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Zoë’s Day

She was exactly 21 days old, four years ago today.

Had she been born on THIS day four years ago, she would probably still be here.

Sweet Zoë Harper.

Your little sister doesn’t quite understand why I keep scooping her up for hugs and burying my face in her neck today. She’s humoring me with lots of drooly “mwahs” and she didn’t mind sitting in the rocking chair for an hour while I smelled the almond soap in her hair. We looked at the photo of your name in the sand that hangs on her bedroom wall. We played on the playground and had snack. We did all the things you and I never got to do.

Even though you aren’t here, you are always with us.

We miss you.

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I had to count to figure that out. I no longer carry this running tabulation of how long it’s been, just like I no longer carry a running count of how many weeks adjusted and chronological Olivia Moonpie is.

Where am I?

I remember when Glow in the Woods started up and the metaphor just clicked with me. I was so lost in this big, dark, scary woods and I had no idea which direction was the right one. I just kept putting one foot in front of another hoping and trusting that there had to be an end somewhere. It was perfect. I’ve been lost in woods before, literally. I have crawled on my hands and knees through a tangle of wild rhododendron so thick I couldn’t stand up and I couldn’t see more than a few feet ahead. The branches grabbed at my hair and my clothes, the roots tangled up my boots and hurt the palms of my hands. I had to just keep going, hoping it thinned out sooner rather than later. And that is exactly how my grief felt. It snagged and pulled and scratched. It was a million little papercuts that left me feeling thin and fragile and ready to shatter. There would be moments when I’d think I’d reached a clearing only to find myself plunged back into it by the most inane things.

One step at a time. Keep yourself busy. Go through the motions of life, whether you want to or not, whether you really feel it or not. Then one day you wake up and realize you are just living again.

Writing helped. Saying their names helped. It wasn’t easy. Just weeks after Zoë died, I had to call the IRS to figure out how to handle them on our taxes. That poor woman who had no idea what she was in for when she took that call from the queue sat with me until I could talk and waited until I could breathe again. Their names, Lennox and Zoë, caught in my throat more times than I can remember. Having to explain to various medical people how many times I’d been pregnant, how many children I had. “No, they were born alive. Lennox lived almost three days. Zoë lived three weeks.” I said that over and over. I know it was always more information than they needed, but I needed to say it, needed to have their short lives detailed, needed to let the world know that they were HERE. And like stones in a river, the sharp points are slowly wearing away. I find that I can talk about them, at least briefly without hearing that….thickness in my voice. You know what I mean, that sound that means the tears aren’t far behind.

It still gets me. Even now, I’m typing more by touch than sight because the tears have steamed up my glasses too much for me to see the screen or the keyboard. Olivia Moonpie turned one this week. She’s standing up and starting to cruise. She has gone from belly crawling to crawling on her hands and knees. She says, “Mama.” She feeds herself little bits of food. She will offer to share her puffs or her teething ring with you. I watch her and wonder what it would have been like with the twins. I wouldn’t have my Moonpie. Or maybe in a more perfect world, Moonpie would be trying hard to keep up with two three year old siblings and the house would be so full of noise and fun. I wonder all the time.

Olivia Moonpie was my lamp post in the snowy woods. She was the spraypainted blaze on the tree, marking the trail. She is a giggly, wiggly, drooly, silly, spinning YOU ARE HERE dot on the map. I try not to hold her tighter than she wants me too. I try not to get too many tears on her just barely not bald head when I rock her to sleep. She has done more to heal my heart than she will ever understand. The scars haven’t faded. They are still angry and red. They may never fade but, before Olivia Moonpie got here, the scars hadn’t formed and everything was raw and open.

Zoë and Lennox taught us to take as much pleasure in the small moments as we possibly can because they are so fleeting. We learned that NOW is what matters, far more than what might be ahead or what just passed. The laundry will wait ten minutes while we watch Miss Moonpie bounce like a bronco rider in her jumperoo. A cold dinner is a perfectly acceptable trade-off for a tickle-fest on the floor. Tomorrow, next month, next year there will be something else taking the place of right now, but right now she IS and we are blessed beyond belief to be witness to it and part of it.

That is right where I am. It isn’t where I ever thought I’d be and it may not be exactly how I wanted it. It just is. I’m not brave. I’m not strong. I’m not perfect. I just never gave up on the belief that I couldn’t possibly be lost in those woods forever. The trees have thinned out some. The thorns aren’t as dense or as sharp. I can see bits of sky now. There are still rocks to trip me up and sometimes the climb is steeper than I’m used to, but I’m getting there.

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The Right Where I Am Project can be found at Still Life With Circles. It’s a fantastic project with some amazing posts by parents in all different stages of grief. Bring your kleenex (and sorry I left out the link originally!)
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Yesterday, I went to the NICU for Olivia Moonpie’s noon feeding. I’ve been working with her on breast feeding every day at lunch. She hasn’t quite gotten the hang of it yet, but we’re close.

I like being there at noon. It seems to be one of the quieter times in the NICU. I like having the option to sit and chat with the nurses while they chart or just be quiet with the Moonpie. All the babies are usually calm because one way or another, they are getting full tummies. Most parents come before or after work. It’s just one of those times when it seems less like an intensive care unit and more like a nursery.

