Grace in Life

The last two months have taken me away from the world of preemies. We’ve been building a house. I started back to work for the first time in two years. M graduated from therapy. It’s like we’ve hit cruise control as we fly down the highway away from the Preemie Years.

Both kids are having incredible growth spurts. At M’s two-year check-up, she was already in the 30th percentile; as a three-month-old, she still weighed 5 lbs, so her growth over the last six months has been phenomenal to witness. J apparently doesn’t want to be outdone, or shorter, than his sister, and finally he’s not the smallest 4-year-old we know. He’s gone from 2T clothes to 4T clothes in less than six months.

My preemies are big kids now. They run and jump and play. They scream and fight. They have crying fits and tantrums. They laugh and squeal with joy. They climb and slide and dig in the dirt. They eat and talk–and eat and talk at the same time. We’re so busy that some of these moments pass me by, but, honestly, at least fifteen times a day, I pause just for a second to reflect on these people my babies have become. I never lose sight of who they were, the limitations they faced, and the dark places that trapped us.

I have no doubt that I am a better mother and a better person than I was before it all, but sometimes I still feel tangled in memories that I cannot seem to quite escape. For the first time in more than fifty months of mothering, I scheduled no therapy this month. I talked to no therapist. There were no discussions about development and ability and goals for the future. Some parents never get there; some kids always need extra help. And that fact crosses my mind nearly every time I watch the kids play. From the outside, I look like every other mom at the park, but I’m not thinking of what I’ll cook for dinner or what time we’ll leave. I’m always here and there, in the now and past, comparing the tiny baby images in my head to the children I see running around me.

Just when I think maybe it’s time for me to bow out of this community, something pulls me back. Today, I got a beautiful e-mail from a reader telling me her story, which sounds much like mine and probably yours too. She said things only mothers of preemies say; her words take me right back to that place. And now I’m not so sure I’ve said all I want to say about having tiny babies.

One thing that I’ve been thinking lately about these last four years is that one of my favorite statements about parenting small children was never more true than with preemies: “The days are so long, but the years are so short.” It is difficult, challenging, and exhausting work, parenting children who have special needs. Then, you blink, and that tiny baby who fit in the hollow of your chest is so heavy you can barely carry him. But, with our babies, there’s also another line too: “The babies are so tiny, but their spirits are so big.” And the more time that passes, the more I believe that there’s just something special about tiny babies who are a steady reminder of grace in life.

The Spot I Will Miss

The backyard, before we made it our own

I had a dream last night that we sold our house. I must be practical even in my subconscious, because I worked through the entire negotiation phase in my sleep. And when we were done, I was so happy. I didn’t feel any sadness about leaving this house at all.

When we put our house on the market a few weeks ago, it was with great relief. After months of weekend projects and nonstop cleaning, I couldn’t wait to be done with it all.

With each showing, I ask myself if I’m really ready to leave this place.

This was our first home to own. When we bought it four years ago, I walked around the perimeter, examining each brick, thinking to myself: I own every brick on this house.

When we bought this house, I was newly pregnant. Everything was fresh and exciting. The world sparkled, and those four walls housed so many hopes for our future.

Nothing turned out as I had planned it.

I discovered the house was fine, but I desperately wanted to relocate it. We had moved three times before, and never had I disliked a town like this one. I felt stuck before I even knew how stuck we were, because six weeks after we moved, we had J 14 weeks early. Now, that is stuck. When you have a baby in the hospital, then you know what stuck is.

Our house was both a refuge and a prison, depending on the moment. I both loved and hated it. It was solid and well-built. We made it our own. We made it a home, but it was always temporary. And we were always looking toward the future, when we wouldn’t need downtown NICUs and high-risk doctors and specialists, when we could cut our ties with this place.

After we listed it, I walked around the house and took notice of all we have done to it. Our touches are in every room. I am so sentimental, and this is the home where I brought my NICU babies. So, I was surprised to discover that everything that matters really can be boxed up and taken to our new life. The house has so much baggage for me that it won’t be a bad thing to start over again, in a place where the world sparkles.

I commented to my husband that for every good memory in this house, I have a sad one.

But, there is one spot that I will miss, a place in the middle of the deck my husband built. It is where J took his first steps. Where I sat, pregnant with M, and watched J play in the backyard. Where I pushed babies in a swing. Where we dined outside at our travertine table with company. Where my husband and I listened to the chatter of birds as we discussed our future. It is the only part of this house that is all joy and no sadness.

There it is, the one spot I will miss.

The winter before the deck was finished

A tired mama sunning with her baby

I looked out the back door one morning to see this…

J and his kitten

I was pregnant with M when this photo was taken.

The wisteria in the spring

Lunch with NICU friends

Frozen

I freeze up when people say how terrible the last month of pregnancy is.

