DC & the DDNC

Follow @ThisGutsyLife on Twitter4DB7AFD2-3F92-4D18-82C5-58EBDB7DBE92

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.

4A580C80-96DA-42C7-B35E-0FC0C170E529

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?

D50DBAE4-9413-4B78-BC03-E496FE3E5DF7

Advertisements

Making the Patient Voice Heard

This week was Rare Disease Week, with Rare Disease Day observed on February 28. On Thursday, I shared a post from a couple years ago about what Rare Disease Day means to me: making the Patient Voice heard.

It just so happens that Rare Disease Day is observed (in non-leap years) on another day of significance to me: my birthday. I’ll be honest, now that I’m in my 30s, my birthday holds a lot less significance for me. I’m past the excitement of getting older, but not yet dreading the turn of another year; I’m solidly at the point in my life where I’m not really young and I’m not really old and my actual age matters so little that I occasionally have to do the math to confirm how old I really am.

This year, though — this year is a little different. I’m a person who invests weight in certain numbers (I once very nearly had a panic attack because Z was so careless as to park on the 5th floor of the parking garage on our way to a very commonplace minor procedure) and this year I’m turning 34 — one of my luckiest numbers of all.

Since Z turns 34 in the same year, I wanted to make this a “year of 34” for us — a year in which we take charge of our lives and start saying yes to things again after plugging along in survival mode for so long. That the launch date of my “year of 34” falls on Rare Disease Day turned out to be serendipitous, because it also coincides with this year’s Digestive Disease National Coalition Public Policy Forum — an event that brings together patients, clinicians, and others from the Digestive Disease community to learn more about healthcare policy and speak with lawmakers to advocate for better healthcare.

So today, as Rare Disease Week wraps up, I’m headed to Washington, D.C., to make the patient voice heard.

Stay tuned for more….

#BagsOutForSeven

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.

#BagsOutForSeven.

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.

52dcddc4-c05d-4ef5-a4c1-6f9072437fd3

 

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.

6bed4f0c-6d79-4aa8-a7e9-6ccaa58fc6b5

Closure

L was supposed to have surgery last week. We removed his g-button 16 months ago, but the site where it used to be is still seeping every so slightly, so his surgeon was going to close it up once and for all.

This procedure would have marked an even dozen for him, and this one would have been different in one very significant way: it would have been the first one that truly marked an ending. Every previous surgery — and beyond that, every appointment, every change in diet or supplementation, every tiny thing we’ve ever done to manage his care — has been permeated with “wait and see.” We have lived so much of L’s life in the NOT KNOWING; wait and see if his bowel survives; wait and see how much bowel he has left; wait and see if he can handle this reduction in TPN; wait and see if he can handle just a little bit bigger reduction; wait and see if this tapering surgery reduces his symptoms, if he tolerates these foods, if he absorbs these vitamins, if he can make progress; wait and see, wait and see, wait and see.  

The procedure we were supposed to have last week is called a “closure,” and I had even begun writing what I can only assume would have been a very poignant blog post about what a fitting name that is for the very first surgery we’ve had that did indeed bring with it some kind of closure. There would have been no “wait and see” — we’ve waited, and we’ve seen, and we know without a doubt that he no longer needs his g-tube. We know that there’s always a chance of a setback, always a chance of another surgery, always a chance he will need nutrition support again at some point, but for now, for this moment, this would have been an ending.

But that blog post was drafted in my head only, because even now I know better than to look directly at something that seems to be going so well. We may have moved to the far shores of the great sea of NOT KNOWING, but we still drink of its waters, and we know all too well that when it comes to L’s bowel, very few things are certain.

And so it happened that last Tuesday, L’s closure was cancelled. L had been having belly pain for a few weeks, and since we hadn’t had any imaging in just over two years, we had gone in the week prior for an ultrasound and upper GI (side note: upper GIs are a much easier process when you have a g-tube to push the barium drink through!); and then, when they didn’t like what they saw on the upper GI, went back for a lower GI to get a more full picture. So on our scheduled day of closure, instead of showing up at the outpatient surgery center first thing in the morning, we arrived in the afternoon for an appointment with the surgeon to discuss next steps

At the time of L’s last big surgery, his small bowel was very dilated and he had a stricture where small meets large – which means that section of his bowel had become so narrow he nearly had a full obstruction, preventing things from moving through his bowel correctly, backing up everything behind it and severely interfering with normal digestion. The surgeon opened up the stricture and tapered the dilated bowel, and these revisions helped tremendously. L flew through his recovery. He was off of TPN within six weeks and line free a few weeks after that. That surgery marked THE turning point in his progress; he has been light years better ever since.

