Writing A Letter, And Other Odds And Ends

I disappeared from the blog this week to take care of sick kids. Poor M has had her first serious illness–well, really it was a combination of three minor illnesses that sent her into a spiral. She had hand, foot, and mouth disease, which is so common among 18-month-olds, on top of an upper respiratory viral infection and an ear infection. Her body just freaked out on Sunday morning, and she had a febrile seizure and turned blue before we could get her to the ER. Honestly, I’m still struggling with the febrile seizure–even though I’ve been assured that the seizures themselves aren’t life-threatening–and I can’t even write about all that happened yet.

But, M is feeling better, which always makes Mama feel better!

I’m also trying to get our ducks in a row for our move at the end of the month. Though we’ve moved plenty of times, this is our first move with children, and I dread it. I mostly hate taking the kids away from their school and their friends, and I know it will be a challenge to keep things relatively normal for them during the actual move. I try to remind myself how flexible kids are and that this will be a good thing for our family.

My writing project for this week is to compose a letter to J for his 4th birthday, which is in a month. How did this idea just now dawn on me? I think I’ll make it a tradition for the kids, but I really wish I had started it years ago. The upside to being the firstborn is that you get all the firsts and all the pictures. The downside: your parents learn as they go with you!

My letter idea is that it’s a way to reflect on how the kids have changed in a year, what they love at a specific age, and all the funny things they say and do. I’m behind on editing photos, I gave up on baby books (I guess I understand why my mom left my baby book incomplete), and I should have finished J’s scrapbook nearly three years ago. But, one thing I know I can do? I can write a letter.

The Preemie Lifestyle

There is a myth that when you bring your baby home you put the NICU journey behind you.It’s what we all want to believe when we’re struggling through the emotions of having a hospitalized baby. We keep focused on that beautiful day when we’ll peel out of the hospital parking lot for the very last time with the baby in tow. And it’s a good thing that we have a goal as we trudge in and out of days in the NICU.

But, the crashing of fantasy and reality can be brutal.

After a couple of months of struggling through sleepless nights, a punishing pumping/breastfeeding schedule, and what I call the Two-Month Screaming, I began to fall into a depression. We were under our winter quarantine, I felt isolated, and the days were long and taxing.

I’ll admit that I wondered to myself, “What have I done?”

Parenting is rarely what you imagine, envision, or daydream. It is both better and worse. But, when you start out with a baby in the NICU, you drain so much of your emotional reserves in those early days. I found that I had little left for the journey after the NICU.

I came to a realization when J was six months old and he was evaluated for therapy. A social worker had mentioned all the services available for preemies as we were leaving the NICU, but I had no idea the kind of delays J would have. He wasn’t even rolling over at six months old. In fact, he didn’t roll over until he was closer to 9 months old and had spent three months in physical therapy.

It began to dawn on me that leaving the NICU wasn’t the destination or the endpoint. Having a preemie was a lifestyle. It involved Synagis shots and physical therapy and teachers who specialized in developmental delays. I wiped down surfaces with the zeal of a woman who feared one illness might kill her baby. Our entire family was vaccinated. My career disappeared into the background indefinitely. Getting J healthy was my singular focus. I felt that I owed it to him to give him as good of a start as I could, especially because I had evicted him from my body at 26 weeks.

Once I had M early too, this way of life really did become normal. I talk regularly with other preemie parents. I blog about preemie issues. I strategize on ways to help M catch up with her peers. Not a day goes by that I don’t think about where we’ve been. Raising preemies is a lifestyle, at least while they’re small children and maybe forever. The jury is out on where this journey goes, but for now it is all-consuming.

For a long time, I lived from one developmental goal to the next. I always focused on where we were going. But, sometimes we just need to slow down and appreciate where we are.

These children are hilarious and bright and energetic and enthusiastic. And so resilient. They could be poster children for all that is possible.

Would I see them this way if I hadn’t witnessed their beginning? Holding your baby in the palm of your hand changes you. Watching your two-pound baby breathe all on her own challenges everything you’ve ever believed. I’ve written before about the magic of having preemies, and it is so true. For all the difficulties, some of our moments in the NICU could take your breath away with their beauty.

Victories are sweeter, because they are so hard-fought. Walking isn’t just putting a few wobbly steps together; it’s the pinnacle of an uphill climb that began at birth, it’s the achievement built upon months and months of therapy. So what if everything takes longer, if it all seems so challenging, if sometimes I am so exhausted at trying to be a great mother? They are worth it all.

