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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Two weeks ago I went to see The Last Jedi.

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

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

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

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

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

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

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

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

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

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

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

You’re worth it.

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Each non-Leap Year, Rare Disease Day is observed on February 28. I say it’s observed on February 28 rather than it is on February 28, because RDD is actually February 29. Like Leap Year babies, RDD chooses February 28 as its backup day of observance in all years that cannot be evenly divided by 4 (and also in years that can be divided by both 4 and 100, but not also 400 – have you ever read the actual rules for Leap Day?!).

It’s fitting that February 29 should serve as Rare Disease Day; it is, after all, a rare day. Perhaps even more fitting is its absence, its silence, in three out of every four years. Most years, for most people, February 28 slides on into March 1 as though February 29 were never even a thing. Unless you are one of the rare people born on Leap Day (at around 4 million worldwide, they are a group only 1% the size of the rare disease population), you probably don’t give a second thought to that non-second of time at midnight in which February 29 doesn’t really exist.

Rare diseases often exist in silence, too. They live in the absences: the friend who stops coming to gatherings because the exhaustion from a late night might incapacitate her for days; the coworker who stops coming to the office because the pain is too much; the mother who doesn’t explain why her child is still in the hospital because she doesn’t know where to begin.

Unless you have been directly affected by one of them, it’s likely you’ve never heard of most or all of the nearly 7,000 rare diseases recognized by NORD. I had certainly never heard of gastroschisis or short bowel syndrome until they were quite literally thrust into my lap four years ago. But if you know even a handful of people, odds are high you know someone who has been affected by rare disease. By definition, each rare disease affects fewer than 200,000 people in the United States at any one time, but collectively there are more than 30 million people living with rare disease in the U.S. – that’s about 1 in 10 – and an estimated 350 million people worldwide.

This year’s RDD theme is research, and research is certainly a fundamental necessity for the rare disease community. Fewer than 5% of rare diseases currently have a treatment, and lack of knowledge and quality information can result in devastating delays in diagnosis. Many people remain undiagnosed, sometimes for entire lifetimes. And the need for treatments and cures is pressing; rare diseases are responsible for 35% of deaths in the first year of life, and 30% of children with rare diseases will not live to see their fifth birthday.

Last year’s theme, however, will always resonate most deeply with me: Patient Voice. On a true Leap Day in 2016, RDD made those 350 million voices heard. Research is brought about by advocacy and awareness, and advocacy and awareness begins with voices. The patient voice is the best advocate in a world where even most doctors don’t understand rare diseases, and it is the best avenue for placing faces next to scary, unpronounceable words. It’s voices that fill the absence; voices that inspire more voices; voices that make sure someday, somewhere, a mother will never feel as completely and utterly lost and alone as I felt in 2013.

To hear more voices or to learn more about rare disease, visit rarediseaseday.org or Rare Disease on The Mighty.

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