L goes back to the ballpark

When my post about the Cardinals usher helping us find milk went viral, the Cardinals and the local news and various other people tried to contact the usher, but no one could get in touch with him in time to include him in the coverage that was popping up right and left. I was bummed that it seemed we had missed the opportunity to properly recognize him despite all the coverage, and I was also worried he didn’t want the attentionimage I had inadvertently brought him.

This past Saturday the Cardinals brought us back to the ballpark for an interview, and we were finally able to reconnect with the kind soul at the heart of my little story. It turns out he had been out of town and off the grid for the weekend, and had no idea he had become so famous until he saw the abnormally large number of notifications on his phone when he returned!

The usher – his name is Scott – was there in section 267 to meet us, with a goody bag for L stocked with a baseball, a Fredbird pennant, a Cardinals Build-A-Bear and plush Clydesdale, stickers, and a shirt to grow into – and, of course, a bottle imageof milk (although rest assured, world, we came fully prepared this time and will probably never go anywhere without milk ever again!).

Scott and his wife proved to be just about the nicest people I’ve ever met, and we were thrilled to be able to thank them in person and offer an actual thank you card complete with original fire truck illustration by L (because a fire truck expresses the very highest form of gratitude, obviously).

We did spend most of the game walking up and down all the stairs and ramps in the stadium searching for Fredbird (whom we found not one, not two, but three times, because once just wasn’t enough), but we also managed to see all the runs that wimageere scored and actually stayed for the entire game (innings 8 and 9 brought to you by Disney Toys Review on YouTube. I have no regrets).

Big thanks to Scott and to the Cardinals, and even more so because this outing couldn’t have come at a better time. We have taken it upon ourselves to have Epic Weekends leading up to L’s big surgery next week; Saturday was baseball and a birthday party, and Sunday centered around football, the fire truck playground, and filling the bathroom sink with shaving cream (L’s request). On the docket for next week: breakfast at The Restaurant with the Car Playground, a trip to the pumpkin patch, and, most fun of all, a bowel prep (who’s jealous?).

Stay tuned for our story in Cardinals Insider in a week or two!

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Today is our Coming-Home Day

Today L is 3 years and 131 days old.

I suppose this should be a Throwback Thursday post, but since the days of the week were not serendipitous, how about let’s call it “Feels Friday.”

imageOn September 30, 2013, after watching dozens of new mothers departing the hospital blissfully unaware (or so it seemed to me at the time) of exactly how lucky they were with their discharge papers and their babies who didn’t even need to be plugged in to the wall, Z and the NICU staff loaded me up in a wheelchair with my 4.5-month-old son and a bouquet of “It’s a boy!” balloons and made a small spectacle from the NICU to the hospital doors while passers-by looked on and wondered how on earth I managed to be in such good shape after pushing out that  ridiculously large and strangely alert newborn.

Three years ago today L came home at last, and we finally turned off the porch light that had been burning for 131 nights awaiting the day our entire family would finally be home.

Not to be outdone by himself, L decided to celebrate the one-year anniversary of his going home day by going home yet again. We had planned to find a fun place for a 1-year-and-131-day old boy to have a celebratory dinner, but instead we were wrapping up a nearly 2-week inpatient stay that began with an emergency blood transfusion, ran the gamut of stress, frustration, denial, and mama-rage, ended with a new line placement and TPN, and was capped off by an extra three days inpatient while we waited for the ****wads at our insurance company to get their act together so we could be discharged with services from a home health pharmacy.

Last year? I honestly don’t remember what we did last year. To a certain extent every happening and milestone are etched into my brain, but his first going-home day actually at home is not one of them, and given the circumstances of the year before I don’t think that’s necessarily a bad thing.

Tonight we are going to The Restaurant with the Car Playground at L’s request, and spending our after-bedtime hours working on another kind of “coming home” by cleaning and moving furniture into the main floor of our new home, where we have been living mostly in the basement for the last two months. It’s still a work in progress, but I think it’s safe to say that’s a pretty good way to describe most things in our lives.

And next year? Who knows. So many, many possibilities lie between now and then. For now, we are taking things one day at a time.

Happy Coming Home day, baby boy.