I didn’t choose the Preemie Lifestyle; it chose me. And I wouldn’t trade it.

Mama Bear

One evening, about a month into J’s NICU stay, my cell phone rang, just as my husband and I were walking into our house. We had left the NICU about an hour earlier, and then we’d sat in rush-hour traffic. So, I was just hanging my purse on a chair when I heard my cell phone.

I saw that someone from the NICU was calling, and my stomach did a free fall. We rarely heard from the NICU; they called maybe four or five times over the 91 days J was hospitalized. I was generally able to repress the fear that when the phone rang it would be the NICU telling us something was wrong, but I still jumped every time I heard my phone ring. And now it really was the NICU on the phone.

When I answered, it was a nurse calling (oh heavens), and though blood was rushing to my head, I managed to hear her say that J was fine but that the cardiologist wanted to speak with us (oh heavens).

We had been told weeks earlier that J had a heart murmur but that it wasn’t the kind most preemies have and that heart surgery would be unlikely. That week a nurse had informed us that a pediatric cardiologist was scheduled to see J again, but the NICU rarely communicated any specifics about specialists—they probably weren’t always entirely sure when a specialist would make rounds.

So, on that evening, not only was I surprised to get a phone call from the NICU, I was completely unprepared for any news from a cardiologist. The cardiologist on the phone was not the kind, quiet man I had seen passing through the NICU. It was a woman I’d never met, and she had such a thick accent that I had a difficult time understanding her.

She told me that J had pulmonary stenosis, which meant that one of the arteries into his heart was too narrow. It was causing a pooling of blood in his heart, which accounted for his heart murmur.

And that is about all the information I got.

That’s it.

I had what felt like hundreds of questions hit me like sand in a dust storm. Would he need surgery? Would he live a normal life? Could he be active? Would this condition worsen?

I kept thinking that we’d weathered so many concerns for his health in the early days. He had proved to be so healthy for a baby born 14 weeks early. And now this.

When I began to ask some of my questions, the doctor cut me off. I was confused. Why would someone call and give me a diagnosis and then refuse to provide any information about it?

So, I asked if her written report would be available in J’s hospital records, so that I could read it for myself.

J’s medical records were a sore spot for my husband and me. Parents were not supposed to open the binder of medical records that sat openly on the table next to our baby’s bedside. Any Tom, Dick, or Harry from the hospital could pop by and open it up to see any number of private facts, but J’s own parents—and legal guardians—were supposed to ask permission and then wait for a doctor to watch us while we opened the binder, just in case we had questions. Some nurses were rude and vigilant in their enforcement, while others encouraged us to access the information in it at our whim, which completely confused us in our early NICU days. We were never formally told of the policy, only chastised when we failed to understand the Golden Rule: do not open the binder. When we realized the extent of the dysfunction over medical records, it became an undercurrent of irritation for my husband and me. I know that J’s medical records legally belong to me. I have access to them whenever and wherever I choose, but we walked a fine line. I felt that ruffling feathers at the NICU and having a knock-down drag-out over medical records was an unnecessary distraction from J’s medical care—unless it became a crucial fight. So, for the most part, my husband and I just waited until no one was watching, and then we opened the binder to check for the most mundane facts, like when J last pooped. “The Chart-checkers” is what we named ourselves.

Anyway, I knew the cardiologist would write a report, and since she was less than forthcoming, I thought I’d just go to the trouble of requesting permission from a NICU doctor to read the report.

But, what she said stopped me. Cold. Before I could say another word.

“I’ll write a report, but you won’t understand it,” the cardiologist said, with an unexpected harshness.

Not: you might not understand it. Not: it will be hard to understand. Nope, my incompetence, it seemed, was a sure thing

For a second, I thought maybe I had heard her wrong. My brain kept trying to process her response, and then when it finally did, my blood pressure shot off like a cannon. This time it wasn’t swirling blood in my head and a sinking stomach. I just felt fire. A raging fire inside my head.

First of all, I’m not stupid. I know I’m not perfect, but I’m darn sure about one thing: I am notstupid. I not only deserved information on my baby’s diagnosis, I needed information, because I would be the one taking him to follow-up cardiology appointments. It was my legal right to see the report, regardless of whether someone thought I’d understand it. And, um, I can read. At that point, I had almost earned my Ph.D., which would certainly qualify me to read. I was plenty capable of asking for clarification for something I didn’t understand, and, seeing as how I wasn’t supposed to read any medical records without supervision, I could ask the doctor or nurse standing over my shoulder for help.

