New Beginnings

Sunrise

Maybe I needed a break from writing. Maybe I thought I had said all I needed to say. Maybe I was wrong.

I’ve noticed a tendency for people to assume that once your preemie comes home, all is well. They want that for us, for all to be well.

Before I had preemies, I hope I wasn’t that person, patting people encouragingly and saying it all happened for a reason. I probably was. I probably didn’t say exactly what I should have said, or anything at all. I wanted to smooth it all over for people because when I see a heart hurting, my heart aches too; it is painful to bear witness to a dark place in someone’s life. But, you can’t rush someone through grief, and you can’t make it all better.

I have been foul lately, not on the surface, not in my professional life. But, at home I’m grumpy. I stay up too late and grumble the next day. I act put upon and stressed with my kids, who are little kids and have every right to need me. I thought once we moved, things would seem brighter; once we finished the house, things would slow down. I finally acknowledged to myself last week that I am not through with mourning all the days with babies in the hospital, all the nights I came home without them, all the months I was alone. The loneliness nearly did me in, but I felt guilty admitting it because I was too busy slogging through the muck.

There are times in life when we are all muck-sloggers. I think muck-slogging is a universal truth and some of what it means to be human. You can’t really understand the light without its contrast, the dark.

I’ve been so busy, but I was not too busy to write. I felt that it was a luxury to spend an hour thinking about myself when there were so many important tasks that needed my attention. That was the excuse I told myself, a way for me to brush my hands together and call it a day and act like when I look at my children I see two healthy kids. My Preemie Parent friends, we have seen and heard and felt some horrendous things, and cherishing our blessings should not keep us from acknowledging that leaving a child behind in a hospital day in and day out will break you–not break your heart, but you.

I had someone accuse me of being negative on Facebook a few weeks ago; he was someone I’ve known most of my life. It wasn’t his accusation that bothered me, because I generally don’t think I’m a negative person. It was his expectation of me, that I am still the sunny girl of two decades ago. That girl died the night my son was born, while I was unconscious on an operating table. I woke up a woman and a mother, reborn in so many ways. I cannot be expected to be someone I’m not, the girl I once was.

Do you also feel this pressure, that people want you to finish the chapter, close the book, and forget those days, months, years happened?

We are all shaped by life. I really wouldn’t change much of the last five years, except that I would spare my babies all that pain. But, just because I wouldn’t rewrite history doesn’t mean that I don’t still carry baggage with me that I need to lay down somewhere because it is getting seriously heavy. Are your bags heavy too? Please tell me I’m not alone.

I asked my husband, “Are you over it? Everyone thinks we’re fine. Are we fine? Have you moved on?” He’s generally so even-keel, so steady. “No, I’m not over it,” he said. “I know this sounds terrible, but that pregnant woman this weekend? It was difficult seeing her, not because she’s pregnant, but because of what we can’t have.”

If it is taking you months and years to put it all back together, to find some peace, to remember who you once were and who you want to be, you are not alone.

I thought I was open, because I blog about preemies and I’m proud of my kids and all they’ve achieved. I’ve discussed difficult topics, but so often it’s in the written word, my safe space, and not in face-to-face talks. The NICU, its aftermath, and the heartache involved is such a part of the identity of our family, but I invite people to talk about it like a vacant house down the street. The subject of the house isn’t off limits, but no one really gets to see what is inside, what the house is made of. Its windows are dark, and no one is invited to enter. I didn’t forbid the topic, but I also stopped talking about it unless asked. I closed myself off and then wondered why my connection to people was limited…because I limited it. We all shutter our windows and lock our doors sometimes for our own safety, but there is a difference between protecting yourself and hiding.

I am going to write it all, everything I have to say. Most of it won’t be on the blog because there isn’t room for it in a blog format. If no one else ever reads it, my children will have a firsthand account of their earliest days and months, a gift that will hopefully make up for the fact that one out of two of them actually has a half-completed baby book.

