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.

How My Kids’ Therapy Team Saved Me

My most recent blog post is at up on Preemie Babies 101: http://www.preemiebabies101.com/2015/07/kids-therapy-team-saved/.

Maybe one of these days I’ll actually blog outside of my role at Preemie Babies. Maybe, but no guarantees.

Recent Preemie Babies 101 Posts…

I’ve been so out-of-touch that I failed to even link to my most recent posts on Preemie Babies 101…

Making Peace with My C-sections

and

Vaccinations and Your Preemie

Amblyopia: The Hidden Eye Problem

My post about J’s eye issues is up today on Preemie Babies 101. Bottom line: Please have your kids’ eyes checked! J was cleared in the NICU for any preemie-related vision issues, and as many as 20% of children have some form of J’s eye condition. It is reversible at his age, but the older a child gets, the less treatable the condition is. It can eventually cause blindness in one eye. For more information, head over to Preemie Babies 101.

It Is Time

Hopefully, the last move with small children is behind us! We are settling into our new home, the one where we didn’t have tiny babies. This is the home with the big, wooden playset. This is the home with plenty of land for the kids to explore. I am so filled with joy that we are here, after so many months of talking about this place. This future was a dream of mine when I sat in the NICU with a tiny frog for a baby snuggled onto my chest, a baby attached to monitors that dinged and bellowed if I moved even slightly.

I am so grateful to be here in this place. But, I am so exhausted, so weary and so tired. Sometimes, the talker in me has nothing left to say. I’m correcting and guiding and entertaining two little ones, which can leave a mother with little emotional reserve, but the exhaustion is deeper than that. I am waiting, even in this joyful present, on the shadow of the past. I have spent the last five years moving and having tiny babies and caring for tiny babies and moving and then moving again. People have much worse, and I know I’ve been blessed. But, I’m tired, of chaos and stress and fears that whisper to me in the dark of night.

A few weeks ago, I sat on the same velvet-covered pew in the same church where I sat so many Sundays as a child and as a teenager and as a newly-married woman. My mind drifted from the sermon to a reflection of where I am. How did I become this woman? How did I have these children? Surely, I am still a girl with big dreams and plenty of spunk. Sitting there, I was overcome with the sensation of who I was before my NICU babies, the defining moments of my life. I will never be that person again, but for the most part, I am grateful for the person I have become. The one exception is the yoke of fear I carry around my neck, the fear of the unexpected. The most traumatic part of having my babies was that no one saw it coming. How can I ever trust the present when the future is so uncertain? But, then isn’t that life? Tomorrow is always a gamble, and today is always a gift. As I sat in church staring at the same stained glass I saw thousands of times as a child, I asked for help with this fear that sneaks in on me in the dark of night. It is time for me to release it, this one thing that most separates me from the girl I once was. I had the confidence of youth that things would work out, and in my adulthood I have realized that “working out” might have a different meaning from my intention.

Now, that we are in this present, I need some time to fill my emotional coffers. I need some peace. I need understanding and patience for the twists and turns of life. I need forgiveness for myself. But, most of all, I need to release this fear. It is time.

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.

This Beginning

My children are polar opposites. One is a boy, one a girl. One is reserved and sensitive, the other loud and gregarious. One an introvert, the other an extrovert; he needs quiet as much as she needs noise. One is careful and cautious, the other a very risky risk-taker. So, I guess it stands to reason that these two completely separate individuals would be born in polar opposite seasons, J during the middle of a long, hot summer and M born during the dead of winter.

The other day, I had the sensation that M was in the NICU again. The weather was cold and dreary. My husband was driving us home on the highway. I was in the passenger seat of the car watching the pavement rush past my window. The sensation that I was somewhere else was overwhelming. I could picture almost the entire 30-minute route to the NICU. I could feel the cold wind on my face as I walked from the parking garage into the hospital. I remember how my body hurt, how my blood pressure was so unstable that I had to recline the seat in the car to lower it. I could smell the NICU, hear the NICU, feel the NICU. My heart ached as if I were leaving M again, tiny in her isolette, and walking into the cold night for another long ride home.

I don’t think it will ever go away. A part of winter is now bound to those cold days, 59 of them, when my baby was away from me. And on hot, sticky summer days, I am transported to the same NICU but with a different baby. The summer belongs to J.

Sometimes, I marvel that the only thing my kids seem to share, besides their parents, is this beginning.

Confessions of a Preemie

I just saw a wonderful post written by a NICU nurse that outlines all the differences between what we expect from a full-term baby and the reality of a preemie. I remember in those first days with J being completely swamped by all the new terminology, the murky expectations, and lots and lots of fear. Over time, just like any other new mama, I began to understand the basics of J’s care, what he wanted and needed, and what made him special and unique. For preemies, though, there are so many variables that make understanding your tiny baby challenging. I hope Nurse Jodi’s explanation can help! Here’s the link to her original post: Confessions of a Preemie.