I could feel myself coming unglued. All the emotions I had bottled. All of the frustration and sadness that I had shoved into the dark recesses of my brain. It was all escaping and wreaking havoc on what little shred of patience I had left for a pediatric cardiologist who had been practicing medicine just long enough to forget how powerful her words were.

I’ll admit that I’m pretty sure I screamed into the phone, “You don’t think I will understand it? I won’t understand! I can ask if I have a QUESTION!” And then I pulled the phone away from my face, as if I could look her in her emotionless eyes. I shoved the phone back against my ear and yelled, “I CANNOT talk to you. You’ll have to talk to my husband.”

She probably had no idea why I was so angry.

It was the best I could do. I had completely flipped my top, and I knew there was no going back. Maybe in person a look of kindness from her would have slowed my rage, but over the phone, I could see no sympathy, and all I could hear was her stunned silence. I knew that I was so offended and so hurt that if I kept speaking with her, I would just scream obscenities, which would do nothing to help J. So, I threw the phone at my husband, and I told him, through gritted teeth and plenty loud enough for the emotionally-removed pediatric cardiologist, “She won’t answer my questions, and she doesn’t think that I’ll understand.”

My husband, while furious on my behalf, was patient and deferential. He was able to extract a few more answers from her. Just a few.

The next day I opened the medical binder, in front of God and everybody, and I plunked myself down in the chair next to J’s bedside to read the report. I saw a nurse or two look askance at me, but this time I wasn’t sorry. I wasn’t going to wait a few hours for a doctor to find time to be present. One nurse passed by and kindly asked if she could help, which was, I’m sure, her pleasant way of reminding me that I was supposed to leave the binder closed. I explained that we wanted more information about my son’s diagnosis and that the doctor was less than forthcoming, so I was reading her written report. The nurse seemed to understand, and she left me alone without reprimanding me.

The report was simple. It listed J’s condition and explained that it had worsened over his short lifetime. It recommended a cardiologist see him again before he was discharged and that he be followed after he left the NICU. He was in no immediate danger, but it was cause for concern. I was relieved. Just seeing the explanation in black and white helped fill in the many gaps, and I had a better understanding of J’s condition and what questions I needed to ask his doctors and nurses.

And I understood the report perfectly. It seems that I do, in fact, know how to read.

We never spoke to that pediatric cardiologist again. From then on, we saw her partner, the kind, quiet man I had seen in the NICU. He didn’t say much, but he always smiled. And he always asked if I had any questions.

I think one of the hardest parts of having a sick child is being an advocate. It can be gut-wrenching, exhausting, and frustrating. But, looking back I’m not sorry for any of the times I was Mama Bear. Not one. I’m only sorry for the exact opposite, the times when I wasn’t Mama Bear enough. Which is another story for another day…

Waiting To Walk

It took J forever to walk.

By forever, I mean 17 months.

Actually, in retrospect, I thought it took J forever to walk, but now I have M to put his development into perspective. M always has this effect on me. She is nothing like J, and her story is nothing like J’s. She is exuberance to his reserve. She is fearless to his caution. She is defiant to his obedience. She had 3.5 more weeks in the womb than he did, which any preemie parent knows is just about a lifetime. She also had two rounds of steroid shots to develop her lungs just before birth; J did not.

M is almost 16 months old. By adjusted age, she is nearly at the point when J was hanging onto his walking wings for dear life, taking his first steps of hard-fought independence. Despite all their differences and her perceived advantages, it appears that she will walk no earlier than he did.

If J changed everything in my life, turned it all upside down and inside out, then how could M be such a surprise? She has shown me that even when you think you’ve made sense of the world, you probably are still just a sweet, little babe in the woods, naïve about your own naivety. So much of my frustration with J was misplaced because I compared him to unfair goals and children who weren’t born prematurely. Now, I realize that every goal he met, every step of forward progress he made, was nothing short of miraculous.

Not to take anything away from M, because she has overcome odds too, but it was J who was thrown to the wolves at 26 weeks with so many challenges. In his caution and reserve, sometimes we miss the magic of his accomplishments. They aren’t done in explosive fits or with gleeful giggles, like with M, and so sometimes we look up one day and find that tiny changes have compounded into J becoming a totally different child.

Now, as I await the tentative first steps of another late walker, I also realize something else. The early years of raising premature babies are different from the norm; in fact, they are vastly different. And even though the kids are all different too, there are some commonalities that preemies share that we cannot escape.

