this is today

Four years ago, when my 6 year old daughter Mila was diagnosed with Batten disease, I decided to open the door to my home, to my life, to my emotions. I wasn't a scientist or a fundraiser, but I knew that I needed to draw attention to Mila's story. All I had to offer was my vulnerability. So I began to write a blog and speak whenever I was given the chance. What started as a mission to raise funds and find researchers in a race to save Mila’s life, turned into a way to help me survive, and eventually start to heal. I have been humbled to hear from so many that the way I've shared my story has helped them face their own lives.

And so I decided to launch this photo journal in hopes that it continues to help me as well as others navigate the ups and downs of life. Today, I let the world into the turmoil of my thoughts, the closet of my hopes and fears.

This is my life. This is my today.

Sometime in the last few years, I remember pleading out loud for a life without pain. But the words didn’t feel right. I knew my pain would always be with me. Yet I desperately wanted joy. And then, one day, I looked down and realized I was finding a way to hold both...

Mila came into the world strong and healthy. She was a runner, a climber, a singer. Now she is fighting Batten disease - a rare and fatal condition with no cure. She no longer has the words to tell me what she’s thinking. She no longer has the voice to sing her favorite songs. She no longer has the ability to reach out and touch me. But it’s the small moments that allow Mila to feel heard and felt, allow her to feel my love, allow us to connect as mother and daughter…

How much of life’s hard lessons Azlan has had to learn at such a young age. Yet his world isn’t dark and sad like I feared. Instead, it is full of light and a love of life. His compassion for helping others is growing just by being part of the extended family that loves Mila. He has turned the trials and sorrow into an appreciation of the simplest moments in life.