no one had noticed us.

It’s been one year since we became a family of four. I’ve barely blogged since G was born. Partly, that’s because our lives and hands have been so full; where I used to sneak time to write after L was asleep, I’m now doing back-to-back bedtimes for two and often falling asleep before the end of the second one, because I’m exhausted from middle-of-the-night escapades; where I used to sneak time to write over my lunch break, I’m now pumping and pumping and pumping some more.

But a big part of my long mostly-silence comes from the fact that things have been so gosh darn normal that I’m not sure what to say. And it’s not that there’s nothing to write about — it’s just that it’s difficult to explain, in a quick blog post about how everyone is doing well, the enormity of that normalcy for us, when for a long time we didn’t know if we would ever get here.

We are happy. We are well. And I am still awed and stunned, every single day, by the enormity of our normalcy, in a way that I’m not sure I quite have the words to describe.