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It’s National Neonatal Nurses Day

When we were touring the hospital where we were planning to deliver L, they took us by the entrance to the NICU. I listened as they explained all the ways their NICU was amazing, and I gave it a cursory “isn’t it nice that’s here just in case” in my head without really believing we would ever pass through those doors. A few weeks later, that unit became our entire world – and the people within it truly became an extension of our family.

NICU nurses are amazing people. Sure, there are some bad eggs among them, and like any of us they have their off days. But by and large, they are superheros. They choose to spend their lives saving lives, day in and day out, sometimes minute by minute. They devote themselves to the tiniest little smidges of humanity, babies so small even their own parents may be afraid to touch them for fear they’ll break, and commit to making those tiny people grow into healthy, strong, resilient children with bright futures. They face the unimaginable and not only find the strength to keep going, but find the strength to be an immense support for families who need them.

NICU nurses are the kind of people who call to check on their patients on their days off. They are the kind of people who take the time to read a bedtime story to a sleeping 1-week-old preemie, because they know it’s important to the parents who had to leave the unit during a storm. They are the kind of people who understand the significance of being able to take your baby outside for the first time, and who don’t stop until they make a courtyard excursion happen – and turn it into a newborn photo shoot, to boot. They are the kind of people who help navigate the difficult emotional terrain of the first days after a traumatic birth or terrifying diagnosis, and do everything in their power to make sure that scared, overwhelmed, trauma-stricken parents are given the tools to transform into competent, confident care partners. And they are even the kind of truly heroic people who can get sprayed in the face with womb juices while assisting with a delivery and then spend 131 days with the owner of said womb and never once mention it.

I never wanted to meet our NICU nurses. I never imagined I would have to. But our primary nurses spent almost as much time with L in his first 4.5 months as I did. As mothers themselves, they knew perhaps better than we did exactly what we were missing out on, and what we needed in order to normalize our experience as much as possible. From teaching us how to care for our child, to fighting for our child as if he were their own, to fostering the confidence to spread our wings as parents, to celebrating so many of his firsts and triumphs right alongside us – they are our family, and they have been our saving grace many times over.

In an age when we have lost much of our “village” mentality, it was difficult to accept that we needed the help of so many others to care for our child. But I could not have made it through the last 3.5 years without the help of a very mighty village, of which our NICU nurses were the foundation. To our amazing primary nurses and many, many more – thank you. To so many people big and tiny, you make all the difference.


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A love letter to my 99

Yesterday I flew halfway across the country to attend a birthday party for a woman I’d never met.

This is the story of why, and of how 99 women I’d never seen in real life have been my salvation.

Many parents of children with rare diseases find refuge in disease-specific online communities. I’m in one of those, and it’s been a fantastic resource, for all the reasons detailed here. I seek out help when I need it, and I try to give back when I can. The people I’ve met there understand our journey better than anyone else possibly could, right down to the smallest details of our daily lives, and I have learned a tremendous amount from that community.

But – these communities can also come with some of the downsides detailed here. I am incredibly grateful for the support I’ve received and I’m not about to leave the group, but for me, in our earliest days and months with L, immersion in it could become overwhelming. While it’s filled with support and encouragement and empathy and problem-solving, a veritable hive mind of people who get it, it’s also by design a place where people turn when they are going through hell. It fills my Facebook feed with all the things that could go wrong, and plants seeds of worry about complications I would never have heard of otherwise. And so I went there with caution at first. If I had spent too much time there while we were just beginning to wrap our heads around what was happening, all of the worst outcomes and what-ifs for L that were already trying to shove their way into my head all at once would have lived too near the surface. I needed to dip my toes in gradually, and so that group didn’t become my main lifeline in the way it can be for some parents.

My online refuge is a group linked only by the common thread that we all happened to be pregnant at the same time. That group, made up of women from all walks of life and stretching around the globe – they have saved me, a million times over.

