All day, I’ve thought about what I would write. One year ago, I lived through every parents’ worst nightmare. I’m still alive. He still isn’t. I’ve been reliving those days, sifting through the big box under my bed. It’s full of cards and trinkets and mementos of his life.   I’ve been watching videos of him and looking at pictures.

The strangest questions have come to mind. Who put our children to bed the night he died? I don’t remember. Did I sleep through the night or did I wake and stare at him, there in his crib next to us? Who put away our Christmas tree? I don’t remember it being there, the morning we woke up for his visitation, but neither do I remember putting it away. It was there on New Year’s Eve, as I can see it in the pictures. Did I eat anything that night? Did Jim? What time did I wake up that next morning? Did I remember when I woke up that he was dead, or did I already know?

This first year has passed in a blur of time. I’ve tried to honor my son, and I’ve tried to honor my grief. Lately though, I feel as if I’ve been hiding from it more and more. Submerging myself in activity, sometimes mindless and frantic. When I do this, I find my grief coming out in unexpected ways – in whiplashes of emotion towards strangers, towards my children, and towards Jim. In this year, I’ve learned that grief will not be ignored. Grief must be felt, must be experienced, and must be lived through. There’s no “keeping busy” until it goes away. True grief never goes away.

As a culture, we don’t want to make room for the hard feelings. We want to believe that life is mostly happy with moments of sadness. Instead, James has shown me that love and grief are two sides of the same coin. Grief is woven into the tapestry of our lives. We will all love, and we will all lose, and we will all grieve. Someone told me something very wise – a mantra for each day, if you will. “Life is hard, but not today.” Except today, today is hard. But it’s not quite as hard as one year ago.

Lately, I’ve been thinking about our decisions for James – the decision to have the tracheostomy, that we didn’t pursue heart surgery as he grew stronger and bigger, of all the little things that we had to decide on a daily basis. It occurred to me that I’ve only really considered that we made a mistake. I haven’t really allowed myself to consider that there was no mistake to be made, that we could only make a decision for him out of love and care. I have to remind myself that he wasn’t just cruising along and doing great before we took him off the ventilator. He was oxygen dependent. He was fed through a tube. He was on 13 medications just to keep his heart from failing. His heart needed major surgical repair that he might or might not have survived. It could go either way.


For us, it was worth it – the sleepless nights, the endless alarms, the constant low grade terror of losing him. We would have kept him with us forever. But for him…well, we couldn’t ask him. So we did the best we could. And we loved him. We love him still. We will love him for always.

When my cousin drowned at just shy of 2 years of age, I remember telling my grandfather that in his short life, my cousin knew more love than many children ever experience. Some children live short, brutal lives of neglect and abuse and never know a mother’s loving embrace. My cousin was loved. He is still loved. James was loved, and he will always be loved. The quantity of his life paled in comparison to the quality of his five months.


I think, someday, that I will be able to be really believe that we did our best and that we didn’t fail him. I’m not there yet, but I’m starting to think that I could be. I’ve allowed myself to think of names for this baby. I still fear trying to live with the wild love for a newborn nestled against the bleeding of my broken heart and my yearning for James. In fact, I’m terrified. How does one grieve like this and parent a newborn? I can barely parent the children I already have at the moment, truth be told. But that is a thought for another day.

I’ve been trying to think of how to sum up James’s life -how I remember him and his time here. Today, my best friend sent me a gift. She captured so perfectly my son’s essence. She titled it “Opening.” I see the burning of the rocket, leaving earth, reaching towards the sky, straining, the quaking and tremoring, the shock of the ride – all noise and commotion and wild exhilaration, and then, bursting through the opening into the perfect silence of space, entering into that holy vacuum. Where we all arise, and where we will all return. That was my son’s life.


2 thoughts on ““Opening”

  1. Your words have given me words to the grief I’ve felt this past year. Thank you for your honesty. I’ve sobbed reading your posts and I’m grateful you’re sharing your story. Love to you.


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