The Killjoy

I don’t want to be the killjoy. I’m practical by nature, but I’d rather not be the woman at a baby shower who stops light banter with some awkward comment no one wants to hear. But, seriously, at a baby shower who wants to talk to me? I have one horror story after another. Give me a condition, and I’ll tell you someone I know with it. I operate in some alternate universe, in which I have many, many happy endings to awful, traumatic, and tragic stories. Mostly happy endings.

I can count the non-preemie babies I know on my fingers. Preemie babies? That’s what I know.

My dearest friend from J’s NICU stay has quads. During our last trip to the zoo, I looked across all the children lined up, five toddlers and a baby, none of whom weighed more than 2.5 pounds at birth. I thought, “We are a walking ad for March of Dimes.” My world is foreign, totally foreign to most moms, and I’d actually like to keep it that way.

My sister-in-law has almost my exact due date with my son. I have been counting the days. She is now just two days from when I had J. The thing is: I don’t want to count the days. I can’t help it. I don’t know how to look at a pregnancy and assume it will be long and healthy.

I guess I wouldn’t blame her if she cut off all contact until the baby is due.

I don’t want to scare people, and I don’t want to depress them. I don’t want to be the person no one talks to during pregnancy. I want to hear fears, without overshadowing them with my own sadness. I want to be a sympathetic person, which means I can’t overwhelm others with my story. I am living in a strange and lovely world, but I have to find a middle ground between hiding that story and thrusting it onto people. I’d like to be a source of information and comfort for those who need it, and I’d like to share the vitality that comes with almost losing everything. I believe we should give back as much as we receive, and we have received so many blessings that it will take a lifetime of giving back to make any headway at all. But, being so passionate about a cause like preemies also separates you from other moms who have no idea what you’re talking about.

I don’t want to be the zealot; I just want to share love. And I’m figuring that balance out.

A preemie mom is a fierce mom.

And sometimes a killjoy.

The Lucky Ones

I was the one little girl in my ballet class who had hips. I was fully developed at 12, before most of my friends. My mom and grandmothers had no trouble at all getting pregnant and carrying their babies. An obgyn told me when I was pregnant with J that I should have no trouble delivering because all the room in my pelvis was “nice,” a moment that embarrassed my husband and still causes us to giggle to this day. I am healthy and somewhat athletic. I thought I was built to have babies. I always believed that I could do labor and delivery. I just knew it.
And I never got a chance to try.
I still struggle with how my two deliveries happened. There was nothing peaceful, magical, or beautiful about either one. Both were scary—terrifying, really. Both required major surgery. Both had complications. Both ended in tiny, tiny babies with long NICU stays. Seeing your child for the first time is still special, but I don’t think it has the same aura when he is whisked from you within seconds to be intubated and stabilized. The thought that your baby could die right before your eyes is a fear that I wouldn’t wish on my worst enemy. Neither my husband nor I saw J enter the world—the first people to speak to him were the doctors and nurses saving his life. My husband wasn’t even allowed in the room because I was unconscious. We prayed it would all be different with M—most of it was but not in a good way. I still had complications, a VBAC as an option flew out the window, and I was terrified and awake for that C-section. But, I had one lovely blessing: We got to hear M cry when she was born. It sounded like a tiny kitten mewing, but it was M and she was alive and we were there to hear it. Just like in other people’s stories, just like in the TV shows and movies, I looked to my husband, and I cried and said, “She’s here! She’s here!” I cherish that one moment because it was the one thing that seemed like it should have been, like what other people experience.
Sometimes I am a little jaded. Most women I know complain about some part of the delivery experience: it was painful, it was too long, they had to have a C-section, they wanted a water birth, the baby was whisked away, they had to take drugs when they wanted to go au naturel. I get it. I really do. I too wanted more control over my deliveries. But, here’s the truth: so much of what happens during labor and delivery is out of our hands. If you have a water birth with no pain meds or if you have a home birth in your own bed with your husband holding your hand or if you had a relatively quick and easy birth in the hospital, good for you. You should be proud, but you should not be judgmental because the simple fact that you had a chance to do those things is a blessing. So many things can go wrong in labor and delivery, and I believe modern medicine has separated us from that reality. It doesn’t mean you have to be frightened of the process or that you can’t have goals and dreams for what kind of birth you want. But, one of my pet peeves is when someone moans about not being able to have a drug-free delivery. I want to scream: “Do you know who you’re talking to?! Someone always has it worse.”
If you’re here, you probably have more experience with preemies than you’d like and so you know about pregnancies and deliveries not going as you’d hoped. But, I will say this: Both my tiny babies lived, and every time I feel a twinge of jealousy for other mothers with more normal experiences, I remind myself of that fact. My babies lived, and one of the joys of this journey has been a total transformation in my perspective. So many things in life are trivial now. It’s like I’ve had a near-death experience, only it was my children, and now everything in life is more precious, more beautiful, and more sacred. So, I allow myself a little room for sadness or disappointment and reflection on how things were so terribly different from how I’d always imagined. And then I smack myself around, look at my lovely children, and tell myself to be grateful. The truth is that NICU birth stories are terrifying by and large, but for those of us who leave the hospital with a baby, we are the lucky ones.
My friend with quads born at 28 weeks has said this to me many, many times: “We are the lucky ones.”

