Endings

Dear Nora,

There have been so many moments that have felt as though they should have been endings in your story. Times when it seemed appropriate for the narrator to softly say, “The End” as the picture slowly fades to black and everyone is content to walk away, not thinking twice about what comes next. Though each of these moments has reminded me that there is no slow fade, no last curtain and no walking away. Instead of being content and not wondering what comes next, we have to live it. We have to live without you. Your birth alone felt like it was supposed to be some sort of ending. An ending where we had always wanted a beginning. I suppose we got both at once, just in a different way than we had expected.

As time goes on, you will become more of a memory to others. An occasional thought perhaps or a conversation piece, “Did you know they had another baby?” But for us, you are our story. Your memory, your light, it lives on each day in our hearts. We will carry you forever. It’s a beautiful thing to know, but that doesn’t make it easy. It is a very difficult thing to do, to carry on past these endings and into whatever the future brings, carrying the spots in us that you simultaneously filled and left empty. I think with time the loss and pain we feel will become more bearable. Empty will start to feel more bright than dark. I look forward to those days, but in all honesty I’m grateful for the pain and sorrow. I know that sounds ridiculous and counterintuitive, but those things are a reminder of just how much and how fiercely I love you. They’re a reminder that you were here. You are a part of my life now and will always continue to be.

As for today, we faced another moment that feels like it should have been an ending to this beautiful story of yours. The story that will never actually end. We escaped to the beach for a few days to spend some time together as a family before your dad goes back to work and we brought you with us. From the moment we decided to pursue comfort care for you, we knew we couldn’t bury you. We couldn’t bear the thought of leaving you somewhere in the ground and having to move away. We never wanted you to be alone. We also knew we couldn’t keep you in some beautifully made urn somewhere, packed and unpacked every time we moved. You shouldn’t be placed on a shelf somewhere in each new home and left to collect dust until cleaning day. That just wasn’t right. None of that felt right. Much like how you deserved a life free of pain and filled with love, you deserved to be free among the world.

We talked of the ocean a lot while I carried you around safely in my belly. We wanted to bring you there if we got to bring you home. “Everyone should dip their toes into the ocean and feel the sand on their feet.” I remember saying. We even toyed with bringing a bottle of water from the sound to your induction so we would have it there just in case. I decided against this, fearing we’d be dipping your feet into old, smelly, lukewarm water and that didn’t sound like the experience I’d been imagining. We’d also had to prepare ourselves for truly letting you go and so we’d discussed spreading your ashes into the ocean. The waters of the ocean connect the entire world and it could be yours to explore. A way for you to see all the beauty the world offers. A way to see everything you hadn’t been afforded the chance to see in life.

So today we packed up the car and drove the short distance from our cabin to the beach. We even brought Barnum so it was truly a family affair. After we parked the car right on the sand, we bundled up against the wind, and walked together towards the crashing waves. We went as the tide was receding to be sure you’d be swept away and sent on to your first adventure. I read a poem as the water lapped at our feet and we prepared to spread your ashes among the waves. We each helped send a little bit of you out into the world, your dad walking calf deep into the water, ignoring the cold. Then your dad and I held onto each other as we listened to your beautifully perfect song and cried, watching as the waves carried you away. As we shared that moment together your sisters played quietly behind us. After a few minutes of silence, we all blew you a kiss, I whispered “I love you” and we turned to go back to the car.

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It felt like the beach should fade away and we should move forward contentedly, but instead we were left with the same holes in our hearts and had to press forward anyway. “What do you want to do now?” I asked “I guess we should go get lunch.” your dad replied. He was right, your sister would soon be restless and we must keep moving forward content or not. So we chased each other and played on our way back to the car where we piled in before driving away from that moment that felt like it should’ve been an end. A single, small white butterfly floated by, seemingly in slow motion as we curved down the road and an eagle circled us overhead. With that I knew that even though I’m still heartbroken that you aren’t here, you truly will be with us forever and letting you go into the ocean was only the second hardest thing I’ve had to do. Now not only will I think of you with each star in a dark night sky, but also with the sound of crashing waves. Peaceful and free.

Love, Mommy

Originally written to Nora on May 4th, 2021

The poem I read aloud before we spread Nora’s ashes is one that we found through another family who chose comfort care for their baby with HLHS. Even though we are not extremely religious, we felt its words deeply, so it seemed the perfect time to read it aloud. Here are the words I read to her-

“I’ll lend you for little a while a child of mine,” God said.
“For you to love the while she lives and mourn for when she’s dead.
It may be six or seven years, or twenty-two or three,
But will you, till I call her back, take care of her for me?
She’ll bring her charms to gladden you, and should her stay be brief,
You’ll have her lovely memories as solace for your grief.”

“I cannot promise she will stay; since all from earth return,
But there are lessons taught down there I want this child to learn.
I’ve looked the wide world over in My search for teachers true
And from the throngs that crowd life’s lanes, I have chosen you.
Now will you give her all your love, not think the labor vain,
Nor hate Me when I come to call this lent child back again?”

“I fancied that I heard them say, ‘Dear Lord, Thy will be done!
For all the joy Thy child shall bring, the risk of grief we run.
We’ll shelter her with tenderness, we’ll love her while we may,
And just for having loved her, forever grateful stay;
But should the angels call for her much sooner than we planned,
We’ll brave the bitter grief that comes and try to understand!'”

-Adapted from a poem by Edgar Guest