I am ready to record the words, to give the story up, and then let it all go.

Gone Is The Long Babyhood

J LaughingRecently, J has taken ownership over his role as Big Brother. It used to be that M was crawling in all the wrong places (usually through J’s toys) and throwing all the wrong things (like J’s toys) and generally making a mess of things. But, as M has started walking more and crawling less, it’s as if her brother sees her differently. She’s no longer the baby who needs protection and redirection; she’s the little sister who is playing on J’s team. They run through the house and push toys all over the place. They squabble and squawk and giggle from one end of the house to the other. J’s imagination is on fire these days, and he thinks of all sorts of creative activities for them to do, which generally involve imagining that they’re repair people of some sort in large trucks. As hard-headed and opinionated as M is, she must not fully realize that J is organizing her play; she’s just glad to be allowed on his team.

What made me notice how much the play around here has changed is how J talks. Everything is “we” now. (We’re hungry. We want to go for a walk. We like peaches! We do not like to clean. We love dogs, Mama. We want more apples, please.) All this “we” business is adorable.

But, J also speaks for M about how she’s feeling or what she needs, which I actually find extraordinarily helpful. I can’t always see her signing or hear her babbling, so she’d developed a habit of just screaming until I came running. Now, J translates what she wants and yells it in my direction (usually in the kitchen). “MA-MA! M says she wants more blueberries, please!” I also find his translations sweet because he sees her pointing to her blueberries and signing more and he thinks to add the please part.

As with everything preemie-related, I catch myself watching them and traveling back in time. Two years ago, I couldn’t get much of a word out of J, and now he’s not only expressing his own needs in long sentences and paragraphs but he’s also expressing his sister’s needs. What happened to my tiny babies?

That long Preemie Babyhood that consumed the better part of four years is officially over.

Not-Jane

Having preemies affords some unique life experiences.

Like being friends with quadruplets.

I met my friend Not-Jane* in our Parents’ Reaching Out meetings at the NICU. After J’s birth, I was in desperate need of a support group. I was lost in the unknown, and the group of women I met in those meetings were the first people to validate my feelings. I am still in touch with a few of them.

I saw Not-Jane at the first meeting I attended. She was slim, and I had absolutely no clue she had multiples until she introduced herself. It turned out that J was only two days older than her four babies and that he was about a week more premature. I liked Not-Jane almost from the beginning, and I was curious about her experience of having four babies. After six weeks of passing each other in the NICU corridors, we became friends.

Not-Jane was a bright spot during long days, and I looked forward to daily check-ins with her. I remember huddling next to J’s bassinet, lost in frustrating thoughts, and seeing her walk through the doorway. We shared information and a little NICU gossip, and some of my clouds began to lift. Her friendship provided a sense of normalcy in a situation so outside the norm.

After J was discharged, I visited her at the Ronald McDonald house until the last of her babies was transferred to the NICU in her hometown. Then, I drove an hour and a half from my house to hers about once a month. It was RSV season, so we didn’t take our babies into public, for anything. Visiting her was respite from a very lonely winter.

I’ll never forget watching her juggle those babies. She lined up Boppies and marked bottles and organized a system to meet her babies’ needs. J was a very difficult baby during his first year, but seeing her conquer chaos was a reminder to me that my problems were temporary and could be overcome.

We celebrated surviving that winter with our first March of Dimes walk in April. We did it with other families we’d known in the NICU, and I was the only mother there who didn’t have multiples. With us were a set of twins, triplets, and quads. I was amused at all the double-takes and questions, because I could watch from the sidelines. No one noticed my singleton.

