Fries Family (1/3)
Fries Family (2/3)
Fries Family (3/3)
(1/3) In January 2018, we moved from Colorado to Boston for Mila to begin her treatment. Just before we left, two sisters living just an hour away were diagnosed with another form of Batten disease. Lilly was six then. She was running around, playing with friends, and singing her favorite songs. Today, Lilly is blind and spends most of her time on the floor. When she finishes eating, her mother holds her hands, wipes them clean and supports her daughter as she stands.
The bronze sculpture of Mila is done. Two years of working with the artist to capture Mila's spirit and gently helping the confused part inside of me understand that this wouldn't bring her back. Last week, I brought Azlan to the foundry. He walked quietly through the sculptures being worked on and out into the sun where a bronze Mila stood looking at him, a hummingbird sitting delicately on her finger.
Azlan stepped up onto the base, wrapped his arms around his sister, and closed his eyes.
Today, I had a medical procedure, nothing big or worth thinking much about. I would be in and out and home before I knew it. But as I climbed into the hospital bed, my mind went right to Mila and I cried. I closed my wet eyes and in the darkness Mila knew so well, I slipped into her body in a blue gown lying on the rolling bed, an IV in her hand, a warm blanket over her, the heightened sounds of beeping monitors coming from above. Her mommy’s hand in hers, the soft voice singing to her.
Then I felt myself detach and come back into my own body lying alone on the hard bed, without Mila's hand in mine, without my own mother by my side like she would have been today. The memories of what I've had overlay the pain of what I've lost.