Or how they wish they’d just have the baby early.

Or how swollen their feet are.

Or how they can’t sleep.

Or how huge their baby is–or feels like he is.

Two pregnancies, two preemies, and many months later, and I still freeze up. I sincerely don’t know what to say.

Because what’s in my head–about how I wish I knew exactly what they meant, about how I wish I’d had big babies, about how I wish I had gone full term with just one of my babies, about how I’ll never have any more babies, no matter how I wish I could change those circumstances. All those thoughts swirl in my head. I know I can’t say any of them, and I am sorry to hear people are miserable.

It’s just that having your baby early spares you none of the pain. It brings so many painful, hurtful, awful things instead.

I’m sure no one would suggest they’d rather have two pound babies. That’s not what they mean. That’s just where my head goes. And I know it’s not fair to lay my experiences on them.

So, I say nothing. I try to offer a sympathetic smile. But, I’m sure my face, as it usually does, betrays me. I am an open book.

I’m afraid I just look frozen.

Curing the Chaos

My children have a new daytime sleeping routine. They tag-team. My husband calls them whack-a-moles. One pops up, and the other goes down. At 10 a.m. M takes a morning nap. At 12 p.m., just at J is falling asleep for his nap, M wakes up. At 2 p.m. J rises, and they overlap for a few minutes. Then, I put M down for her afternoon nap. The synchronicity of it is unbelievable. There is not one minute in a 12-hour stretch that I truly have to myself.

The end result is chaos all over the house, from the kitchen to the mail bin to the laundry pile. The bonus room has a splattering of toys from one end to the other, like someone stood in the middle and threw toys in every direction (which he probably did).

The chaos is also in my head. Gone are orderly days when I planned anything, even something as minute as when I wash the dishes.

At 2 p.m. today, I took my first look in the mirror, and what a fright I found in a robe and sweatpants. “I am a skunk!” So, during my daughter’s afternoon nap, I put Sesame Street on for J, and I took a shower. I got dressed. Then, I looked around the mess to see where to begin, an attempt to put things back in order.

And I sat down to blog instead.

Oceans Apart

Yesterday, I went through our bins of preemie and newborn baby clothes. I was surprised at how little emotion I felt as I methodically separated the clothes into piles: donate to the NICU, sell at consignment, and keep for the kids. There were only a few items that I kept for the kids, just a few reminders of their time as tiny babies. I thought I would be sad as I pilfered each bin, ruthlessly getting rid of the clothes my babies wore when they were tiny. When they were in the NICU.

In an odd way, it was the realization that I will never have another tiny baby that made me sad. It’s not about the clothes at all.
So, as I worked at my task, J wandered over to me. He now has two favorite words: no and why. I love both of them, because they mean he’s developmentally where he should be, challenging and questioning everything about his world. Until he asks me “why?” over and over and I run out of answers. This serves me right for all the questions I asked as a child.
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J: “Mama, what doin’? What doin’, Mama?”
Me: “I’m sorting through your baby clothes. These are the clothes you and M wore when you were tiny.”
J: “Why?”
Me: “Why am I going through the clothes?”
J: “Why, Mama?”
Me: “I’m going through the clothes so we can give some away.”
J: “Why?”
Me: “Because we don’t need them any more.”
J: “Why?”
Me: “You’re big, not tiny any more. You and M can’t fit in these clothes.”
J: “Why, Mama?”
Me: (Sigh…) “Because you grew.”
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I held up a tiny onesie, one that I’m keeping for J. It’s the size of my hand. It shows how small three pounds really is. I held it up for J and told him that when he was little he could actually wear this onesie.
He looked at it, he looked at me, and then he ran off. The conversation was over. And he has no idea what I’m talking about. For him, the idea that he was ever tiny makes no sense. He still lives in the here and now. The past is too far gone for him to appreciate, especially a past he can’t remember.
But, some days I feel haunted by his past. His past was the one that marked me, changed me, shifted everything in my life. His past is the one that terrifies me with what ifs. Now I know so much more than I knew then. Thank goodness I had no idea how fragile his life was.
What if that tiny baby hadn’t lived?
I know one day he’ll be bigger. One day he’ll have more perspective. One day he’ll have his own big babies, and he’ll be amazed by the trinkets I’ve saved from the NICU. That onesie will shock him when I hold it up, a witness to how tiny he really was.
But, now? Now, it means nothing. J and I are oceans apart. All he knows is being big and healthy. He can’t imagine that he was ever separated from me, that he ever lived in a hospital, that his life was anything other than it is now.
And I keep imagining him as that baby, that tiny, fragile, fit-in-your-pocket baby.
I’m glad he doesn’t know what I know. Actually, I hope he never knows. I want him to know his story. I want him to read the journal I wrote just for him. I want him to grow up knowing he’s special, that his life has meaning and purpose. I want him to sift through the trinkets I’ve saved, the microscopic blood pressure cuffs and the tee-niny hospital ID bracelet. I want him to appreciate where his journey began, and I hope that he’ll love that his mother and father tried so hard to make the most of his first days in the world, though they were spent in a hospital. Maybe he’ll even read these words. 
But, do I want the man whom J will become to ever know what his mother and father actually felt? Never. I hope he has big babies. I hope he rejoices in his big babies, and I hope he never has to see them in a hospital.
I hope his babies are so big that they skip newborn onesies. I hope J’s wife complains that her babies didn’t even wear all their newborn clothes. I hope I’ll smile to myself and think about how J was six months old and wearing his newborn clothes. I’ll think about that first onesie he wore, the one his daughter can’t even fit on her doll. And I’ll be so glad for him.
In some ways, I hope J and I are always oceans apart.

