The Power of These Photographs

What do these pictures have in common? Other than the obvious, I mean. Yes, they are all photographs of Keelie, my little angel. But what you can't see is the fact that these are all before pictures. All of these pictures were taken before we figured out something was wrong, before we noticed the differences, before the dreaded diagnosis. For this reason, these photographs remain treasures to me. They remind me of a carefree time when I was ignorant. They take me back to a time when I had four healthy children. They return me to a day when I considered having a fifth child. They are pictures of my daughter before I lost her.

Those of you who have physically lost a child through death may argue with my use of the word lost. But I assure you that my grief was--and is still--very real. Not long after these photos were taken, I realized that my daughter wasn't who I thought she was. When the doctors gave us the final word that she would forever be shackled to medication to control rampant seizures, that she may never learn to speak, and would never live independently, but always need daily care my vision of my daughter as I knew her died. I had to bury my hope for her future. I had to lay to rest any plans I had for her.

I went through a very real, and very relevant grief spiral. Anger, loss of hope, denial ... all of it. But what emerged from the wreckage of that spiral was a new me. When the dust settled, I was able to roll up my sleeves and get to work to reclaim a portion of the daughter I felt I once had. I read. I researched. I talked to her therapists to figure out how I could come to terms with this new child that I needed to learn to care for. I worked with her daily to teach her to respond to her name, to make eye contact, to play. My husband and I spent hours at night teaching her to walk. Eventually we saw progress.

But just when we thought things were going great, something would happen like a seizure, an off-hand comment from someone, or a therapist reminding us of just how much work we had ahead of us, and we'd be thrown back into the grief spiral again.

Yes, I am grateful that I still have a beautiful child to hold in my arms at night and sing lullabies to. I can gaze into her deep blue eyes whenever I want to. I cherish the fact that I still have a daughter. But, she is not the same child I gave birth to. She's not the Keelie I envisioned when I chose her name. I miss that Keelie. And though I love Keelie as she is, I loved that old Keelie too. I have no headstone, no cemetery plot to revisit and mourn that old Keelie (don't get me wrong, I'm grateful that I don't have these things). All I have are these photographs.