Every public outing for Not-Jane came at a price. People asked the most intrusive questions, like whether she had used fertility treatments to get pregnant. (When did that become an acceptable question for strangers to ask other strangers?) During our trips to the zoo, streams of people would stop us and ask if her babies were quads, and most of the comments were repetitive: “I don’t know how you do it!” and “I couldn’t have four babies!” and “They’re ALL yours?” Not-Jane had apparently heard the same things over and over at restaurants and grocery stores and everywhere in between because she appeared unfazed, but one time she leaned toward me and said, “What is my choice? I’m not going to stop going places because I have four babies.” I always admired that attitude, that her kids shouldn’t be punished because they were multiples, and as a result, her kids were excellent in public, even with people staring at them.

My favorite comment was when J was still a baby, and all five of our babies were lined in a row. Someone said, “You have FIVE BABIES!” Not-Jane replied, “Yes, we have quints,” and we laughed. We often met for lunch in the city. One time we streamed into a restaurant with our toddlers, who still looked like babies, and we occupied every high chair the place owned. I looked around the table at all those kids in all those high chairs, and I heard Jane’s voice saying, “We are the lucky ones.” I wanted to proclaim to the rest of the diners in the restaurant our success story, all the statistics these children had beaten.

And then I added M to our preemie brood, and Not-Jane mourned the fact that I’d missed out on another full-term pregnancy. I didn’t have to explain it. I knew she understood. She was one of the first people I told that I didn’t feel like I was done having kids, even though I’m done having babies. I knew she would understand that too.

Over the last year, circumstances have made our get-togethers more rare, and now I have moved five hours away. But, Not-Jane held my babies before most of their families did. She was one of three people I texted that I was being hospitalized with preeclampsia with M. I remember her kids as they were in the NICU, what each one of them looked like, and I can tell you most of the challenges her kids have overcome.

Some people sweep into your life at just the right moment. They laugh with you, worry with you, and cry with you. And no matter where they go in life, you feel a connection. With so many little people to consider, we seldom see each other, and when we are together, our conversations are punctuated with the chatter of six other voices. But, I am always glad to see Not-Jane, and I can hardly remember all my NICU firsts without thinking of her.

*Clearly, Not-Jane is not her real name. I’d like to protect her privacy, since she doesn’t go blogging all over the Internet like me. One of my favorite bloggers Beth Woolsey gives pseudonyms in this form, and it always makes me smile.

The Timing That Is Not Our Own

Closing on our first house

My husband and I are living in our fourth city as a couple, and as we prepare to move again, I can’t help but see a pattern to all the moves. With each transition, we changed a bit. We met new people, and we changed jobs. Our accomplishments and failures varied. Each place asked different things of us.

I see very clearly why we were here in this place, directly between a city with excellent NICUs to our north and a college town with an amazing preschool to our south. When we first came to look at homes before we moved here, I was newly pregnant, and our realtor had to remind us to view each home as parents. Did the house have a yard? Could you cook in the kitchen and see children playing in the living room? We had wanted a cottage near downtown, but instead we chose a comfortable home in the suburbs because it was close to my husband’s new workplace. We didn’t concern ourselves with the ratings of area hospitals or preschools, because we had no idea what lay ahead of us.

Almost from the moment we arrived with the moving truck, I was unhappy. Nothing about this place felt like home. In the six weeks before J was born, I wondered what we had done. And I knew my feelings weren’t the moving jitters that settle down after all the boxes are unpacked. I had moved enough times to sense immediately that this place would never be Home for me.

But, when we have kids, it’s not really about us, is it? With four years of perspective, I see vividly that this place was never about my husband or me. It was about what our children would need.

And, oh, how their needs have been met. Obstetricians who performed skillful emergency surgeries. An amazing NICU filled with dedicated professionals who cared for our children in all the ways we couldn’t. A pediatrician who has rejoiced with us. A speech therapist who helped J find all the words that jumbled in his head, frustrating him in ways he couldn’t communicate to us. A physical therapist who has known my babies since they were stranded in newborn bodies and who has been the only friend I’ve seen on a weekly basis for the last 3.5 years. A preschool with more devoted and talented teachers under one roof than a parent could ever expect, a place that has become a second home for my kids. These people have been life-sustaining in so many ways, and they have been an emotional oasis for all of us.

