by Stefanie Boyce

Editor’s note: In 2009, Stefanie and her husband got the news no parent wants to hear. Not one, but two of their children were diagnosed with a rare, genetic disorder, Sanfilippo Syndrome. Children progress until about the age of three, then slowly lose the ability to walk, talk, feed themselves, and eventually pass away. There is no treatment. No cure. In November of 2017, Jayden (11) went home to be with the Lord and just eight months later, their daughter, Brooklyn (9) did too. 

I just want to be with you, B.

I can’t believe you’re gone. It’s a wave of panic that comes over me every time I let myself go there. There, to the place of full acknowledgement, painfully aware and present to your physical absence. You were the heavy in my arms, but now, they are heavier with you not in them. 

I am trying, B.

Trying to take one grace-filled step after the other. I am making my bed and trying not to crawl back in it. I am showing up and want to hide, all in the same moment. When you are newly bereaved, again, even simple things are hard.  

First, your brother. Then eight months later, you. I keep telling people it’s like finally being shot after knowing I was a target, then starting the rehabilitation process in a hospital, only to be shot again as I was relearning how to walk. I wasn’t even discharged and sent home. 

Days are like walking through mud. Even turning the corners of my mouth up to a smile feels heavier, like weights are attached to the corners. 

Life is heavier without you.

I thought about these days, even craving them a bit, if I’m really honest. Craving the break from a decade of caregiving. It was so heavy-heavy and holy- but not nearly as heavy as grief. I realize I just wanted a break, not you gone. I wanted to hit pause, not stop. I just want you back, and I am sorry for ever wanting a moment away. Because now, I’d give anything to have you play with my fingers or sing you a song. I miss the weight of you nested in my lap. If I stay in this place too long, I can barely breathe. But I refuse to get trapped in regrets, because I know no matter how much I had of you, it would never be enough.  

The house feels empty. Even the silence that once brought comfort in the chaos is now in need of redemption.

Did I mention, I can’t believe you’re gone?

I changed your bed. Did you see?

A twin mattress that doesn’t need sides anymore.

You can’t get hurt anymore.

A big girl bed.

A nine year old bed.

Your sister thinks your room is her office because I turned your playroom into mine. We keep the dutch door of the playroom open now, because you’re not here.

Because I don’t need to keep you safe anymore.

You are eternally safe.

I painted the walls white. Nothing remained white when you were here. Do you remember all of the dents you and your brother made in the walls? Hundreds. Every one that my finger felt this week served as a reminder of where you were, that you are there no longer.

Painful and peaceful, I need reminders that remain.

The “distressed” window trim, full of toy hammer dings and a few bite marks-now an altar. I kept the mysterious blue blotch on the ceiling from some ball- a reminder to look up. A reminder where to find you.

I need the reminder that nothing is perfect, not even a white room, and plan B is where I am meant to stay.

My desk is the table that held your urn at the funeral.

The same table your brother’s urn sat on only a few months ago.

I can’t believe he is gone.

Last year, today, you both were here.

You both got off the bus.

Just. Last. Year.

But the desk? Writing on it is my way of trading ashes for beauty, a small act of redeeming even the darkest of things.

Every decision to change a space or leave it, is hard.

Every space an invitation to remember, to move forward with you.

Environments matter desperately to the grieving, leftovers from a love that continues to satisfy.

I chose white walls because, to me, white is sacred. Holy. Light. All the things you point me towards. I was going to put chairs in the room for people to talk but decided against it. We will continue to gather on the floor like you taught.

“Get low, mom,” I hear you still inviting us.

“Never forget you must begin there each day.”

I knew it was too painful to see the room lifeless so I decided whatever came out of it had to honor the beauty that has already taken place in it. Words and life, tears and laughter, full of you and your brother and everything God continues to teach me.

Share.

Share.

Share.

So I will. My simple, tear-soaked offering to the world, full of light and love.

Keep teaching, Brooklyn.

I am learning.

Learning it all for the very first time, again.

I can’t believe you’re gone.

Cover photo by Mike Labrum on Unsplash.

Stefanie’s piece first appeared here.