I sit on my couch and look across my living room at Mila's quiet bean bag chair propped against the shelves. I close my eyes and imagine her warm body pushed up against mine. I smell her hair, my head just above hers. I feel my hand on her chest, gently rising and falling. Then I open my eyes and look around at the emptiness.
The sadness comes on suddenly. In some ways it's getting harder, more frequent. Part of me knows I have to face it, but another part turns and runs far far away. As I walk, I look down and notice the imprints of rugged boots in the mud and melting snow. I hear birds. I long to connect with Mila, but I feel blocked. I breathe in slowly and deeply, then breathe out. The background fades. And then I let go. In the air around me, I hear the little giggle I've come to know.
Azlan just turned seven. The same age as Mila when she began milasen. On Azlan’s birthday, alone in our home, I watch him. I realize how tall he is. I notice his curiosity about tornadoes, gem stones and Harry Potter. I think back and wonder if I was ever really present with him? “I’m sorry”, I told him. “I know my mind has been somewhere else, but I want to get to know you now.”. He turned to me and said, "I know mommy, you were always thinking about Mila. But it's ok."
Today I feel alone in my post. Just me. It's been one month since Mila's spirit left her body. But it feels like yesterday. I've tried to put a pen to paper and express the images and feelings running through my mind. But something stops me each time. Just as I turned to this journal to help me prepare for what was to come, today I find myself turning to it to find my way back into life. Ending this journal with Mila's death doesn't seem right. My life continues as a single mom to Azlan, as a fighter for rare disease, as a person changed forever. This is part of Mila's story. And so I continue to share...
Yesterday, Mila’s spirit left her body. A day so trying that it will forever change me. Just as I labored to give birth to her warm body as it worked its way so naturally into the world ten years ago, yesterday Mila labored in my arms and Alek's to release her spirit and work her way so naturally through the process of letting her body go. I watched as she found peace, free of the pain and confinement, free to fly as the hummingbird Azlan has seen her move into. Today, I find myself on my knees outside Mila's bedroom door, unable to go in, my head buried in the carpet of tears. I gasp in pain, unable to find her, to hold her. Then I sit up and breathe, and think about this next chapter in my life. Mila’s spirit on my back, my little laughing 3-year-old with her arms around my neck, with me every day as I travel through life. I think about the chance for me to live and love, and for Azlan to finally do the things he hasn’t been able to. I think about a real future for children across all rare diseases that Mila and I continue to fight for. I open myself up to all of the emotions that are passing through me as I write this.
My Mila bug… thank you. Thank you for letting me be your mommy, forever. Thank you for showing me what raw love is, for exposing the beauty in the smallest moments, and for giving enormous purpose to your life and mine. I always knew you were bound to do big things in life, but never did I imagine you would impact so many of us around the world in the way that you did...
Today, I hold Mila closer than ever. The background of movement and noise in our home blurs. Mila’s long thin fingers come into focus. A freckle on her hand. The dimple on her chin. I breathe in her slow warm breath and watch as my mind records these moments, carefully storing each one away.
In the early hours of the morning, my body pushed up close to Mila’s in my bed, I dreamt that she sat up and said “Mommy, let’s pretend I’m a Jaguar!”, then slid off the bed with smiling eyes and ran. In my dream, my daughter was just three, the little Mila at her peak who hadn't visited me in my dreams in years. I woke with an indescribable excitement, my heart racing. I searched for someone to tell, Mila’s disease was gone. But my mind slowly awoke, and I cried out loud as I looked over at Mila's sleeping body lying next to me. In the stillness of the dark room, a realization travelled through me. This was Mila’s message to me. She was ready to slide off the bed and run. Free of pain and confusion. And without the need for words to describe it, I could now feel there would be a happier way for us to be together.
My emotions change by the minute. Agony, relief, guilt, numbness, terror, brightness. There are moments when I panic in search of breath. And others when the whistling wind through the trees calms me, a reminder that Mila's spirit has no end. I feel myself retreating. Yet I continue to expose my thoughts through these photos, these words. Somehow it makes the surreal real. It knocks down the walls of isolation. It reminds me to trust myself, and take one more step forward.
In my mind, the image of being a mother has always been holding my children in my arms. Smiles and happiness. But this image is crumbling. My days are filled with conversations and decisions I never imagined would be part of being a mom. Pain is my today.
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.