Nearly four years later, across multiple platforms and through discord and mayhem that occasionally threatened to dissolve us, 100 of us are still going strong. I talk to ninety-nine amazing women every single day. When L was born they were my safe space, where I could rant and rage and curse and cry – anonymously at first, and at first that safety came from the anonymity, in a space where I didn’t have to fabricate a happy ending or edit out an F-bomb in case my mom was reading (hi Carol!). But over time it evolved into enduring friendships with very real women across the country. They understand the hopes and fears and struggles that come with L’s diagnosis – not because they’ve experienced it in their own lives, but because they’ve been by my side every step of the way. They have been there with me in every hospital room, and at every appointment. They have rejoiced with me, and they have cried with me. They joined together to mail me a box of sunshine during some of our darkest days. When I felt like I was drowning, they were my life raft.

If I need an ear or a shoulder to cry on in the middle of the night, someone somewhere is awake. If I need a laugh, they do not disappoint. If I need to vent about my toddler toddlering, they really, really get it. There are a handful of other significant medical and developmental diagnoses in the group, and a myriad of ways in which facets of all of our experiences interweave and align beautifully.

More than anything, they have proven to me time and again that I am not alone. Through months and years in which I spent a great deal of time feeling like no one who didn’t have a short gut child could possibly understand what we were going through, my 99 have shown me that every single person in the world struggles; that every mother fears for her children, every mother hopes for the future, and every mother feels varying degrees of crazy sometimes. They have helped me learn that parenting is always hard, and always also filled with joy; and that if we set aside some of the details that make our paths different, the feelings and emotions at the heart of it all are the same – and because of that, no matter how different my path looks from theirs, I don’t have to walk it alone.

So when I flew 825 miles to spend a weekend with 30 women who may or may not recognize my face, it wasn’t absurdity – it was a homecoming. That birthday party was a family reunion.

I may be on a parenting journey that none of them have traveled, but they have proven to me that others can walk by my side, if I only let them. It’s not so very different from theirs, after all. And no matter what comes next, I know I am facing it 99-strong.


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To the usher at the Cardinals game who spent two innings finding my son a bottle of milk:

cardsfanThank you.

When I asked you if you knew where I could find milk for my son, at Busch Stadium on a sweltering summer evening, I expected you to tell me I was out of luck, or at best offer a vague suggestion.

Instead, you took us several sections over into the Redbird Club even though our tickets didn’t grant us access, because you knew it housed a bakery – but they were out of milk. Instead of giving up, you took us three levels down to a store on the main concourse, where we once again struck out – which you know, because you stayed and helped us look. So you led us halfway around the stadium to a donut stand, where we at last found what we were looking for. While I paid for it you grabbed us the straw my son was asking for, along with some napkins for good measure. And then you went back with us, halfway around the stadium and up three levels and back through the Redbird Club and over several sections, to make sure we didn’t get lost on our way back, because we’d had to travel so very far to find that bottle of milk. It took two innings, but you made sure my son was happy.

You did all this not knowing why that milk was important to us. You may have thought my son was spoiled, or that I was a pushover unwilling to say no to her three year old. If you thought that, you didn’t show it. You were wonderful.

What you didn’t know is that beneath my son’s Yadi t-shirt there’s a central line and a feeding tube. You didn’t know that the unusual form and function of his little body mean that he dehydrates easily, but also that drinking too much water could ultimately land us in the hospital, and for whatever reason, against most logic, right now milk is the thing he tolerates best.

You didn’t know that for the better part of the last three years it’s been incredibly hard for us to go places on a whim, or that in recent months we’ve vowed not to let his medical needs stop us from doing things, and so taking up our friends on these last-minute Cardinals tickets was a small triumph for us. You didn’t know that we might be facing another big surgery soon that could keep us mostly quarantined to our own house for weeks or months; or that I’d forgotten to grab his milk because I’d received an unexpected and lengthy phone call from his doctor as we were packing up our ballgame bag and had been distracted by talking through the laundry list of changes she wanted us to make in a last-ditch effort to avoid that surgery.

You didn’t know those things. You just saw a boy who wanted some milk, and you were kind to him. And I can’t thank you enough.

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Moving Day

13239178_683929029830_1187098196855334188_nThis weekend we officially moved into our new house, in which L’s favorite part is “the two doors and the room for my toys and running around,” and tomorrow we sign the papers to close on the sale of the first house we ever owned.

I am prone to attachment. I should be having many feels about this. I, who carried along to this new house a crystally rock that has sat in the garden at every home I have ever lived in. I, who as a child sat in the old truck sobbing when my dad was trading up. I, who kept every birthday card I ever received and still have every daily planner I ever wrote in.

