1,249 days

Four years ago, on December 26th, I was nearly ten weeks pregnant. Jodi and I were going for an ultrasound, though, to confirm this tenuous piece of news because my doctor was concerned the baby might not be developing. It was a day of such uncertainty, the greatest terror I had felt since the day of my miscarriage a few months prior, and before that since the death of my son. However, within moments of the ultrasound tech placing a blob of warm gel on my belly and moving the transducer around, there on the screen was a little peanut-shaped blob with an unmistakable flickering heartbeat. My eyes poured tears, and relief transformed those tears into laughter, into hope.

Today, that little blob with the flickering heart is my vibrant daughter. Yesterday, on December 26th, my daughter turned three years and five months old. Three years, five months. That amounts to 1,249 days I have spent with this wondrous child—exactly the same number of days I spent with her brother. And today, today I have a child who has been on this earth for 1,250 days, and that I have never known before.

Before my daughter was born, Jodi and I took on the task of finding a new pediatrician. It was important to us both to find someone who understood what we had gone through, who would pay extra attention to our daughter. Just in case. The doctor we found had been in medicine for decades. He was sharp. He was warm. And he had known too many bereaved parents. I remember the wisdom he shared that day as we sat in his office as my daughter rolled around in my belly. He told us it would be hard those first few years, that we would probably overreact, that we would probably be hyper-vigilant—that he would be too. And he said that when our daughter grew to be the age Caemon was when he died, it would start to get better. He had seen it time and again. One day, these two bereaved mothers would relax into parenting what he predicted and hoped would be a healthy child.

And here we are. We have reached what he called “that magical age.” My daughter is now older than her big brother ever was, ever will be. She is healthy. She is wildly articulate. She is moody and energetic and willful and spirited and empathetic and curious and funny and wise, so wise. She is so much of her brother and she is so much just her.

I have watched her these months as she entered three. I didn’t know what it meant to have a three-year-old out of the hospital, a three-year-old without leukemia, a three-year-old without chemo and pain meds and steroids and all of the hardships that came along with that life with my boy.

As it turns out, it’s not that different in many ways. She has strong opinions, big feelings. She tells me regularly that her name is not her own, that she isn’t anyone—the very same existential declarations that led me to find the “Croc” moniker for Caemon. I’m left wondering from time to time if maybe it wasn’t morphine that made him reject his name, that maybe it wasn’t always feeling sick that made him protest returning to his room. I am learning that three-year-olds, sick and well, crave control of their situations, need boundaries to feel safe in their worlds, require the comfort and security of their parents’ arms to navigate new feelings and experiences. Of course, it’s different parenting a child in the hospital, but there is an odd comfort in knowing that my son was kind of a normal kid in some ways—as normal as my quirky offspring can be anyway.

With this knowledge, I don’t mind hearing my daughter proclaim that not only is she not her name, but that she is also not a child, my daughter, a baby, a dinosaur, a dragon, a cat, or funny. And while her emotional meltdowns make me sad for her, I don’t panic when she loses control. I just sit on the floor, open my arms, and let her collapse into me like he did so many times. I am her home base as I was his. She fits, not exactly where he did, but similarly, perfectly.

But what is different is that she is healthy. This year has meant preschool, something Caemon never fully experienced. And with preschool has come preschool colds—seemingly one after another. She has had some fevers. She has spent days wanting nothing but to curl herself up in my arms. The difference is that so far (and you know I have to say that), she recovers without incident. Her coughs fade away. Her ears remain clear. She bounces back and shows me time and again what a healthy child’s immune system is meant to do. Every time, I marvel, and every time, I also grasp just how sick he was for so long.

IMG_7510Of course, the differences span far beyond her health as we enter these unfamiliar months while she continues to grow and develop and learn. My daughter sings “Rudolph the Red-Nosed Reindeer” and dances her own made up “dragon dance.” She is obsessed with dinosaurs and horses, and she plays with toys and (usually) not medical supplies. She stomps in puddles and dresses in costumes and loves to get messy. She is making friends who are children (without one nurse or syringe pump among them), is on her first winter break, had her first holiday performance at school. And like most little sisters, she looks up to her big brother, tries to emulate him through her interpretation of who he was. Each day of her  1,250 on this planet thus far, she has reminded me that she is her own person and always will be. There is no danger of her taking on the role of replacement child, and as each day passes, I believe I may very well see her grow up.

My son’s favorite song in his final five months was a Jack Jonson song called “Supposed to Be.” Every time it came on, he wanted me to hold him, dance him, and as I did, he listened to every word, every note so intently. The lyrics were simple:

Maybe it’s up with the stars
Maybe it’s under the sea
Maybe it’s not very far
Maybe this is how it’s supposed to be
Maybe this is how it’s supposed to be

Maybe it’s trapped in a jar
Something we’ve already seen
Maybe it’s nowhere at all
Maybe this is how it’s supposed to be
Maybe this is how it’s supposed to be

Looking forward as we rewind
Looking back is a trap sometimes
Being here is so easy to do

If you want to…

We would play this song often in the hospital, and as I held Caemon, his tubes draped across my arms, his arms wrapped around my neck, my lips resting on his sticky, bald head, I would listen carefully too, terrified that this was, indeed, how it was supposed to be.

My daughter does not want to hear this song. She does not want me to play it and begs me to stop it when it comes on. It makes her sleepy, and because of this, as she so very sternly asserts through her three-year-old logic, it is not a good song. I don’t have to play it to hear it though. All of those replays in the hospital have it indelibly loaded onto the Caemon playlist in my mind. And these days, as I observe her surpassing her brother in so many ways, as I see her three-years-and-five-months healthy and three-years-and-five-months strong, and as I miss her three-year-and-five-month-old brother, this song wafts through my head and slow dances across my heart, a bittersweet message from beyond.

Yes, maybe this is how it’s supposed to be.

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3 thoughts on “1,249 days

  1. vicnotes

    Beautiful post – each child is so wonderfully unique. As one with ten siblings, one who died before I even could know him, I am amazed at not only our similarities but our differences. Blessings on your journey…

    Reply
  2. Leslie Giambrone

    Such a beautiful song…thank you for sharing. 1,250 days old is indeed magic, and everyday now will be filled with an absolutely new experiences for all of you. I hope the smiles make your cheeks hurt.
    Leslie

    Reply

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