In some ways, my life feels like it's starting to look like other people's. There's a sense of lightness in my home. Even laughter. When I step out of my body and watch myself from a distance, I see the relief in the way I move, in the way I talk. But on the inside, the pain of Mila's absence never lets go. Today, I hold both relief and sorrow.
I started "This Is Today" to offer a window into Mila's life, into our family's. In turn, it has helped me navigate my emotions. However, I quickly realized that these photos weren't only about me, Mila, Azlan or Batten disease. They represent the physical and emotional impact rare disease has on families around the world, no matter the name of the disease, what it looks like or where these families live. Today is International Batten Awareness Day and while Batten may be rare, I share this photo to show the weight carried by millions of families living with genetic diseases, and the strength needed to keep going every day.