I was holding Miss Olivia Moonpie while she got her gavage feeding after a very unsuccessful attempt to nurse. Note: A diaper change that requires five diapers will wear a preemie out to the point that no amount of being hungry will make them suck on a breast. She was sleepy and full, I was happy holding her.

Then the nurse told me about what their afternoon held. It would seem that earlier this week, a 24-week preemie was born there and briefly admitted to their NICU until he could be air-lifted to the nearest level four NICU (that would be the one that Lennox and Zoë were born in). His mother remained at our current hospital. Unfortunately, the little one was not strong enough and was not going to make it. He was being kept on life support so he could be brought back to his mother to say goodbye.

I hugged Olivia Moonpie, kissed her head, dressed her back in her warm pajamas and tucked her in bed. As I walked out to my car, I passed by the ambulance from the children’s hospital.

Since then, I haven’t been able to stop thinking about that mother. I remember holding Lennox after they stopped trying to treat his last pneumothorax. They gave him morphine for his pain, unhooked all of his monitors and iv tubes and respirator and brought him to us to hold. He was a day younger than the little boy who died yesterday. There are so many things I’d like to tell that mother. She needs to know that it’s ok to scream and cry and just be miserable. She needs to know that the awful, horrible thoughts she has sometimes are ok, too. She should know that the nightmares may come, but that eventually they stop coming as often. I wish she could know how sorry I am and how much I wish she didn’t have to find her way through this deep, dark forest. I wish I could just sit in a dim room and hold her hand and let her know she isn’t alone. If I thought it would help, if I thought she would welcome it, I’d put Olivia in her arms and say, “It isn’t easy. It isn’t quick. It isn’t fair. But, it can and will get better over time. Believe me, I know.”

I have thought about asking the nurse to give her my card and tell her my story. I’d like her to know there is someone who has been there and who won’t judge anything she thinks, feels, or says because I’ve already done all of that. It’s like the “Each one, teach one” approach to grief.

These weeks in the NICU with Olivia Moonpie have been hard. Even though it is a different hospital and a different situation, we are surrounded by memory triggers. From the smell of the alcohol gel, to the sound of a CPAP, to the chime of a bed temperature alarm, to the hypnotic wave forms on the monitor that you watch obsessively and will to stay where they are supposed to. The little things overwhelm me. Watching her drink from a bottle can dredge up all of the thoughts of things that Lennox and Zoë never got to do. I smell Olivia Moonpie’s head and she smells like baby…milk and Desitin and Johnson’s baby shampoo. Lennox smelled of iodine and blood. Zoë … I don’t remember what she smelled like.

You struggle with the grief over what should have been and then realize if it HAD been, you wouldn’t have THIS. And you wish, just this once, that you could have had it all.

Mama, I don’t know your name. I won’t see you sitting by a bed in the NICU. I did see your lovely son being brought in, minutes after he was born. I just want you to know, whoever you are, that I remember with you.

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Dear universe,

You win. You’ve beaten me down. I surrender.

It’s been four years since I took that first clomid. I was cautiously optimistic then. I tried to hold on to that at each step…diagnosis of PCOS, discovery that my cervix was blocked with scar tissue, a screw-up with the endocrinology lab the day we were freezing a sample for our IVF, the need for ICSI…

Each time a cycle failed, there were no answers. Each time, I heard over and over about how wonderfully I responded to the protocols, how textbook perfect the embryos were. How well the twins were growing. How amazingly Zoe was defying all the odds of being a micro-preemie.

I lost my optimism right about then, but I tried to hold on to some hope. A high beta, rising just as it should. Bleeding. A perfect in vitro cycle with 11 high quality embryos. No heartbeat. At least this time, we had something to test, a way to see if there was a reason for this.

You, dear Universe, are a bastard. All I want is some explanation and instead, what do I get?

I finally called the clinic since it’s been about 6 weeks and I haven’t heard anything. Turns out, the lab couldn’t DO the chromosomal testing because there wasn’t enough tissue to test. I don’t know when the clinic received those results, because I was too angry to ask, but I did demand to know why no one bothered to call to tell me. My doctor is on vacation until next week, but the nurse I spoke to said she was sending her an email as soon as she got off the phone and Dr. N should contact me when she’s back in the office.

So, I have no answer. And the only reason I have no answer is because there wasn’t enough tissue to work with. It’s like it was dangled in front of me, teasing me like the way we dangle the toy mouse in front of the cat only to twitch it away as she lunges for it.

How am I supposed to make any sort of decision when I don’t have an answer?

So, you win. You have reduced me to this pile of brokenness. I’m frozen in place. I don’t know the right path to take anymore and I don’t know which scares me more…trying again and losing another one or stopping altogether. I hope you are happy now.

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Lennox Day

Today is Lennox’s day. He shares his birthday. Today is his very own day. Zoe will have her own day in three weeks.

Today is the day I remember my very tiny, very sick son.

I didn’t get to see him until he was already a day old. I held him for the first time as he fell asleep for the last time.

Today is Lennox’s day.

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Birthday

Dear Lennox and Zoë,

You were born a year ago, today.

I miss you so very much. I think of you both every day.

I wish we were having a party today with chocolate cake and balloons. I wish, I wish, I wish.

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709

Not much else to say.

I hate Christmas.

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