I can’t get out of this house fast enough.

Partly I think I don’t have the emotional capacity for this departure to rip me apart. I most likely left that house for the last time yesterday, and I barely had time to think about that because I was trying to haul boxes and furniture while comforting a clingy barnacle child who didn’t feel great and also DOESN’T LIKE CHANGE and he wouldn’t nap and wouldn’t eat and wouldn’t be put down and he needed Daddy’s car not Mama’s car but Mama needs to drive it and our dog wasn’t in the right place and where are his trucks and let’s gooooo Mama.  

Besides all that, though….I still don’t feel the way I’m probably supposed to. I imagine lots of people have an extra hard time leaving their first house. It’s a milestone, and it’s filled with memories. But for us, well – when I look around those now-empty walls, this is what I see:

Over there is where I sat all day one sunny Thursday in May, in denial I was actually in labor but full of growing fear.

There is the door I walked through when I came home from the hospital with empty arms.

There is the nursery that stood empty for 131 nights.

Here are the rooms that were suddenly no longer quite my own, as I was forced to accept that I couldn’t care for my own child without a parade of home care providers – many of whom were a source of anxiety and frustration in and of themselves.

There is where I spent countless hours trying desperately to get him to eat a little more, and a little more, and a little more, and feeling with every passing minute that I was further failing him.

There is where I sat hiding my face from L so he wouldn’t see the tears I could no longer hold in.

There are the walls that closed in on us that first winter, when we could barely leave the house and couldn’t see an end in sight.

There, and there, and there, and there, and there, and — well, you get the idea. All of those places? They’ve been covered in vomit and poop more times than I can count (welcome home, new homebuyers!)

This house is filled with memories, but many of them are the kind that make it harder to move forward. And the memories it should be filled with, well, a lot of them happened elsewhere. L smiled at me for the first time in the NICU. He met his grandparents in a NICU room and met our dog for the first time in the hospital courtyard. He spent his first Halloween in unexpected surgery. His first bite of oatmeal was in a hospital room, and he took his first steps in a physical therapy session.

This house is full of love, but we’re taking that with us. It is where Z proposed to me, but I suppose I’ll take him with me too. What we’re leaving behind is an empty shell; the important things are coming along to a new shell we can make our own, on our terms.

Our new house is a fresh start for us. It signifies us taking control of our lives and getting on with things. I say that knowing full well that it may never be smooth sailing with L; we spent our first night in the new house scrubbing a mess off the carpet in his room in the wee hours of the morning. Parenting is always hard, and it’s always going to be extra hard for us, and there’s a decent chance we will be taking a big step back before long.

This house does not mean we’re leaving all that behind; it’s a reset. We are leaving behind the stretch of our lives in which things happened to us and we reeled and tried to recover but mostly spun along out of control and waited and waited for an all-clear that will never come, and we are forging ahead with eyes wide open, knowing that it’s time to stop waiting, and that we have become capable of adapting, and that whatever comes, we can get through it together.

Plus, you know, there are two doors that slide, and there’s room for one hundred fire trucks and running around.

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That one time when Z got out of bed in the middle of the night to pour L a bottle of pasta sauce: a tribute to medical dads

In anticipation of Fathers’ Day, I bring you a tale of fatherhood.

It was The Bad Summer. July or August of 2014 – I don’t remember now, and at the time I was in such a haze that I might not have been able to tell you. L was just over a year old and was line-free, so things were GREAT, RIGHT? RIGHT. EVERYTHING WAS FINE. L was line-free and things were good and I would not unclench the teeth through which I insisted everything was fine or release my death grip on my triple-strength coffee long enough to step back and take a good hard look at how quickly he was plummeting, let alone admit it to the world.

Our days were fine, more or less, if you put aside the frequent puke eruptions and the increasing resistance to eating and the rather alarming weight loss. Which I did, of course, because we were line-free! So things were fine.

Our nights, though – we hadn’t slept in weeks. L wouldn’t sleep unless one of us was holding him, and he wouldn’t allow us to hold him unless we were sitting up, so in between cleaning up middle-of-the-night vomit and poopsplosions (which were actually more like poopocalypses) and trying to calm his nighttime screaming, we tag-teamed sitting in the glider holding him while he slept. All night. Every night.

