I could feel the pressure, my skin becoming tight, my breath shallow and cold, the room too full of her memory. And I would go, from corner to corner, wall to wall, choosing, oh so carefully, the pictures to be put away. I nestled them in drawers between spare candle holders, foreign coins, old crayons and the like, possibly useful objects that will someday be stored in the attic.

I would never send them straight to “storage” without having them rest in the holding place first, the place that gives me the illusion of possibility, and with that, accessibility. She doesn’t belong in the attic.

It feels more comforting to know she is still part of the everyday, and if not, then at least the occasional. Eight years later, many of her pictures are still on display with those of her siblings. She is no longer the oldest child, now passed in time by her sister. And between her two siblings, she snuggles as the “baby” indefinitely.

The photographic birth order, now overshadowed by life, gives a false representation of fact…our family tree.Yet, frame by frame, our lives continue. Sped up, they could actually be a movie. But if slowed down, a keen eye detects the interruption, the occasional hesitation in moving forward, the glance back, and the searching for what’s lost.

We…I…am determined to deal with what is. And I do. Yet, there is static, a low hum behind the first layer, barely audible yet always present. The flicks of history in our hair, our eyes, within each breath we take.

Yes, we will always remember. She is part of us, of our history, and our future. In the present, I cannot face the grief head on, the air stops in my throat, and the pit in my stomach grows. Maybe in time, I can settle into the loss, but for now it can only exist behind and in front — just not now, not in this moment.

As we navigate these waters of grief, I realize more and more how individualized it is. It is a shared sorrow, and yet, somehow not shared at all. My removing pictures had a profound effect on my partner Nancy. She didn’t feel at all comfortable with taking any of Madison’s pictures down.

I told her over the phone that I was putting a few away. Her immediate re- response: “Which ones…that’s my favorite… let’s just leave them all up.”

What felt better for me, felt worse for Nancy, and visa versa. So over the years, we slowly developed a strategy. Nancy keeps all of the pictures she loves at her office where she can see them almost every day. And I have put more and more of the pictures in drawers.

Nancy will fish a couple out now and again as she needs to, putting them back on the wall where they were. And so it goes. There was no big long process about it; we just found our rhythm through respect for each other’s needs and wishes.

We have never once fought about the way in which we grieve for Maddy. During the first few years, our grief was very separate, coming together only on days that marked her birth or passing. Most of the time, we had to go it alone, plotting our own course without a map, and at times, without even a rudder.

Memories are what we have left, put in their various categories of initial diagnosis, treatment, post treatment, and death. But within that, we had a whole other thing going on: LIFE. The choices we made, the community we built, the imprint of our daughter’s life on everyone’s heart.

I can take down some photographs and know that everything I have, everything I am, is a direct reflection of that little soul. She continues to live within me, within our children, and within the love Nancy and I have for each other. So I give myself the space to accept where we are as a couple, as individuals, and as parents — knowing that what makes life both beautiful and tragic…is the mystery?

Lisa Buell 2011

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Lisa Buell

Lisa Buell

Lisa Buell is a writer, activist, mother of three and parent of two. She works with Children’s Hospice and Palliative Care Coalition, Partnership for Parents, as a parent advocate bringing a parent’s perspective to the development of palliative care programs and policies. A published author, Lisa is writing her first book, entitled “Call Button,” a collection of essays about the continuation of life in the face of treatment, navigating the waters of grief, celebrating communities and the clinicians who care.

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