Friday, March 21, 2014

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.

Thursday, March 20, 2014

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."

Monday, March 17, 2014

Why We Walk

J at his first March for Babies walk

I never participated in a charity walk or race before my kids were born. Sure, I donated to other people's causes, and I volunteered my time. But, I never directly participated in fundraising for a national charity.

This will be our fourth year to walk in our city's March for Babies fundraiser for the March of Dimes. Because we are moving this year, it will likely be our last.

Why do we participate? For many reasons. The first year we were just coming out of a very long nine months. J was born 14 weeks early, and then he was hospitalized for 3 months. He came home in October to RSV season, and we were quarantined for five months in a place where we had no family and very few friends. During that winter, I lived for the March of Dimes walk. In the spring. When our lives would finally thaw and we would begin to operate as a normal family. When I could take my son into public and, for the first time in his 9 months, I could show him off. When people would see me as I was: a new mother. When we could go to stores and restaurants and sporting events and all the other places I'd dreamed we'd go during those months of isolation.

That first March of Dimes walk was a chance to enjoy the sunshine and warm weather with friends we'd made in the NICU. They were like us: pent-up, exhausted, emotionally-spent, fragile. But, they were also like us: deliriously happy to reenter civilization, with healthy babies.

And I'll be brutally honest: That first March of Dimes walk was a chance to actually celebrate. To breathe. To relax and enjoy being a family of three. We had been in survival mode for so long that there had been little time to celebrate. And, if I'm being truthful, other than having the support of our parents, we had felt alone during those nine long months. So many of our family and friends were scattered in all the places we'd lived, and their physical distance often translated to a distance emotionally. They had no idea what our daily lives actually looked like. And though I'm sure they cared, we felt that little surrounding the surprise birth of our son had been celebratory. There were no showers, no parties, nothing to mark the homecoming of our miracle. And if I'm being really honest, I was terrified for a long time to celebrate J. He was a 26-weeker. Anything can happen to a 26-weeker in the NICU, and all through RSV season, I held my breath, praying that an illness wouldn't unravel all the health he had worked so hard to gain.

I've often wondered how my son was so fortunate. How could he have no lung damage and be born so early, without the benefit of steroids to strengthen his lungs for the ridiculous task of breathing 14 weeks too soon? How? As I've learned more about prematurity, I've come to realize that question has many answers, but one contributing factor was the surfactant his lungs received in his earliest hours. They allowed his lungs to inflate and receive the oxygen that every cell in his body needed. So, surfactant not only helps the lungs but every other precious part of a preemie's tender body. March of Dimes researchers are credited with developing the surfactant therapy that likely made a difference in J's outcome. Would he have lived without it? Maybe. Would he have the same quality of life? Definitely not.

Our second March for Babies walk was miraculous because we were with my friend with quads. Here we were, two healthy, young women back on our feet after two difficult years, and sprawled in front of us in strollers were five preemies, the largest of whom weighed 2 lbs. 8 oz. at birth. In fact, I added all of our babies' weights and discovered that together they weighed just over 12 pounds. I thought all our days with tiny babies were behind us, and I delighted in our future.

Last year's walk was difficult because my husband was on a business trip in London and was unable to participate, but it was no less significant to us. In that last year, I had gotten pregnant, had a relatively uneventful high-risk pregnancy, developed a surprise case of severe preeclampsia, had another 2.5-lb baby, and weathered another NICU stay. There I was at the same walk representing not one preemies but two tiny babies.

We decided this little peanut was still too small to venture out for her first March for Babies.

Somehow, it seems fitting to make this walk our last. It doesn't mean that we won't continue to donate to the March of Dimes, and it certainly doesn't mean that we won't continue to find ways to give back to our preemie community. If we meet our goals this year, we will have raised over $5000 for the March of Dimes, which is exciting for us. But, with moving and leaving so much of our NICU days behind us, it feels like it is time to say goodbye to the March for Babies walks as well.

It's not about the money. It's not just a walk. For us, March for Babies is intensely personal. It's about making lemonade out of lemons. It's about encouraging other families like ours. It's about putting our children's names and weights on t-shirts and declaring them as the survivors they are. It's about recognizing the babies who weren't as fortunate as our babies were, and it's about calling attention to so many conditions and diseases that remain shrouded in mystery.

To put it simply, we walk for our children and for all the other children like them.

