02.12.2021

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...

02.09.2021

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.

02.05.2021

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.

02.03.2021

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.

02.01.2021

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.