It’s easy to assume a six-year-old can’t understand something as complex as death. I’m struggling with it despite forty-four years of life experience. But I’ve decided to share my own questions about what might lie beyond death with Azlan. He amazed me with his curiosity and creativity in imaging the path Mila’s spirit might take. A gift of reassurance for us both.
When I was eleven, I discovered my love of nature at a summer camp for girls in the mountains of North Carolina. An experience that shaped who I am today. When Mila was little, my heart lit up imagining her experiencing the same joys of diving through the lily pads in the lake, learning to roll a kayak and hiking through the trees. But I've been forced to let go of those dreams. Instead, I sing to her and imagine us by the campfire, an orange glow lighting up the nighttime forest around us.
Oh, Mila... what a road we've been on. Three years ago this week, I kissed your forehead and watched as you were wheeled back into the procedure room for your first infusion of milasen. The roller coaster that was barreling down the tracks suddenly swung around a turn and started rising to the sky. Today, I reflect on the blog I wrote the night before milasen began...
"Tomorrow, Mila will receive an injection of a new medicine that will go directly to her brain. It is experimental, which means it could be that breakthrough treatment that makes the impossible become possible. Or it could be a valiant attempt that just falls short. She could be the pioneer whose life is saved, or the one whose sacrifice helps those that follow."
A few years ago, I took a course to become Mila's in-home certified nursing assistant to learn tips and get affordable health insurance. The course ended with eight-hour shifts in a memory care facility, an experience new to me. A woman whose diapers I changed was surrounded with photos of a lifetime of theatrical performances, my favorites from Paris in the ‘60s. A man I spoon-fed pureed eggs to, I put back to bed at 10am in his room plastered with the towering mountains he climbed throughout his life. His law degree and photos of his family on his dresser. I left in silence, saddened for those souls in limbo, trapped in broken bodies, in broken minds.
I used to shield Mila from busy situations and commotion. It triggered her, made her confused and overwhelmed. Over time, as her reactions dulled, my efforts to protect her became merely symbolic. Now, I encourage the noise and interaction of life that surrounds her so she feels included, alive.
Today, I sit on the floor and shed tears for the hatred that has permeated our country and world, and for the pain that has ripped through my own life over the past few years. But as I cry, I feel a sense of lightness. A shift toward tears of hope for kindness in the world, for hope of a healthier future for children with rare diseases, for hope that my own life will unfold in a way that makes me happy.
Azlan and I spent a week on a nearby farm trying out a therapy around grief. I was skeptical, but my words about Mila haven't seemed to be enough. One afternoon, I walked into a pen to find Azlan and the therapist standing by a white pony named Sparkles. He looked up at me and whispered in a soft voice, "She has a genetic disease and her hip is out of the socket like Mila's. She's dying." I was caught off guard. He turned to the therapist and asked if he could groom Sparkles. As he gently pushed the wooden brush in circles through her long wintery coat, in his face I could see the connection he was making.
Mila's eyes are the window into her soul. They have beamed with the excitement of climbing to the highest tower on the playground, with the eagerness of jumping off the bed with her friends, and eventually with the confusion of how to process the sights and sounds in the world around her. Even now, after having lost all of her abilities, I still see Mila through her eyes.
Quiet simple moments with Mila have kept me going. They’ve given me a chance to connect with her, feel happy. But these moments have become heavier, with sadness looming in the air. Now, I’m forced to ask myself what is living?
I've struggled with how much to tell Azlan about Mila. Sometimes, I think he understands. "When Mila dies...", he'll say. But then he'll count to twenty and quiz me on who will be that old next? "Mila!" he yells out. So I've decided to be honest. His quiet sadness breaks me. As my own emotions deplete me, I try to find a balance between explaining the heavy truth and letting him just play and draw, and be a six-year-old. All while holding Mila tighter than ever.
Mila's eyes are closed most of the time these days. I find myself sitting by her side, studying her round cheeks and long dark lashes. I wonder if she's tired from sitting all day? Or if her thoughts are empty because her brain is atrophying? Maybe she dreams of memories of eating pizza or sledding down her favorite hill with friends? A little piece of me still waits for her to open her eyes and smile up at me like she used to.
Today, Mila received her infusion of milasen. Every two months, when I walk the hospital hallways by Mila's rolling bed, I am reminded of the incredibly fortunate place I stand in. The place of having reached a treatment. The place parents of sick children dream of every night, and fight for every day. When we first embarked on this journey, I remember thinking that our fight might not be for Mila alone. Today, I feel the presence of the 60 million children around the world with fatal and life-threatening rare genetic diseases. Our fight is now their fight.
My way of showing and feeling affection is through touch. I often think back to the moment at the top of our stairs when baby Mila crawled up onto my lap and kissed my cheek for the first time. But it's been three years now since I last felt Mila's little arms wrap around my neck. Emptiness fills my chest.
