Preemie Birthday Blues

I’ve written about how preemie birthdays are tricky here and here and here and here! And that’s probably not even the extent of it.

I used to think after the big First Birthday, preemie birthdays would get better. And they have. But, the Dark Days are still like skeletons in the closet or ghosts lurking in the room: I don’t want to acknowledge them, but they’re present no matter what I say or do. I can’t change what happened, and I can’t change that it haunts me, even though the passage of time gives me so many good memories to outweigh the bad.

On a preemie Facebook page, I once saw a mother ask if anyone else had felt sad leading up to a preemie’s birthday, and it was like someone unleashed a dam. A torrent of women rushed forward with their experiences, saying they thought no one else understood. They felt guilty for their feelings, as if they could force their way toward happiness for a day that should, in theory, be a joyous one.

And then there were the naysayers, those women who must take some satisfaction out of digging their heel into people already down: “I realize the blessing my child is, so I choose to celebrate the day.” “I could have lost my baby, so of course I enjoy his birthday!” AND, my favorite, “According to the Bible, you can’t question the will of God and be truly grateful at the same time. I am grateful for my daughter, so I don’t dwell on how she got here.”

I won’t get into a religious debate, but I have a totally different take on it. I don’t think that sadness and gratefulness are mutually exclusive. Besides, we’re discussing feelings here. Someone can’t help how she feels. You can choose what you do with your feelings, but you can’t erase a feeling just because you don’t like it. That’s terrible advice! And acting superior to someone, especially in the Preemie/Special Needs community, because you aren’t troubled by something that troubles others is problematic anyway. I kind of think it makes you a self-important, unsympathetic, a-hole, truth be known.

I’ve also noticed a difference between preemies born before 32 weeks and after. Here’s where I get on my soap box about how all preemies aren’t created equally. Some preemies skate out of the NICU in a few hours or days or weeks. Those parents are probably–but not always–less traumatized than say the families with babies hospitalized for months. So, I always want to congratulate those moms who say “I had a 34-weeker, and I’m fine with her birthday.” Good for you, but I’m not at all okay with either of my babies’ birth stories, thank-you-very-much.

So, now that I’m approaching my 4th birthday post-NICU with my first 2.5-lb baby, I can say this: It does get a little easier, but I’m still counting down the days. I’m still thinking about the girl I was four years ago. I’m thinking of that day and how it all went down. I’m remembering things said and things unsaid, things done and undone. It’s all there, just as fresh as yesterday.

The biggest difference between J’s first birthday and now? I don’t feel the need to apologize for my feelings. Birthdays are hard for me, for all the reasons I’ve said, and maybe they’ll always be hard for me. As the kids grow, I’ll celebrate with the best of them. We’ll have parties and we’ll laugh and we’ll eat cake. But, I’ll never forget where I was on that day and what happened. After all, I am my children’s mother. Even if no one else feels the pain of their early months, surely I do, and I’m entitled to it.

I accept the Preemie Birthday Blues for what it is: the anniversary of the beginning of a very difficult time, which also happened to coincide with the miracle of my baby’s birth.

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 it turned out so lovely!

Look at that twinkle. She is definitely trouble.

Let Her Eat Cake

Today, I’m over at Preemie Babies 101 with a post about Homecoming Day and celebrating first birthdays.

Let Her Eat Cake: First Birthdays for Preemies

Homecoming Day

J was supposed to be born in October, a wonderful month to celebrate birthdays. Changing leaves. Cool, crisp air. Carving pumpkins and anticipating the coming holidays. What is not to love about October?

M was supposed to be born in March, another great birthday month. Where we live, it’s the beginning of spring. The greenest of green leaves. The excitement of gardening. Everything fresh and new. And plenty of cool weather.

I always secretly felt sorry for kids with July birthdays (like my mom). And I wondered who has babies at Christmas?

I do.

(This is a lesson in judging others. Don’t do it, even if they are just thoughts in your own head.)

J was born in the depths of a hot, humid summer. He won’t have class parties. His friends will be on vacation. He’ll have pool parties every year, because it’s far too hot to do anything else.

