Before Mila was diagnosed with Batten Disease, I had never heard the term “terminally ill” used to describe children. I had seen photos of kids with Leukemia, their smiles wide and their heads bald and shiny. But I only allowed myself to feel the pain for a short time before turning the channel or flipping the page. It was too much for me to bare, especially once I had children of my own.
Now I find myself on the other side of the fence. The pain I have experienced over the past nine months is something completely different than what I had felt when thinking of the kids with Leukemia. The pain I feel runs through my veins, down my nerves and wraps around my heart. It is now part of who I am.
I consider myself a nostalgic person. I love to look back on the past and smile and laugh at the amazing memories I have collected along the path of life. Splashing in the lake with my brothers on hot summer days, kneading pasta dough with my grandmother, riding motorcycles through the hills. It makes me feel young, as if these times were just yesterday. But this changed when Mila was diagnosed. These memories have fallen down the totem pole to a place I can barely see. My joy of the past has been tainted. Without Mila’s health, these times don’t seem to matter much anymore. I still allow myself to go there, to relive the happiness and share these memories with my kids. Even to laugh about them. But in my mind, they have turned into experiences Mila may never have.
Instead of reminiscing about the past, I try to live in the now. But no matter how much I try to stay present, the future looms above us and forces us to face what lies ahead. My conversations with Alek now include terms like Rescue Medications, End of Life Plans, Do Not Resuscitate, Brain Donation... We turn to other parents of terminally ill children to ask about feeding tubes, leg braces, shaking vests to avoid pneumonia, wheelchairs. And the photos of children at the end of their fight with Batten Disease show us what our sweet Mila will endure in just months or years from now.
I carefully walk the fine line between reality and hope. A small fragile place between digesting that no child has ever lived with Batten and knowing we are riding a scientific wave towards curing genetic diseases. A cautious optimism. There are days when I have to remind myself of Mila’s reality, and not think about the possibilities our trial offers. I try to imagine that the trial is an impossibility, that all we have is the now. It allows me to be more present than ever. I watch the way Mila’s thin fingers gently rub the bumps on the Lego block, the way her soft hands tap the hard wood floor as she listens to the sound it makes. I watch the way her eyes get wider and her face lifts and smiles when I retell Goldilocks and the Three Bears. I simply try to be Mila’s mom by my daughter’s side, taking in the simplest of moments together.
And then there are days I force my chin up to look across the wide blue Colorado sky and remind myself that Mila’s symptoms could truly be halted, even reversed. That the effects on children in very recent trials are astonishing scientists and bringing enormous hope to parents. When I climb into bed at night, I close my eyes and envision Mila walking up a dirt path with strong legs. I picture her little fingers holding her doll tightly by her side. I hear her giggling and singing Puff the Magic Dragon, perfectly forming the words that she now so desperately tries to get out. My mind hovers over Mila as she continues to walk up this path to a place where retina transplants and brain regeneration make a breakthrough. Mila lifts her head and looks out across the mountains, her smile wider than ever as she once again sees the colors of life. And there I am at the end of the road, on bent knees. Mila runs right up to me and hops onto my lap. She looks into my eyes once again and says “I love my mommy”.
Julia - Mila's mommy