Mother’s Day gifts

rare-diseaseMother’s Day 2010: I watch as my mother unwraps the first of her presents. It is pair of pretty handmade slippers. She is pleased. I am anxious, though. As I watch her sweetly looking over the slippers, I try to resist the urge to push the next package toward her and demand she open it immediately.

I quite literally sit on my hands to keep myself in check.

When she finally unwraps the second package, I watch the confusion on her face as it settles into a hopeful realization. She holds up the tiny little slippers and asks, “Are you?” I smile and nod, tears welling up in my eyes, “It is really early mom, but we wanted you to know … Happy Mother’s Day!”

I am four weeks pregnant, expecting my first child, my mother’s first grandchild. I can already imagine what it will feel like, one year later, celebrating my first Mother’s Day. Mom and I will sit under the big umbrella our faces and arms in the shade, our feet in the sun. We’ll pass the baby back and forth, laughing and talking about this baby’s future. We’ll walk around mom’s gardens and admire the flowers. We’ll already be a little clan: mom, me and my baby girl — she will be a girl, I just know it.

I am right. The little tiny bundle of cells and joy growing inside me is a little girl, just as I imagined.

But, also, she is already unbelievably different than I ever could have imagined.

Mother’s Day 2011: I glance over my sleeping three-month-old daughter Esmé. I take her in completely — her full head of dark hair, her pouty lips, her dimpled hands. For a moment I swim in the calm of watching her little chest rising and falling rhythmically — in and out, in and out.

After a beat, I snap to, scanning the lines running from her, glancing over the IV, oxygen and monitors. I have the same thought I have had every morning for the last week: She made it through another night.

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Esmé in the NICU on my first Mother’s Day

It takes a moment before I realize the nurse, Mary, is holding out a Mother’s Day painting — tulips made from hand and foot prints — for me. Right, today is Sunday. It’s Mother’s Day, I think. She says, “Look what Esmé made for you!” There are traces of green paint between Esmé’s toes and pink paint on her fingertips.

Mary was part of the team that saved Esmé the week previous. Mary was there when Esmé stopped breathing, when the ambulance sped down the highway, when Esmé’s stretcher rushed down the hospital hall from the bank of elevators to the ICU. I love Mary in a way that cannot be described beyond the fact that she helped keep my daughter alive through the impossible.

The flower painting — and saving my child’s life — isn’t the only gift Mary has in mind, however. “Do you want to hold her?” She asks. I have not held my daughter since I handed her limp body over to the nurse in the emergency room. “Are you sure …” I ask, looking at the mess of wires and tubes running every inch of her body. Of course, I ache to feel the weight of her body in my arms. But I am terrified. Mary reassures me, “I spoke to the doctors, and they agree that it is OK. I’ll help you.”

Mother’s Day: Looking back

Mother’s Day 2016: I look back to that day, five years ago, holding my newborn daughter and carefully navigating the NG tube, the oxygen and the PICC line in her neck. I held her as I sat alone in the Pediatric ICU. I held her for the first time in what felt like an eternity. The cool dark room was still save for the life sounds of the medical equipment keeping her tethered to this world. Esmé slept on me, her body feeling far heavier than its ten pounds — as if all the weight of her short life was bearing down on both of us.

As Esmé rested, I considered the dreams I’d had for this day, the dreams I had for her future. They all escaped my grasp. I could no longer picture the mother and daughter moments I’d imagined stretching forward through our future. I could no longer visualize sitting in my Mother’s garden with nothing more to do than take in the flowers and relax with my baby in my arms. It seemed, after all of it, I could no longer imagine what the sun felt like on my feet.

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But, holding Esmé for the first time since I was forced to understand the challenges she faced were going to be unfamiliar and terrifying and mysterious, I started building another dream, another vision of motherhood. A dream where spending Mother’s Day with our favorite nurse is a gift. It is a dream where we’ll grow flowers to admire — even if they were painted with Esmé’s sleeping hands and feet. It is a dream where the only mother and daughter moment that matters is the one between us in the moment … a dream in which she and I will build sunlight between us when there is none.

Five years later, my daughter’s challenges are still mysterious. But they are familiar, and far, far less terrifying. This Mother’s Day my mother, Esmé and I may be able to sit in the sunshine and admire the gardens as they burst into life. Mom and I will pass Esmé back and forth as we tube-feed her. Esmé will babble in words we still don’t quite understand. We will smile at her and tell that her words are beautiful.

And, later, when she falls asleep in my arms in her darkened room, I will remember that day five years ago, when just holding her felt like the most tremendous gift in the world. I’ll feel her little chest rising and falling rhythmically — and I will whisper into her hair, “Thank you for staying with me.”

 

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About the blogger: Hillary Savoie, PhD, is the founder and director of The Cute Syndrome Foundation. Her daughter Esmé has mutations in both PCDH19 and SCN8A — which are of unknown significance. Hillary writes about life with Esmé on The Cute Syndrome Blog and is the author of two short memoirs about life with Esmé: Around And Into The Unknown and Whoosh.

Learn more about rare disease research at Boston Children’s.