M was born just 8 days after Christmas. I’m sure she’s destined for joint Christmas presents. Poor thing. Who wants to party at the end of the holidays? Her birthday hits just after people have recommitted themselves to exercise and diets, to changing their lives, to getting back on whatever bandwagon they fell off of the year before. On M’s birthday, people go back to work after the fun of celebrating the holidays. I am sure she’ll feel overlooked.

Birthdays for preemies are hard days for their parents. I’ve decided they will always be bittersweet because I’ll always return to that black hole when I thought I’d lose them. I can’t help it. What I can help is that I make the day fun for them, that I keep my dark thoughts to myself. I don’t want to spoil their day.

A day that is full of joy for me is the day we brought our babies home. We waited 91 days with Jay. 91. And with M, it was 59, which comes to an even 150 days. We traveled more than an hour roundtrip through downtown traffic more than 150 times just to see our baby. More than 150 times, we walked out the hospital doors without our baby. For more than 150 days, my husband tried to balance a demanding job with the stress of having his baby in a hospital. For more than 150 days, my job was to watch over our hospitalized baby. And I still stressed over everything I missed when I had to go home.

Can I put words to the feeling of walking out of the hospital with our babies? With J, it was such a long-time coming, so hard-fought, the pinnacle of an arduous mountain climb. With M, it was so hurried, a rush in the dark of night, such an exciting surprise.

Nope, that’s the best I can do. All the words I know do nothing to touch the rush of emotions I felt actually pulling away from the hospital with our babies.

So, for me Homecoming Day is lovely. I see it in the faces of people who don’t have NICU babies. They don’t really understand what it means to me. It is untarnished by fear. It is a lovely day to celebrate all that is good about having babies. It is a true celebration, not just of the beginning of a life but of the resilience of a little body who defeated the odds.

Our Homecoming Days fall in October and March. Great months to celebrate. It’s just that in my initial planning, I got the celebration wrong. I thought we’d have birthdays then, and I had never heard of Homecoming Day.

Homecoming Day will be our own special family tradition. I’ve decided it’s another way to honor my kids, another way for us to celebrate all that is wonderful about preemies. When there is so much darkness surrounding their birth stories, I want them to see the light too.

And it begins with M in March.

Happy Day, Sunshine!

I am so glad for today.

The last few days my mind has been replaying all the events that led to M’s early birth. But, today is M’s day. Today, I woke up happy. Today, it doesn’t really matter how M got here but just that we have her.

Before we had to take M out of Mother’s Morning Out, the teachers called her their Ray of Sunshine, and they agreed to each take turns holding her because she made them so happy.

We feel that way too. J is kind, but he’s not overly affectionate with anyone other than M. She is irresistible, squishable, and squeezable; we all dote on her. She’s exuberant, both in her happiness and in her irritation.

She squeals and squawks. She grunts like a little piggy. She’s always making some noise. Or kicking. She is in constant motion, unless she’s asleep. M just learned to army crawl across the floor, dragging her right leg behind her. It’s not graceful at all, but it gets her where she needs to go, which is apparently everywhere. She’s a quick learner. I watched her, in less than 10 seconds, figure out how to open a cabinet door and let it slam to make noise. In just a few minutes, we taught her to wave, and a few days later she’d added “Hey!” to it. (I think it’s telling about her personality that hey is her first word.) I swear she said, “Ball!” today, as one rolled past her. It’s like once she’s made her mind up to try something, nothing will stop her, and I see that as an awesome trait–unless she’s made her mind up to pull on the Christmas tree or put pieces of grass from the floor in her mouth or yank a bowl full of cereal off the table. I feel like she will give me so much joy and many gray hairs, but hopefully much more joy than gray hairs.

M does not see obstacles.

She’s so determined…

She just keeps going until she gets where she wants wants!

She and J are polar opposites, and I love it. She is the warmth to his reserve; he is the regulator to her exuberance. She is willing to try anything, when he’s hesitant to do anything new. She has no fear–throw her higher, flip her over, toss her around, and the louder she laughs. J has plenty of fear for the both of them. J is careful, thoughtful, and precise. I always thought he would slow her down until a friend pointed out that she might convince him to do all sorts of crazy things. What I love most are all the things both kids share. They are both so bright and so full of life and so energetic. They will keep me on my toes, that is for sure.