Wednesday, March 12, 2014

How A Vitamin Should Have Stopped My Labor

We all say things. All day long. We comment and chat. We offer up opinions and advice. We discuss. We make small talk. But, do we realize the impact of our words?

There is a person I've never met, and she doesn't even know that she broke my heart.

I was a new mother to J. He was six months old, and he'd been out of the NICU for just three months. I hadn't slept a night straight through in six months. All the stress of bringing him home had finally decimated my milk supply. I was emotionally raw. And exhausted. And so fragile.

A friend mentioned to me that her doula wondered why I'd had my baby so early, and my friend relayed that she'd told her it was a mystery. The doula wanted to know if I'd been taking my prenatal vitamins.

Still, after three years, that one comment has the ability to cut me to my core. I felt my heart sink, and in that moment, I was completely at a loss for words. I, a talker and a writer and a teacher, I had absolutely nothing to say.

I think back to the woman I was then. I just needed a big hug. Not a slap across the face.

It's such a casual comment. I realize no malice was intended. And the comment should never have been shared with me because it was judgmental and hurtful and ignorant. Shouldn't a doula, a woman who has had babies and who delivers them, shouldn't she know that the human body is both miraculous and confounding? As human beings we should never be so bold as to assume we have all the answers. And because pregnancy involves two lives, it is that much more confounding.

It's so naive, the idea that a vitamin could have stood in the way of preterm labor when all the heavy drugs they threw at me did nothing. A vitamin?!

I realize that blaming me is a defense mechanism for some women. Surely, if I somehow caused my babies to come early then what happened to me can't happen to someone else. It is natural for us to want to assure ourselves that someone else's nightmare can't become our own. But, every time I see a prenatal vitamin, I think of those words, so unsympathetic, so callous, so hurtful.

And it reminds me to reign in my temper. To watch the words I use. To apologize when words come out sharper than I intended. Because sometimes the things we say stick with people and hurt them in ways we can't imagine.

Monday, March 10, 2014

The Blood Pressure Monitor

I went to my podiatry appointment this morning. It's the Monday after the time change, so I was a little groggy. And I felt the doctor was less chipper than usual, probably because he is also groggy. But, I left feeling completely out of sorts, and on the way home, I tried to decipher why.

It's all for the most ridiculously mundane reason: I had my blood pressure taken, and I wasn't prepared for it.

How silly is that?

I never even knew what good blood pressure numbers were before preeclampsia. I knew high blood pressure ran in my family but only in people older than 40. So, as a young, healthy person, I paid very little attention to it. I never even thought about it when I was pregnant with J. But, after the shock of preeclampsia with M, blood pressure cuffs give me the chills. They are revolting. The sounds they make take me right back to having my blood pressure taken every fifteen minutes. For days. Lie this way, turn that way, tip your body back, relax, don't talk, try to rest and hope that the next reading is better. (How do you relax when you're living by those numbers?!) Now, at a podiatry appointment a year later, someone pulls out a blood pressure cuff, and the fear absolutely floods me. I tried to make a joke about it to the nurse, but it sounded hollow. It really wasn't funny at all.

The podiatry nurse has daughters born at 24 and 25 weeks, so during every appointment, we chat about how our preemies are doing. We talk about changes in our NICUs and what life is like with preemies and how people who haven't lived it just have no idea. His youngest daughter recently started walking unassisted, he told me, and she's two if I remember correctly.

I love conversations about preemies, because now it is my home. It is my world. And I rejoice in it.

But, the stupid blood pressure monitor? I wanted to fling it off of the highest building, which is pretty unfair because it's not really its fault I have such terrible associations with it.

M helped me make peace with so much of the NICU trauma that I don't have many triggers, and I guess until this morning I didn't realize the power the blood pressure monitor has over me.

I talked to the nurse about his triggers. He laughed about how the coffee pot when they first brought his daughter home sounded just like the alarm on her feeding pump. Get a hammer and kill it! But, it's only a little bit funny.

Even walking into the podiatrist's office is difficult. It's on the same floor as my high-risk doctor's office. When I park the car, I think of all the visits I made here. Each week, I had progesterone shots in the hopes that M's journey would be different. (Well, it was but not in the way we'd hoped.)

