On the eve of Mila’s treatment, I am filled with many emotions. I have pushed so hard over the past year to get to this point, that there was little room left to think or feel. Now I am here, sitting on the hardwood floor of our rental house in Boston with my back against the wall. Mila’s treatment is scheduled for 12 hours from now. I hear myself breathing. I feel my chest expanding and collapsing. I look around the room and seem to notice every detail, perhaps because this is the first time I have allowed my eyes to drift in over one year.
Part of me just wants to hit the fast forward button and have Mila’s first treatment behind us. But something pulls me back. Deep down, I know that I am in a sweet spot that I may never be in again. A spot between hope’s edge and a miracle. 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.
It’s hard to digest the different paths that Mila’s life could take from tomorrow on. Whenever I’ve found myself facing difficult thoughts, I look up to the sky. It clears my mind and lifts my spirits. So I went on a run in the snow today and looked up. I found myself reaching my arms out wide and asking aloud for Mila’s treatment to offer the best outcome for her, whatever that may be. I asked for the strength to enjoy this beautiful life, no matter what turn it takes. And I asked for help transforming Mila’s story into hope for families like mine crying behind closed doors.
I tell myself that I have done everything I could to give Mila the very best chance at life - though it is much easier to say than accept. I question what stone I have left unturned. But I realize we are fortunate that Mila was diagnosed when she was and not any earlier. Science is getting close to curing devastating genetic diseases like Batten. But genetic treatments are just picking up. We’re paddling into the big wave - it’s rising, we can feel it. After all of the trials I have followed and articles I have read over the past year, I can’t believe that we are actually getting up on our feet and riding that wave. It’s just barely on the rise, but we’re standing.
Leading up to this day, I asked family, friends, and those following Mila’s story around the world to close their eyes and envision Mila healing. Since then, I have received beautiful messages of dreams and visions that people have had. A friend I met the month Mila was born, sent me an email that moved my body and my soul, and I will treasure it forever. As I sit on the floor, I pull it up to reread:
Dear Julia, I closed my eyes and I saw Mila, who had just been born, in the coffee shop in Boulder where my husband and I met your family for the first time. I saw Mila in Boston overcoming the difficulties of this new revolutionary genetic therapy. I saw Mila grow up and, as an adult, talk about her story in public. Like that, in just a few emotional seconds, I saw her life. I tried to tell her that I love her and assure her that her future is possible.
My eyes squeezed shut as hot tears poured down my face. Through the tears, I saw Mila’s rainbow shirt lying in a pile by the wall. Before putting Mila down to sleep tonight, I took a bath with her. I sat behind her in the tiny old tub and washed her body and her hair. I sang her the soothing melody Dona Nobis Pacem, the song I used to sing to her as a baby, and one my mom sang to me. In Latin, it means “Grant us peace”. It felt perfect for me and my sweet Mila, sitting in the warm water together, my body wrapped around hers. I felt the cyclone of positive healing energy from thousands of people praying for and thinking of Mila. It circled around us and engulfed us.
Tomorrow begins the next chapter of our life...
- Julia, Mila's mommy