But this latest round of imaging showed that the spot in his small bowel where the surgeon had opened up the stricture has re-narrowed, and the section of gut just before it has re-dilated. Not as significantly as it was two years ago, by any means, and he’s not having anywhere close to the same level of symptoms he was having in 2016. But enough to cause some concern, and to postpone his closure while we sort out what we should do.

And so we find ourselves back in the NOT KNOWING. It’s possible — and I want to pause to emphasize here that I don’t currently think this is the case — that his recent symptoms are the result of a new stricture that’s heading toward bowel obstruction and would require another big abdominal surgery to resect (remove) that portion of his small bowel. That would mean another potentially lengthy inpatient stay, another significant recovery period, possibly a brief return to some sort of nutrition support while we wait for his gut to wake up and return to full function.

It’s also possible that this stricture and re-dilation happened shortly after his last surgery, and has looked like this for most or all of the last two years, and we only just discovered it now because he had some belly pain and we happened to take a look. It’s very possible that the recent belly pain was caused, not by an impending bowel obstruction, but by a little bug that he took longer to shake than your average kid would. If that’s the case — and I think it’s likely, given the upswing L has had in the last couple of weeks — he would have had this stricture and dilation through ALL of his best days and months and years to date, virtually unphased by it.

We can’t know. There’s no retroactive belly-cam. We can only monitor where he goes from here. We’re not rushing into anything, at the very least, and we still feel really good about where we are. If he proceeds without any ongoing or worsening symptoms — and I want to emphasize, for anyone reading this who might be concerned, that he has been feeling loads better and has been eating ravenously (we’re currently at a pace of four full meals plus 8-10 snacks/day) — then we may never have to repeat that surgery, or at the very least it may be a long way down the road. 

For now, we’ll wait and see.

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:

4ED2714C-A5B8-4696-8732-42464543F84A.jpeg

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.

Happy Independence Day, fellow patriots

As the 4th of July approaches, I’ve been struggling with how to celebrate what used to be one of my favorite holidays. Growing up, it was a grand day of celebration. Each year my extended family descended upon my grandparents’ house decked out in red, white, and blue and armed with an entire arsenal of “Screaming Mimi’s,” “Bob’s flaming balls,” and our all-time favorite, the “Baby Boomer”; we would then proceed to eat our way through an all-day picnic while seeing exactly how large of an item we could launch sky-high using bottle rockets and waiting for it to get dark enough to begin our very own amateur fireworks display (what could go wrong?).

This year, though, I haven’t been feeling particularly patriotic. Honestly, given the current state of our nation, the thought of donning stars and stripes has been making me feel a little ill.

As I thought more and more dejectedly about boycotting the holiday altogether, however, it occurred to me that my disgust with our nation is patriotism. This holiday has always been about celebrating the promise of our nation in spite of the atrocities that litter our short history. We have never been a perfect union. But to turn away in defeat in the face of injustice is no better than turning a blind eye to it. To put our freedoms in action – be able to recognize our nation’s failures, to speak out against atrocities and injustices and work to correct them, to value the foundational principles of our democracy above the reprehensible actions of our leaders and work to make those principles a reality for all Americans – to me, that is true American patriotism.

And so this 4th of July I will be a patriot.

I will put on my red, white, and blue and write letters to my Congresspeople. I will donate $17.76 to organizations that advocate for voters’ rights, civil liberties, and access to healthcare. I will reach out to friends who are first and second and third generation immigrants to let them know I’m glad they’re part of our community. At storytime, we will read Independent Dames: What You Never Knew About the Women and Girls of the American Revolution; Of Thee I Sing: A Letter to My Daughters; Apple Pie 4th of July; We Came to America; Grandfather’s Journey; A Different Pond; Islandborn; and A Piece of Home. I will not let the horrifying actions of the powerful few drown out the hope upon which this nation has been built.  

These things are tiny, tiny drops in a vast sea of need. But enough drops can begin to shift the tide. 

Happy Independence Day, fellow patriots. Who’s with me?

Follow @ThisGutsyLife on Twitter

D6779657-D1D0-4C26-ADA0-FCFFE30702CE