So, on M’s special day, I am so glad we have her. I love that today is her day, and I celebrate what a unique, special, priceless, adorable, fun child she is. She lights us all up. She is definitely our ray of sunshine.

Happy 1st Birthday, M!

The Dark Days

This is terrible to say, but it is my truth: I cannot wait until M’s first birthday is over.

Do other preemie parents understand what I mean?

It’s lurking, even when I’m busy with holiday meals, family activities, and cleaning up after two little kids. There it is. A sinking, sad, dark feeling.

One year ago today, I was on vacation in Texas with family. One year ago today, I was blissfully unaware at how our lives would be upended. Again. One year ago today, I was touching my belly when no one was watching. I kept my hand near my daughter, loving every second of my time with her. One year ago today, I still had no idea that her growth had plummeted from the 30th percentile to the 17th to the 5th. I had no idea my body was starving her. One year ago today, my husband and I were still optimistic. We still had a chance for a full-term birth. One year ago today, I still answered the question of whether M would be our last baby with a casual, “We’ll see how this one goes,” even though I’d already decided I wanted another one. And one year ago today, I was still clueless that so many decisions about my family, about my body, and about my future had already been made for me.

On most days, I sweep it under the emotional rug, because we are so fortunate. But, today I will admit it: I am in mourning for the youth and naivety this journey has stolen from me, I am in mourning for the traumatic way I had my babies, and I am in mourning that every time I look at those two joyful beings, I know I cannot create another one. I am in mourning that my husband will never feel a baby kick in my belly, I am mourning that we will never have a baby shower, and I am in mourning that so many of the best memories of our children’s early years are so intertwined with the worst memories.

These are the dark days, the hard days, the sad days.

And the thing that makes me the saddest is that they come just before M’s birthday, that I cannot separate her spectacular existence with the spectacular disintegration of my pregnancy.

But, because M is my second preemie, I know that this darkness will pass. Once the year mark is behind me, I’ll pick up steam. Things will get easier. Life will get brighter. We will travel farther and farther from the hospitals, the stress, the hardest of hard days.

It’s just the first anniversary that always gets me.

Haunted at Christmas

We have been celebrating Christmas for the last two weeks with our family scattered around the region. No matter how much fun we’re having, it’s never far from my mind what we were doing last Christmas. I was sleeping propped up, because I’d never been 7 months pregnant before and I thought nothing of being so uncomfortable that I couldn’t sleep flat. (This is the same line of thinking that allowed me only to notice I was having contractions with J once they were five minutes apart. Either I have a high pain tolerance or a high denial threshold…)

I was feeling bloated and tired last Christmas, but I was loving my big belly. I reveled in being pregnant, because, after all, everything was going well. There were no signs of early labor at my weekly high-risk appointments. Of course, no one was taking my blood pressure or checking for protein in my urine, both of which would have signaled the coming storm.

Instead, Christmas was a quiet day spent with family. J loved opening presents. My parents and sister were staying with us. It was a happy time. It was just a few days after Christmas that everything started falling apart.

I was a basket case in the month around J’s first birthday. So much pain came to the surface, along with a crippling gratefulness. I almost couldn’t get past what had happened and what could have happened. How were we so lucky? J was so tiny, so fragile, so delicate. He was born at a cutoff. Had he been any earlier, such a healthy toddler would have been impossible. And for him to come home without oxygen, for his heart condition to prove to be insignificant, for his whole body to overcome the start my body gave him. Miraculous.

M’s health wasn’t quite so desperate, but I was so sick. My body turned on us both. I had stroke-level blood pressure, blood blasting through my veins. My organs were beginning to fail me, and fluid so inundated my abdomen that breathing was painful.

For the last few weeks, my mind has been going back there. I feel the pain. I feel the fear. First birthdays with preemies aren’t just about the joy of having a baby; they’re about suffering too, the baby’s suffering and yours. I was so burdened with emotion with J that I could hardly appreciate the joy of the day. His second birthday was much more joyous. I thought maybe it was because J was my first baby and my tiny preemie, but I feel it all coming back again with M. It’s a beautiful time of year, and I am happy. But, I’m also a little haunted too. And history tells me it probably won’t subside until after M’s birthday.