My emotions run high. Tomorrow marks the end of our five month stay in Boston around Mila's genetic treatment, as we prepare to head home to Colorado. Our bags are packed and the kids are in bed. The sound of live Cuban music dances through our open window and lures me out onto the streets of our neighborhood. The air is warm tonight with a slight breeze just cool enough to keep me moving. A final evening stroll allows me the rare chance to clear my head and reflect on today.
It seems like just yesterday that I left the house on a cold January day for a run in the snow to breathe and prepare myself for what was to come - the excitement and fear around the unknowns of Mila’s upcoming treatment. Since that day, we have been in and out of the hospital countless times, we’ve had days where exhaustion, sadness and tension have worn us down to the ground, and other days where Mila’s genuine laughter or Azlan’s fantastical stories have lifted our hearts to the sky. Through all of this, I’ve fought hard to stay strong, to keep pushing ahead, to keep believing in Mila and the incredible advances in the science of today.
As I stroll through the lamp lit streets, smelling honeysuckles in the breeze, I try to slow my breathing and focus on the now. Today was a good day. Mila was amazingly alert, her eyes wide open and glittery, her responses just right. She stood tall and strong and lifted one of her feet high when she walked with me right behind her. Azlan offered her toys and she held onto some of them, excited that her brother was playing with her. Mila radiated the energy we know so well.
The feeling in my body today is a far cry from the despair and sadness that I felt in January when we first arrived in Boston. Just before we left Colorado, I had started to feel I was losing Mila, the essence of who she is. There are no words to truly describe this feeling. It has been a pain unlike anything I have felt thus far. Watching my previously outgoing daughter lose her ability to see the world around her, to express her feelings in words, to run around giggling with her friends has been excruciating. But watching her spirit slip away, her lack of response to what has always made her laugh, has been unlike anything I have ever felt. I went to a place beyond pain and helplessness. A place where I desperately searched for some way, any way, to escape watching my Mila disappear forever.
Batten Disease is cruel - it affects every cell in Mila’s body and brain. And she had lost some important abilities before her treatment started. But despite all of this, over the past few months she has picked herself back up and fought with a smile on her face. There are still moments and even full days when my heart sinks as I struggle to connect with her. She sits quietly with her head hanging low. Walking is slow and her feet drag with each step. But there are even more times where her reactions are sharp and her radiant energy fills the room. Her head is lifted high and her eyes are bright with curiosity and excitement. Her laughter is genuine. I beam as I watch how alive she is.
I don’t know what tomorrow will bring. I remain cautiously optimistic and continue to hold my cards close. But tonight I look up to the evening sky and allow myself to just be happy with today. My smile is wide tonight. My body and soul feel light. I realize there is no promise that tomorrow will be like today, and this may be as good as it gets for Mila and our family. But I'll take this good day, and hold tight to the hope that more sunshine lies ahead.
- Julia, Mila and Azlan's mommy