It doesn’t seem to matter that M’s personality is nothing like J’s, or that she’s a girl and he’s a boy. It doesn’t seem to matter that she crawls and he didn’t, or that she had 25 more days of development in utero. Here we are at 16 months with a baby who isn’t yet walking. And in my world, that is perfectly normal.

A Spring Cleaning

I love my kids with my whole heart, and I refuse to go very far for very long without them. But, by the looks of this blog and the rings under my eyes and the scowls I’m giving just about everyone, it is time for Mama to take a vacation.

This weekend I’ll get to visit with my childhood best friend, the one who has known me since the first day of kindergarten. The one with whom I have a shorthand sort of language. (“How is Lucius?” “You mean, Luke Duke Lucius?” Giggles.) We throw out names, places, and events rapid-fire. Our husbands long ago realized the best way to deal with our conversations during the few times a year we see each other is to remove themselves, because they can’t keep up. And they don’t want to.

I am so appreciative of getting this time away. To go be Just Summer. Not the mama, or the housecleaner, or the errand-runner, or the therapy-overseer, or the nap-enforcer, or the dinner-cooker. I am so excited for a breath of fresh air.

Like my house, I need a really good spring cleaning.

Not Enough Hours

The other day I was dropping the kids off at school. They are both at school for about seven hours a week, in a good week. Seven hours sounds like a long time, doesn’t it? Theoretically, I should be able to cram so much stuff into those seven hours, but by the time I spend a couple of hours driving back and forth to school (it’s 30 minutes one way) and I run errands and I observe the kids through the booths with one-way mirrors that seven hours is gone in the blink of an eye. One or both kids have been sick for the last several weeks, and anyone who has had little kids knows what it’s like when they’re not sleeping well and they’re extra fussy. And we’ve been trying to the get house ready to put it on the market, which is a Herculean task with two little ones underfoot.

As I was leaving the kids at school, I had yet another person ask me what I do when the kids are both in school. It wasn’t meant in an ugly way, but the emphasis on “do” betrayed a bias. “What do you do?” As in, since you already have so much free time, as a stay-at-home mom, what could you possibly have to do in that huge amount of free time you get when the kids are in school?

Is it not enough that I never get enough sleep, that I’ve tossed aside my career, that I have very little free time, that I feel like there is never enough of me to go around? Is it not enough that at the end of very long days I wonder where I’ll find the strength to get up and do it all again?

I don’t mean this as a complaint, because I chose to have these kids. I looked at my options when they were tiny, and I chose to stay at home with them. I am the CEO of their therapy, their schooling, and their development, and I understand that with the luxuries that brings so also comes the stress of being squawked and screamed at by a very frustrated toddler who can’t talk or walk yet. And I understand that along with all the extra hugs and kisses I get, I also have to wipe a lot of poopy bottoms and runny noses. Nothing in life is free, nothing is perfect, and every choice has upsides and downsides.

I just wish I didn’t have to justify my exhaustion. I have two little kids who demand nearly every second of every day. Sometimes, my nerves are so raw at the end of the day that I can’t even talk when my husband walks through the door. I just point him in the direction of the nearest fire to put out. What I do everyday is the most emotionally and physically draining job I’ve ever had. Because it never ends. There is always more to do. More chores, more parenting, more and more. Because if I catch up on all the things I must do, there is always a long list of things I want to do: organize my photos, finish the kids’ scrapbooks, write, take the kids to the zoo, etc. And there is no day off. Everyday, I wake up to the same challenges I faced the day before.

So, all I ask is that people don’t ask me what I do with the snippets of free time I get. Seriously. Do Not Ask. Because the implication is that I already have such an easy job that I couldn’t possibly need a few moments to myself.

My husband, who is always incensed on my behalf at these sorts of comments, advised that I come up with a pat answer when people ask me what I do. I’m usually so caught off guard at the question that seems so loaded and so misguided that I often smile and make some sort of joke. “You need to tell them the truth,” he told me. “You have more things to do each day than there are hours in the day.” (I love my husband.)

So, that is my new answer. To the whole world, what do I do?

“I have more things to do than I have hours in the day in which to do them.”

How To Love, And How To Hate

Hatefulness. It’s what’s on my mind today. Not the plain mean hatefulness but the stupid kind. The kind that causes people to do and say awful things, when they should know better but they don’t.