Every time I drive downtown, I am a new mother again with a sick baby in the hospital. When I go to the town where my son's school is all my memories are of his early years and how difficult they were. When we drive to the town where my son was born all I can think about is that night in the hospital when they couldn't stop my labor. When I drive to visit my best friend from the NICU, I think of all the trips I made when all our kids were on lockdown and we only had each other.

From the first six weeks we lived here when J was born so suddenly until this moment, everything about this place has been about preemies. I know I can't make up my mind because one day I say I don't know how I'll leave this part of our lives behind because it has changed everything, and today I'm saying the ghosts of the NICU are in every closet and I can't get away from them.

We are moving this year to a place where the memories aren't ever-present. They will be memories, not everyday reminders. While I'm sure I never want to forget all my babies' firsts and while I'll always hold dear the places that have made my children's successes possible, I can't help but think it is time to put all the visceral reminders in the past.

We can leave the house where we brought our tiny babies home. We can leave the cities where our babies were born. We can dust off the NICU cobwebs that seem to be sticking to us, and we can start fresh in a new place.

But, I am probably deceiving myself if I think I can ever look at a blood pressure monitor the same way. At least the next time I see one, I'll be better prepared.

Sunday, March 9, 2014

From Afar

In some ways, I get tired of all the repercussions of the Internet and smart phones and people always being so distracted by technology. I guess I am a Luddite. I think we should get more fresh air. I think we should have less distractions. I think we should have boundaries that protect family time from the encroaching working world.

But, I cannot imagine having preemies without the support of other Preemie Mamas. This has been a lonely four years. The loneliest of my life. It's the nature of having small children. It's what happens when you have a baby who can't go into public. Just the schlepping into and out of the hospital for five months isolates you because your heart and soul remain trapped in that NICU with the baby you leave behind everyday. It's just so lonely.

I've emailed and shared Facebook messages. I've blogged and read blogs. I've texted some of my worst fears to friends I've never even seen in real life. And without that support, where would I be?

It gives me such great joy to share my experiences with other parents in similar circumstances. I need to feel needed. I need to feel that I'm reaching a virtual hand out to other families like mine. Sometimes, this part of my life is so dominant that I wonder how it won't always define me. How will I leave this all behind? It seems so consuming to be something in my past to which I casually refer when someone asks me at a consignment sale what size baby clothes to buy (like I have any clue).

I run errands. I pass people I don't know. I shuttle kids to and fro. I smile and make polite conversation, all while I carry this baggage. We all have baggage, so I don't mean it as a complaint. This baggage is mine, and I wouldn't trade it for someone else's. It's just that when I feel so disconnected in my day-to-day life in a place that has never felt like home, I find a home among people I've never met in real life. They have been friends to me when I've been in a black hole. And this is the beauty of technology, of blogging and texting and Facebooking. With everything humans touch, there is good and bad, and for me the good of technology has been forming communities with people who share my experiences. Less than 1% of women in this country have experiences that mirror mine. I would never connect with this preemie parent community without the benefit of technology.

So, this morning, after a series of Facebook messages with another Preemie Mama that both broke my heart and made it whole again, I am thankful for all the women who have supported me. From afar.

Monday, March 3, 2014

M's Homecoming Day Party

I wasn't sure how M's Homecoming Day party would turn out. We invited about 20 family members, and in the days before the party, fewer and fewer people said they could come. We ended up with so few people that I told my mom and my mother-in-law that I hated that they had put so much effort into a party just for us. But, as it turned out, I am so glad we threw M a party. The time with family was wonderful. M was delightful and put on a show for us, dancing in her high chair and smacking her cake to bits. She loved being the center of attention (probably not for the first or the last time!). As I watched her giggle and glow, I was so happy. A bystander who didn't know our story would never know M wasn't always the picture of health. And there she was, so full of life, so precious.

Next year, I intend for us to begin celebrating M's birthday at her actual birthday in January, and I'm sure we'll do something small to mark Homecoming Day. But, my advice for anyone on the fence about acknowledging a Preemie First Birthday or Homecoming Day is to do it! Though our gathering was small, it was full of joy, and it was the perfect way to mark M's first year with us.

My mom made the lemon cake

And my mother-in-law made all the decorations

The theme was sunshine, and I thought it turned out so lovely!

Look at that twinkle. She is definitely trouble.

Saturday, March 1, 2014

Homecoming Day!

From this barely 5-lb baby

and this little love

to this big girl in just one year!