Letting Go

I wonder if all parents feel this way.

I want to teach J to be brave. I want to let him go. I don’t want to shelter him and fret about him until he’s unable to forge his own way.

I confess that I still wipe down grocery carts when I shop with J, but generally I’ve put away the hand sanitizer and the alcohol wipes. I let him scrape his knees and hang off the deck rails, the ones close to the ground, when he pretends to be Super Grover. And when we get to the doors of his preschool each morning, I let him go.

I take M to Mother’s Morning Out. Other people care for her. She touches other babies, babies with runny noses. I let her go.

But, I never, not one, single day, leave them without thinking about their dots for fingernails, their heads the size of a clementine, their bodies hooked to machines. I never, not one, single day, walk away without looking back, glancing back just like I did when I left the NICU. I need a parting glance. I need to fill my heart with them, even as I walk away. I must leave. I must let them go, even when I’m afraid.

Call me crazy to wipe down shopping carts. Call me crazy when I institute strict hand-washing guidelines in our home. Call me crazy when I fret over the beginning of RSV season. Call me crazy. You wouldn’t be the first.

But, if you haven’t walked in my shoes, you don’t know what it’s like to hold a baby whose body fits in your hand. And you don’t know the strength it takes every day to make the choice to let your kids be kids. Just because I see preemies when I look at J and M doesn’t mean the world sees them that way. And I don’t want my kids to always be preemies just because that’s what I see.

Maybe other parents feel this way too. It’s just they see newborns instead of preemies when they look at their kids.

What My Heart Sees

Last night my husband called me into M’s room. This is what I saw with my eyes:

But, this is what I saw with my heart:
And words can’t express my gratefulness. My eyes met my husband’s eyes, and I saw my emotion reflected in his eyes. His smile matched my smile. Both of us thinking about the baby M once was.

Just Keep Paddling

Every time we drive downtown, I am transformed into that woman. She’s terrified, and she’s lost. Every building is unfamiliar. The landscape is one road sign, one mile marker, and one interstate exit after another defining the distance from home to the unknown. She has only lived in this strange city for a matter of weeks. She has no friends here. A family member or two come to visit and to help, but she feels so very alone. For the first time in her life, she has no community, no support network, and no friends to help her on the most difficult journey of her life. She is lost, physically and emotionally. She never expected to be here. She has no idea how to get home, either metaphorically or in reality. Life bounces from one car ride to another, one traffic jam to another, a series of moments that divide one trip to the NICU from another. The only times she feels secure is when she’s with the only other person in the trenches too. She clings to his presence.

Until the day she had to drive to the NICU by herself. She had to park by herself, walk to the hospital by herself, pass the happy people leaving the hospital with balloons and presents and healthy babies by herself, ride the elevator by herself, sign into the NICU by herself, and scrub by herself. She had to ask hard questions by herself. And maybe most difficult of all, she had to touch that tiny baby, take his temperature, and change his diaper, using just the tips of her fingers through the holes of the isolette. By herself.

And she realized that she could do it all. She could do it all by herself.

There are things in life I don’t understand, people I don’t understand, and problems I don’t understand. But, since those days, I empathize with people who feel lost, for whatever reason. I can’t diagnose their problems, I don’t want to judge their problems, and I certainly can’t fix their problems. But, I get it. What it feels like to be lost. What it feels like to have so little hope. What it feels like to wear your pain like an ugly coat.

But, what gives me more strength than anything to face the unknown is the knowledge that I faced down the fear. I overcame sadness, loneliness, anger, and loss. I can’t say it was easier or harder than someone else’s journey, but I can say it was awful. And I wish I could be a beacon of light for someone bouncing around in a skiff in a foggy ocean, wondering where they’re going and when they’ll get there. I just want to tell them to keep paddling. Just keep paddling. Don’t give up.

You are stronger than you know.