The days have been so very long, and I’ve wasted plenty of time yearning for new adventures for our family in a place that feels more like home. But, I’m amazed to discover as our time here draws to a close that it hurts to leave. This was the home of our babies, the anchor during difficult storms, our prison during winter quarantines, and our refuge during days that sucked the life out of us. Leaving here closes the chapter on tiny babies and NICUs. We came to this home as a couple, and we leave as a family.

This place has taught me about timing. We are not the masters of time, no matter how much we think we understand the plan. Having two tiny babies was never in my plan, but I would never change it. And living here might not have been of my choosing, but it was never about my husband and me. Our reason for being here was those babies who needed so much love and care in their early years.

And this week I’ve had one final lesson to underscore the point. Since M was born nearly 18 months ago, I’ve been saying that I didn’t want to leave her physical therapist until she could walk.

M took her first two steps at home this week, and she took four steps in therapy today. She is beginning to walk, the week before we’re leaving.

Sometimes, it is inexplicable how neatly the loose ends of life are tied.

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.

Why Women Leave

Me, when I used to be a teacher

Last year, I read Lean In. I am a mother with a Ph.D., so a discussion about women in the workplace touches on sensitive issues for me. I keenly feel the decimation of my career–or, on an optimistic day, the delay of reaching my professional goals–so I don’t really need anyone to remind me that I took my nine years of higher education with me when I left the workforce. And I agree that it is a terrible shame.

But, I always feel that the discussion about women leaving the workplace occurs in a vacuum. It doesn’t take into account real life. Yes, in theory, I would have a tenure-track job, and I would be awesome at it. In my time at home, I’d also be a wonderful mother, wife, daughter, sister, and friend. And then I’d do some community service for good measure. In theory, my kids would go to an affordable, safe, enriching full-time preschool, and I would have no guilt about leaving them there. And in theory, I would make at least half as much as my husband, and his job would come with the flexibility to pitch in on all the extras having kids requires.

That is not reality.

In her book, Sheryl Sandberg acknowledges that life’s demands are complicated. But, I always feel that the conversation is one-dimensional. It lacks the curveballs that life throws us, and we all, men and women, have them. Nothing goes just as planned, and for many of us, we find ourselves on journeys that carry us away from traditional employment. I always want to know when the discussion about women deserting the workplace includes women who are battling cancer. Or caretakers of elderly parents. Or military wives whose husbands move every year, limiting their ability to find employment. Or mothers of sick kids. Where do we fit? Because women leave the workforce for all sorts of reasons, and it is simplistic to discuss us as one monolithic mass of disappointment.

My first love before I met my husband and before I had my babies was reading. I devoured books as a child. I grew into a grammar nerd, and by far the best hourly job I ever held was as a grammar editor when I was just 18 years old. I always admired teachers and how honorable the intention of teaching is. A great teacher really can change a person’s life. Both my parents were teachers, at different points in their professional lives, and I think in my heart of hearts I always believed I would combine my three loves–learning, writing, and teaching–into a career. And I did, for a short time. I was going to be a professor, before I had preemies.

I never made a conscious decision to leave, and I have never made peace with the fact that I am gone. Never. So, to the woman at the academic conference who said ugly words of judgment and to the people in the grocery store who see me as a sweet, young, little mama–I am more than either of those characterizations.

Women like me may yet return to the workforce, but in the meantime, do you know what we’re doing? We’re giving back to the world around us. We’re getting well and taking care of our parents and holding down the fort and watching over babies in the hospital. These jobs are not easy, and the pay does not come in the form of dollars. But, is everything in this world about money? Sometimes, the hardest jobs are the ones with no paycheck and no vacation days.

I was handed a set of circumstances, and I would not exchange them for someone else’s. No matter how discouraged I may get, I am never sorry for the choices I’ve made. If I had it to do all over again, I would choose those two tiny babies: the ones who didn’t ask to be born and who suffered greatly in their first days and weeks.

