10 | The day that changed everything

On the 10th anniversary of my son's terminal, life-limiting diagnosis in utero.

There, that ache. It’s familiar.

I sense it in my bones. The way my muscles move in slow motion, the way the fog settles in around my eyebrows. The almost-yawn that lingers, never to start, never to be fulfilled. Tears, not far from the surface, carrying a heavy weight. I cannot decide if it’s worth it to have them fall.

Willing them to both come and stay I pause for a minute. Deep breath in, deep breath out.

What do I notice?

I hear two birds chirp. A car passes by. The hum of the air conditioner rolls outside my window. The faded smell of freshly cut grass gently dances just beneath my nose, lingering on my shirt from the day’s weeding. There’s too much visual stimulation from the grief clutter so I close my eyes to clear it instead of opening them to take in what surrounds. For a moment I’m transported to quiet, to stillness.

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Scene 1. I tell my aunts and uncles I’m pregnant. They’re excited. They ask me how I’m doing. My aunt tells me that the only thing that got her through her early days of one of her pregnancies was a Coke. Same.

Scene 2. I pose for a bump picture along the wall where our dresser stood in our first apartment. I smile. My pants are not buttoning as easily, if at all. I secretly celebrate this milestone. I’m only 14 weeks, but I’m desperate for the world to see that I’m pregnant.

Scene 3. Quickly on the front porch I pose one more time. Black tank top. Maternity shorts. I’m showing.

Scene 4. We’re driving home. I sit next to him, in silence. A quiet sob spills out. Grey buildings to our left, interstate on the right, just beyond the fence. I look at him, squeeze my eyes shut. This must be a dream. “I’m so sorry...” “Me too.” Some moments pass. “Do you want Chipotle?”

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Sometimes the memories scroll through in numbers.

27 [years old]

16 [weeks pregnant]

5 [days from phone call to ultrasound]

7 [hours he lived]

Long, slow pauses of flashbacks follow. The kitchen where my mom and I unpack spices from a giant moving box. The WhichWich sandwich I shared with my cousin. The yellow t-shirt I was wearing when I got the call.

10 [years]

10 years.

As the number bounces around in my mind I reflexively slump, physically giving space for my body to grieve the ache of that milestone.

“We’re seeing some problems.”

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There’s quite literally nothing that can prepare you to receive an unwanted and terminal diagnosis for your child. And yet, in the rear view mirror I see every step leading me to that diagnosis, seeing it through the lens that only a decade of experience, hindsight, memories, and trauma therapy can give.

My once-lived experience now resembles more a faded photograph than the real time color through which I saw it all. It’s both more vibrant in some places and grey and dim in others.

The sentences I hear myself saying, now align into one story. “For better and for worse, in sickness and in health.” “We’re having a baby!” “And… if he does get to live that long… will I get to feel him kick?”

I ache for that girl, right then.

She had no idea what was coming.

In some ways, she still doesn’t.

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I sit in my office and in tears I tell my friend his story — part of it, anyway.

It’s the same story I always tell. The only one I can.

She hasn’t heard it yet, and I’m suddenly dropping her into a moment of my own pain and grief.

I am embarrassed. Raw. The sudden release of emotions is too much. She wasn’t expecting this.

To be fair, I wasn’t either.

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Just do the next thing. Words I’ve lived by in grief, words passed on to me that I’ve passed on to hundreds of others. Words I’m living right now like muscle memory as the fog of grief hangs heavy over me again.

It’s been ten years since we received Jacob’s diagnosis¹. Ten years since the moment that marked my before and my after.

August isn’t always this hard.

But this year it is.

While tragic and tender and holy and beautifully, horrifically sad, ten years is worth honoring.

It’s worth honoring my grief, honoring what has happened since then, honoring who I’ve become and the work and the fight and the light that has brought me here, dim as it once seemed.

It’s worth honoring my son.

So, I look back. I look back on August 26, 2015, our diagnosis day, and I weep. I weep over all that happened, all that is still unhealed, all of the pain that is still so deep. I weep for Jacob, for how he isn’t here at home, for how I can’t picture him at the age he’d be now. I weep for me.

And I also look back with hope.

I remember the ways in which I was never alone. I nestle in to the comfort that I am seen. I validate the dignity of life and the love that overflowed just because he’s mine. I acknowledge that in sorrow there is still joy and in grief there is still beauty.

And I say his name out loud.

In remembering my son, I honor him. I claim life over death, hope in the darkest night, and the beauty of presence and of love.

I take heart in that familiar ache reminding me of the saying: grief is love with nowhere to go.

Ten years closer, sweet boy.

You changed everything.

1. Over the years, I’ve shared Jacob’s story publicly in a variety of ways. My writing has moved around from place to place in the online world but it currently lives only with me. I thought it might be fitting to reshare his story over the next few months. I’ve reposted my first post, from the archives, where I began sharing Jacob’s story here.

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