Out of the Blue

Sometimes, I think this journey is so mixed up in joy and sorrow, in early surprises and long delays, in personal sacrifices and favors given and received that I don’t know what to make of it. I know I’m supposed to write. I know I’m supposed to share my story. I know if nothing else I owe it to my babies to document their journey. But, how? How do you sum up the experiences in a few stories? How do you recreate the feeling of impending doom as you await the birth of a tiny baby or the joy of peeling out of the hospital with the baby in tow after a 91-day NICU stay?

How?

I am trying. I am trying to find the time and the energy to dig into my memories, my heart, and my soul to share what has been the most enriching, fulfilling, not-to-mention craziest experience of my life. But, I still feel incapable of really doing the whole experience justice.

I am praying for guidance as I attempt in my little human way to make sense of this journey, to find the purpose in it. As much as I know my children are miracles and gifts from God, I also believe there is more to the plan. Because, really, what healthy, young woman has not one but two 2.5-pound babies out of the blue? It’s like I got struck by lightning the first time, I ignored the lesson, and I got struck again.

So, I’ll just keep plodding along and hoping I find my way. Because, clearly, I cannot be left alone in a thunderstorm.

Accepting Help With Grace

I am fiercely independent. As much as it feels good to help others, I hate to be on the receiving end. It is most definitely a fault of mine that I’m a perfectionist, that I like to do things my way and to my specifications. I’ve long struggled with delegating. I enjoy the feeling of a job well done and of accomplishing things I hardly thought possible. I am terrifically competitive, with myself, and hardly a day goes by when I really have tackled all the things on the ridiculously long to-do list that I create each day. I have learned to manage these idiosyncrasies…I think. But, what has not gotten easier is asking for help–or even worse needing help. I really am just like my toddler who says “Self!” and pushes my hand away; I want to do it myself.

Here’s the thing: You cannot possibly do it all by yourself when you have a baby in the NICU. You can’t. You need to simultaneously talk to the doctor about that formula issue and find out the baby’s stats for the day from the nurse and hold said baby and take your other child to school and call the insurance company about the ever-increasing bill you aren’t so sure they’re covering and go to the grocery store and cook food to feed your family and check work emails which has become a career in itself since you’ve been away and recover from major surgery and pump breast milk like there’s no tomorrow.

There aren’t enough hours in the day. And if you’re exhausted and stressed, you’re not able to be as competent in the NICU as you need to be. The terrifying part of the NICU journey for me was never knowing what was around the next bend, so if you show up too tired to function, how will you make some of the hard decisions asked of you?

We were so lucky that even though we have no family in town, my mother and my mother-in-law basically took turns living with us. With M, it was absolutely crucial because we also had a little boy at home who needed attention. There was no way for both my husband and me to be at the NICU together unless we had help at home. Not to mention all the household chores I physically could not do. Our mothers ran our home, from caring for my son to overseeing his therapy and schooling to cooking and cleaning for us. They did everything I could not do, and there really aren’t enough thank-yous to ever repay them. EVER!

During our first NICU stay, I struggled to release my control on silly things like how the pantry was organized. During the second time, I was at first too sick and then too tired to care. I finally accepted that whatever help they offered was a blessing of their time and energy; it was a sacrifice for them. Who was I to demand how they organized my pantry? That’s like asking for help and then specifying how and when you receive the help. I’m embarrassed that I was ever so thoughtless! And I hope they didn’t notice.

To be fair to myself, I was learning how to accept help in a way I’d never needed it before, and I was suffering from the shock of having J at 26 weeks. And I was a new mommy, with all sorts of normal fears and emotions that compounded the stress of the NICU. But, with M, I was different. I was overwhelmed by the kindness and support our mothers offered–for a second time in three years. I was so amazed at the time they gave us–months and months of it. And I was relieved, that I could put some of the day-to-day burdens aside and focus my attention on M and the NICU.

My in-laws currently live with my ailing grandmother-in-law, and I find myself empathizing with both the caretakers and the caretakee. It is challenging all the way around, but what I keep coming back to is this one nugget of wisdom I gleaned from the NICU: Accept help with grace. Help is a gift, and it is a gift that you can pass on to others when it is your turn.

Besides, you never know when you might need help again. Like when you have another unexpected preemie.