Lean in? What I want to know is: when I can lean in, will the workforce accept me? Will it accept all of us who left for our own very good reasons? Or will we be asked what we’ve been doing for the last four years because a resume can’t define where we’ve been and why we left?

We still have prejudices in this country about what constitutes work and what makes a good employee, and I think any discussion about leaning in should also include the issues of affordable childcare, equal pay for equal work, paid leave, part-time employment, and flexible hours. We could do more as a country to retain good employees. And we could keep more women in the workforce. But, first we’d have to address why women leave.

And that answer is complicated.

It’s Time To Move On

I think we sold our house today.

I won’t trust that it’s sold until we have the check in our hand, but in the short term, it really makes no difference. It’s now time to begin rapidly packing up, shutting down this life we’ve made here. It’s time to put all our treasures in boxes and pull up stakes and move to a place that I hope will become a final destination, the place my children will call home.

I hate moving, and it’s always sad. This is our fifth out-of-state move in ten years. But, this move is different, and what is painful about this move is so different. It’s not the friends I’ve made, because I haven’t made many. It’s not the people I see on a daily basis, because I don’t see many. I’m not leaving a job behind or a school. The most important people in my daily life will all be going with me.

I am most sad to leave my kids’ preschool. The teachers there have been fundamental in shaping my kids, in giving them confidence as well as knowledge. They have pushed my babies to high standards, encouraging them to achieve new goals. They have loved my kids, cherished them in a way I never could have expected. I was so worried to leave J that first day at school when he was a 16-month-old baby who couldn’t crawl or walk or stand on his own. Literally, he couldn’t stand on his own two feet, and now? He runs and talks and laughs. He has a pack of boys he plays with. He is independent and confident and more outspoken than I could have imagined two years ago when he wasn’t speaking at all. The transformation in just the last six months has been phenomenal.

I am deeply saddened that M won’t have the same experience. She has only had four months at the school, but she already has such a joy and exuberance for learning. Her teachers thrill her. She watches for their reactions, and she soaks up their attention. M looks straight into the face of each little friend in her class with such excitement, as if they’re all her new best friends. I have no doubt she would love for me to just leave her at school everyday. And I would, if I could.

And our physical therapist. Our pt. Oh, how will I leave her? These last 3.5 years, she has known both my kids better than most of the people in their lives. She knows their personalities. She has been aware of the big and little things happening in our lives. She is one of the only friends I have here, one of the few women I see on a regular basis. During this time of such loneliness for me, she has been an island of reassurance and kindness. I don’t have to explain what has been hard about this life to her, because she already knows. But, she’s also a steady reminder that other families have it so much worse. She gives me the freedom to fret and question and wonder, but she also has great suggestions and advice just when I need them the most.

All the people I am dreading hugging goodbye are related to this difficult and beautiful journey we’ve been on. I swear everything about this place from the time I arrived five months pregnant and only six weeks away from delivering J until this very moment has been about having preemies. This entire chapter of my life’s book is about the magic of these kids.

And it doesn’t matter how ready you are to start writing a new chapter, closing the book on a place is difficult. Especially when it’s the place where you had your two tiny babies.

More Than You Deserve

I woke up just as stressed this morning as I was yesterday and the day before. I am fed up with negotiating over the sale of our house. This morning, I felt like I was walking around in a black fog.

Then, I heard M in her crib, and when I went to get her, she was sitting in her bed. She smiled her bright, toothy grin and held up a doll. I asked her if she was playing with a toy, and I took it from her. I kissed it and handed it back to her. She pretended to kiss it. I looked at that precious, joyous gift of a child, and I could feel the black cloud lift. I picked her up, and she started patting my back with her little baby hand, as if she was just overjoyed to see me.

Sometimes, having kids is draining. Other times they give you exactly what you need. And some mornings, they give you even more love than you deserve.