04.22.2021

When the pain hits, it knocks me down so hard that I barely have it in me to get back up. I feel my mind desperately searching for Mila. I watch my fingers hopelessly wandering... grasping onto a pillow, the sweater I'm wearing, the steering wheel of my car, Mila's worn and loved Olaf. I squeeze so tightly, but it doesn't help. All of that love that used to flow so easily down my arms, through my hands and into Mila's soul is now stuck. Some say grief is just love with no place to go. Today, that's what I feel.

04.14.2021

When desperation sweeps over me, I am drawn to the trees. The other day, as I quietly walked through a grove of tall sturdy trunks supporting canopies high above, I looked up and thought back to a moment years before. It was the first time I had met other rare disease mothers like me and I watched as their arms, like tree limbs, gracefully loved and supported their children. Their unusually beautiful poise inspired my Blog...

"I didn’t know any details of these mothers' lives, but yet I felt I knew them so well. I knew the sharp turn their lives had taken, the tears they had shed, the strength they had to find in themselves to keep moving forward, and the immense never-ending love they had for their children. I knew the adjustment they eventually made to accept their new norm. And the ups and downs their road had taken them on... We are parents who must stand tall like trees, whose roots extend from our bodies and wrap around our children’s eyes, their legs, their bodies, and their minds."

04.06.2021

Mila's bedroom door has been closed. I've walked by it every day, aching to go in, but turning my head away in fear of what I would find. A few weeks ago, I opened the door. Then one day I stepped in. Then back out. The other day I was walking down my stairs and without thinking, I turned around, walked back up to her door and went inside. I froze. Her bed, her sheets, her pillows were just as I left them when I picked up her body and carried it out of the room two months ago. I fell to my knees, my forehead against her bed, my hands gripping her sheets. I gasped for air as I cried louder than I ever have. And then I sat up and looked around, the silence reminding me I was alone.