It was on one of those nights that I asked Z to bring me a bottle of milk. L was particularly inconsolable that night, and while we had to be cautious about the volume of his intake, drinking something often helped.

Now, Z is not exactly good at functioning on very little sleep. But, devoted father and husband that he is, he was putting up a valiant effort that summer. So after the third or fourth time that I yelled at him over the monitor in increasingly impatient sleep-deprived irritation asked patiently and politely if he would please grab a bottle of milk from the fridge, my words finally broke through his sleep fog and he dragged himself out of bed, sleep-walked down the stairs and into the kitchen, and brought me the bottle of the insta-baby-calm I had requested.

Only this time, something was off. Usually L would calm right down and drink his milk, but on that night, he started to suck for a split second then grew increasingly hysterical each time I tried to push the nipple back into his mouth.

Then – I smelled something. I sniffed again. It wasn’t poop – it was….oregano?!

Not many things made complete sense in the exhausted haze of that summer, but through the swirling vortex of never-ending middle-of-the-night I tried to sort out whether L had developed some new and alarming condition that was causing his toots to smell like basil. Herborrhoids, perhaps? Fennel Fissures? Dillverticulitis?

Then I felt something drip off the bottle onto my finger. So I did what any reasonable, self-respecting mother of a child who constantly poops everywhere would do in the middle of the night in the dark: I licked it.

It wasn’t milk.

It was marinara.  

Now, let me pause here to detail exactly what bringing me that bottle of pasta sauce entailed. It was not just sauce from a jar that Z had sleep-grabbed and poured instead of milk. No, the only pasta sauce we had in the house was some homemade marinara my mom had brought us. It was stored in a 2-quart square vat without a pour spout. So in order to bring me this bottle of sauce, Z had to pry off a large green square lid, heft a heavy square vat with both hands, and aim the sauce into a bottle with a mouth that’s maybe an inch and a half wide, tops. He then neatly screwed a nipple on top, replaced the green lid, put the vat of sauce back in the fridge, brought the bottle to me, and fell back into bed – then was thoroughly put out when I yelled for him to bring me a second bottle that was actually milk, because he had just brought me one, goshdarnit!

As you can imagine, we descended into quite a scene once daylight broke – sauce on the counters, sauce on the floors, sauce tracked up the stairs, sauce on the glider, sauce on our sheets. I believe Z still had sauce on his feet when he awoke. To this day, neither of us can fathom what possessed him to pour marinara instead of milk. And to this day, L will not eat pasta with red sauce.



There are an awful lot of patronizing stories out there about bumbling dads who try very hard but despite their best efforts just can’t figure out which end of the baby the diaper goes on. The stories we hear about dads, and even the very language we use to talk about parenting, all too often assumes well-intentioned incompetence.

This is not one of those stories. This is the story of a dad who is more capable than he ever ought to have to be; who for awhile could change a mean ostomy bag and who spends his evenings prIMG_0659epping a sterile field and assembling TPN, and who is the best at tossing L onto the bed upside down from much further away than he really ought to, and who also occasionally gets fed up and needs a break and wishes this would all go away and yes, sometimes, when he’s overworked and overstressed and overtired, pours marinara instead of milk.

None of these things are because he’s a dad – they’re because he’s a parent, and because he’s human.   

Here’s to all the medical dads out there who have been plunged into a role they never could have imagined, and have risen to the occasion with only occasional middle of the night marinara incidents; who often go unseen or unrecognized in a world that loves to focus on adorable babies and their mothers.To the dads who spend long hours at work while their hearts are at home or in the hospital; to the dads who often bear the brunt of their trauma silently, so their partners can have room to be weak; to the dads who have cried at diagnoses, who have learned skilled nursing alongside nursery rhymes, who have had their expectations for fatherhood shattered and have learned that nothing can shatter the bond between father and child; to Z – happy Fathers’ Day.


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Today L officially has to stop using the excuse “But I’m NOT THREE YET!” to get out of pooping on the potty.

BirthdayToday my baby turns three. Three!