Like a Monkey

I am so tired, and it has been a long day. The kids have been tag-teaming all day so that one naps while the other one is awake. So, just a quick thought for today. I was playing with J this afternoon, when he walked up me by holding my hands and scrambling up me with his feet. I could not believe that A) he is strong enough to do this after all the months we worked on rolling over, crawling, sitting up, and walking and that B) he is fearless enough, after being too cautious to try anything remotely dangerous. It was a simple moment, but for me it was thrilling to see him hanging from my arms like a monkey. Just an average little boy doing what little boys do.

Being Compassionate

One of the best life lessons that the last three years have taught me is how to be compassionate. When someone is sick or housebound, when someone has lost a family member, or when someone is just in a dark place in life, what do you say? What can you do? Before the NICU, I thought about people, I really did. Sometimes I stewed over situations that really had nothing to do with me. I felt sorrow for people, and I offered up prayers and sent positive thoughts their direction. But, so many times since I didn’t know how to fix their problem or even what to say to make it better, I just didn’t say anything at all.

When my son was in the NICU, sometimes the silence was deafening. Of course I knew people cared, but on the dark days, I looked around and wondered who was standing with me, who was supporting me, who wanted to help. And truthfully, most of us are too busy, too wrapped up in ourselves to take the time to be compassionate.

I promise I’m not trying to keep score, but I remember every person during the 150 days my babies were in the hospital who called me or sent a card or sent me a message on Facebook. Dear friends in South Korea called from literally halfway around the world. The last communication I had from a childhood friend who committed suicide was a message on Facebook. He saw that I was online one night, and he asked how my baby was. I gave him the pat answer, a few stats on his weight gain and oxygen levels, and I thought that would be the end of it. He had the compassion to ask more questions, and then to tell me he was thinking of me and praying for me. Now, looking back I suspect his own pain made him sensitive to the pain in others.

The beauty of being compassionate is that you don’t have to speak words of wisdom or fix a situation. Sometimes just being a lifeline, a warm hand on a shoulder, a sweet card in the mail, a friendly voice on the other end of the line, that is all you need to do. We just don’t want to be alone. We don’t want to wallow in self-pity and doubt. We want someone to recognize our pain and validate it.

Now, I look back, and I see so many missed opportunities. So many things I left unsaid and undone. And I am sorry for it. But, I have resolved to try to be more compassionate, which is not to say perfect. In the hustle of daily life with two small children, I still leave so much unsaid and undone, but instead of letting myself off the hook with an at-least-I-sent-them-positive-thoughts (as if people are automatically notified of these thoughts like I’ve texted them), I buy cards and send them, or I pick up the phone and use it, or I type out an email or a Facebook message and hit enter. Or with my ailing grandfather, I picked up his hand, looked deep into his eyes, and said, “I am so sorry, and I wish I could do more.”

You never know the joy your card or your hug or your flowers bring until you’re in a place of despair and sorrow. And I thank the NICU for that life lesson.

We Have Each Other

Ever since our first baby was in the NICU, my husband and I have a way of dealing with bad days. We’ll vent about whatever the problem is, and then one of us will always say, “Well, at least we don’t have a baby in the NICU.” Then, the other one will smile, and we have some comfort in knowing that at least we’re home together as a family. We have each other.

Inadequate

Last night, I snuggled next to J at bedtime. I felt his bony, little shoulder on my cheek. I watched him chatter and giggle, and then I closed my eyes and thought about those first two days after he was born. When we were separated. I saw him through a glass box, and then they wheeled him away to a hospital 30 minutes from mine. My husband visited him. My mother, my father, and my sister visited him. My mother-in-law and my father-in-law visited him. But, his mother did not. When I think back to that time, it feels like a Twilight Zone. They put me to sleep, they took my baby, and then I sat in a hospital room for two days waiting to see him again. It was surreal. Was I even pregnant? Did I really have a baby? Was he really alive? Was I a mother? I certainly didn’t feel like it.

On Day 3 of my son’s life, I was released from the hospital. I remember my husband wheeling me into the NICU for the first time. The sounds were foreign. The smells were foreign. Overwhelmingly foreign. My husband had to show me how to scrub properly. He took me to J’s isolette, and he introduced me to his nurse. I felt out-of-place, truly like a visitor. And then I looked at that tiny baby in the big pexi-glass box under the bili lights.
Inadequate. I was wholly inadequate. I felt powerless, helpless, and clueless. Oh, and swollen and terribly sore too.
“Mama, WAKE! UP!” And here we are, J’s smiling face in my own. I am the one who knows him best. I am a hero to him, all-powerful and full of answers. If only I could go back and tell the woman I was then that she wouldn’t always be inadequate. If only I could tell her to be patient with herself and give it time.
We were all thrown into not just the deep end but a whirlpool. We were sucked under and spit out. We all struggled, my husband, my son, and me. But, then we all popped up to the surface, we found our places, and now we’re a family. 
And I might be many, many things, but inadequate is no longer one of them.