04.26.2023

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.

04.13.2023

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.

02.23.2023

Last night I dreamt of Mila at ten years old. Batten had taken over, but she was receiving milasen. As we lay in her bed, my arms wrapped around her from behind, my face nestled in her soft hair, I noticed her cheeks rise in a wide smile and heard the familiar little laugh of happiness. She mumbled something I felt was to me. At the end of an outstretched arm, her fingers wrapped around her favorite Olaf toy. My heart pounded in excitement. I suddenly awoke to the sounds of morning, but closed my eyes, longing to return to that place. 

One day, families like mine will see their children cured before symptoms ever begin. But today, these seemingly tiny changes that dramatically improve our lives - a smile, a murmur, a grasp - will be our wins and the door to future cures.

02.09.2023

Saturday will be two years since Mila died. The decisions, the desperation, Mila's breathing, the feel of her braided hair, her soft hands, her heartbeat, the silence. 

The trauma of that day never leaves me. 

I try to listen to the parts inside me, but they pull at each other. One feels she did everything, gave everything. Another says she could have done more, been there more. A third bows her head and cries, so loudly that the others stop and bow their heads as well. And another sits in the corner, her hands on her bent legs, and stares. Lost. Alone. 

01.31.2023

Five years ago today. I helped Mila out of bed, slipped on her good-luck bunny socks and brought her into Boston Children’s Hospital to receive milasen for the very first time. This morning, I thought back through the years to that moment. I allowed my convoluted and conflicting emotions to build and flow out of me, alongside my tears...

I am broken. From a life without Mila in my arms.

I am devastated. That the science wasn't in time for her.

I am angry. That we have the technology to help thousands of dying children, yet only a handful have been treated.

I am defeated. By a system barely moving for 60 million children with rare diseases who will die by the age of 5...

I am grateful. For the team who fought so hard to give my daughter a second chance.

I am excited. For the future of the children treated since Mila.

I am motivated. By the doctors, researchers, families, companies and regulators who now see individualized medicines as an impactful solution to the global health crisis of rare disease, and are working toward it.

I am hopeful. That future Mila's will be diagnosed and treated early enough to never know the effects of disease...

I wipe my tears and open the blog I wrote 5 years ago and read out loud:

"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 who follow."