As children grow, people like to talk incessantly about how they just can’t believe how fast time is passing. “Can you believe he’s already THREE?!!” Well, yes, I can, actually. 2013 felt like it lasted at least ten years, and 2014 felt like another five, so he should be graduating from high school soon, right?

This year his birthday is different, though. For the first time, he’s really not a baby anymore. He understands that it’s his birthday, and what that means, and he’s old enough to be excited about it and understand cake and candles and parties and presents and celebrating with friends. And all of that helps, immensely.

I’ve shared elsewhere that L’s first birthday was difficult for me. For us, the anniversary of his birth was not the same kind of celebration as it is for most people. We wanted to celebrate him, of course, but that celebration was differently shaded.

An onslaught of (very warranted!) cliches tends to surround a baby’s first birthday. “On this day one year ago my life changed forever!” the mother will say. “On this day one year ago I met my son and learned what love really is!” Or, “One year ago today was the best day of my life!”

The day Lucas was born changed our lives forever, there is no doubt about that. Oh, how our lives have changed! And in that first year I learned what it truly means to love someone in a way that I could not have understood before. But the day Lucas was born was the day we were completely and totally blindsided by a diagnosis we should have known months earlier but didn’t, a surprise diagnosis that will follow all of us for the rest of our lives. It was the day the world we thought we knew fell apart, and left us unsure if we could put it back together again. It was the day my body failed him. When I looked at my tiny helpless baby hooked up to tubes and wires and machines, I didn’t feel the instant miraculous overwhelming love that a mother is supposed to feel. I felt fear. And doubt. And anger. And guilt. I think I was in shock for quite awhile. The day he was born was the day I became a mother, but it was not the best day of my life; it was quite possibly the worst.

As Lucas’s first birthday approached, all of this was nearer the surface than it had been for some time. The first birthday is at least as much about the parents as it is about the child, and for us, his birthday was a strange, complicated thing to celebrate. It was jarring to throw a party in May for a birthday that should’ve been in July, and to rejoice on the anniversary of my first experience with real trauma.

Last year he kind of sort of knew something was happening, but we just had dinner with grandparents and baked a cake he wouldn’t touch, and tried to get him to tell us he was two amidst much toddler protest and an adamant single finger insisting he was still just one. It was low-key, and it was better.

This year, though – this year his birthday is all about him, as it should be. We started talking about it weeks ago, and he has been practicing holding up three fingers. We had a small party in the park, with family and friends, and I paused several times to marvel at the fact that he is a real human who can speak whole paragraphs and climb to the top of the tallest slide and play with friends and imagine things and obsess over fire trucks and Paw Patrol and Lightning McQueen. We ate pretzels and cheez-its and pizza, because he is old enough to have favorite things and those are at the top of the list. And he is old enough to have almost unbearable excitement about opening presents, but also old enough to begin to understand why we’re also giving toys to the children’s hospital, because giving is important too.

It wasn’t spotless. It was the first really hot day of the year, and I spent the afternoon with a mild but persistent dread that he would overheat and dehydrate and wind up back on fluids. He has had massive pukes each of the last two weekends because of (suspected) bacterial overgrowth in his gut, so when he told me his button hurts and his belly hurts I spent the rest of the day on high alert, with extra outfits at the ready (spare fire truck shirts, of course!). I let him eat a cookie (because he still won’t touch cake, even though he insisted on blowing out his candles half a dozen times), and spent the evening wondering if his loose poops were my fault because of the sugar. And I still have to suppress an awful lot of very real germaphobia to take him into a bathroom in a public park.

But, it’s better. It’s about him. It’s a celebration, and that’s all. Maybe this is another place I’ve gone numb, but it feels like some of that pain has just dropped away. I’ve gotten better at it.

Babyhood was hard for us. HARD. Every day that passes takes us further from the worst parts. Three is an incredibly fun age, and it’s also an age that can tell me when something hurts, and exactly where it hurts, and start to understand why we have to do unpleasant things that are necessary (even if he is already a master negotiator). Three gives me hope that even if things don’t get better, they can keep getting easier. And, three brings SO MUCH JOY at seeing a fire truck that, at least for that brief moment, nothing else matters.

Happy birthday, L. And thank you for making me a mother, and for showing me that I am both weaker and stronger than I had ever known.


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