Some days I am so worn down. The job of caring for–or corralling, depending on the day–two little kids is so physically and mentally and emotionally exhausting that there just isn’t much of me left over. In this exhaustion, I find that I care less about silly matters that might once have worried me. Generally, I believe this whole having-two-tiny-babies thing has made me more relaxed and more sympathetic, a much kinder person.

With one major exception. I just have zero tolerance for ugly human behavior. Bigotry, judgment of others, and hatefulness just wear me out. I don’t have time to waste on anything, especially negativity, and I don’t have any space in my life for ugliness. Two recent events come to mind, but they’re really off topic for my preemie blog. So, I’ll just say this: We are all in this world together. We’re stuck with each other. And we can either be kind to each other and lift one another up, or we can choose to be miserable and make all those around us miserable too. Today, I choose kindness. Tomorrow, I plan on choosing kindness, and I hope that you’ll choose kindness too.

And one more thing: Our babies are watching us. Always. And we are the ones who show them how to love and how to hate.

The Portrait of a NICU Father

Today has been a disappointing day for my husband, for professional reasons, and it brings to the surface something that I’ve had on my mind lately.

This blog is usually about me and my babies and our struggles. But, that’s a lie. It’s been unintentional, because my writing is from my perspective. But, to even give the illusion that this journey has been anything less than a partnership is to give the wrong impression. The idea that I am somehow a fighter with all my pumping and sleepless nights is wrong, because I was never in it alone. I wasn’t alone in the  hospital. I wasn’t alone during all those high-risk appointments. I wasn’t alone in the NICU. I was never alone, because my husband was always present, even when he wasn’t physically there. He was always supportive, always positive, and always encouraging. He was always my friend. Even when the stress of the situation tore at us, I never doubted his loyalty to our cause.

It makes me angry when the world treats him as anything less than a hero. Furious, really. Because they do not know him as I do.

He is the extraordinarily gifted athlete who never brags. He is the faithful employee who demands little praise. He is honest, except when he thinks he will hurt someone’s feelings. He is more than nice; he is kind. I use my husband as a marker for my own impressions of people because he likes nearly everyone, and if he dislikes someone, I know to steer clear.

My husband is the man who built an entire deck, fence, and pergola from scratch with only occasional help from his father and his father-in-law. He designed it, and he made it happen, while our son was in the NICU and during his first stressful months home. How did he find the time and where did he find the willpower? That is the man he is. If he starts something, he will finish it, and not only will the final product be functional but it will be beautiful too. Sometimes, it’s a shame his job requires so much of his mind and little of his handiwork, because he is gifted at much more than just finance.

My husband is so smart, but he will never tell you so. He is handsome, but he doesn’t see it. He is talented, but he’s always looking to improve himself. He is fiercely competitive and yet compassionate too.

But, the most amazing thing about him is that he is the sweetest father. His son worships him, and it’s by no accident. His daughter squeals when she sees him. They adore him, because kids are smarter than adults. They know a treasure when they see one.

How did my husband handle the burden of working in one place with babies in the hospital in another town? I won’t sugarcoat it because it was terrible. But, he managed the balancing act better than I could have ever imagined. During this last year, he performed incredibly at work, even with a toddler at home and a baby in the NICU. Do the people at his company even know that he succeeded beyond all expectations while his home life was in crisis? I expected so much out of him–too much, some might say–but he never buckled. He always kept moving forward, because that’s the kind of man he is. He doesn’t complain, and he doesn’t pat himself on the back; he just gets the job done.

I don’t know about other NICU fathers, but I am quite sure I’ve underrepresented his role here. And I am sorry. In sorting through my own emotions and struggling through some of the baggage the NICU left me, I failed to write about how I fell in love with my husband all over again. We don’t have many date nights, and sometimes we hardly have time to talk. I hope it won’t always be this way, but how can you not admire a man who will reach fearlessly into an isolette to change a tiny baby with his fingertips? Because here’s the truth: my husband was better at the NICU than I was. When I shuddered to touch the baby, when I faltered, when I could not find the strength to go on, who was there to encourage me? My husband. He was the one who never declined a chance to touch or hold his baby. He was all-in, from the very beginning. He taught me how to touch J during my first visit to the NICU. He taught me how to change those terrifyingly tiny diapers. He told me not to be afraid to love that baby. He was brave and tender, all at the same time.

During moments of crisis, how was I strong? Because I had the support of a lovely man.

How the world judges him, I can’t change. But, I hope he knows his value when he’s home with us.