12.14.2021

My mom is now gone. Mila is gone. And a tangled knotted web of emotions of pain, confusion and relief separates me from my life. I feel alone. I sit on my sofa, close my eyes and imagine my mother and my daughter right beside me. I reach my hand out and rub Mila's leg. I feel her warmth. I hear my mom's laughter. And I hear her voice telling me that life isn't easy, it isn't fair, but no one promised us it would be. I hear her reminding me how much I have to be grateful for... for my children, my family, my friends, my health and my mind, my adventures and experiences, my love, my sense of purpose in life. And for everything I have today. I see her wink at me the way she’s done since I was little, and hear her tell me it's ok, don't dwell on the past, you and Azlan have a life ahead of you! I open my eyes to an empty sofa and return to my life's delicate balance of grief and joy.

11.05.2021

Today, on Mila's birthday, I rolled down the windows of my car and let the warm Colorado air blow across my face as I sang Mila's favorite songs. Puff the Magic Dragon, Octopus's Garden, Rainbow Connection, You Are My Sunshine... the ones I've been singing to her since she was born. And the ones I will continue to sing far into the future to help me heal and keep me connected to my little bug...

10.07.2021

When Mila's life took a turn, so did mine. Today, I find myself surrounded by children with rare genetic diseases. To some, that may sound sad, but instead I feel fortunate, enriched. There is something so special about children who are forced to find ways around the inability to talk, to see, to eat, to live independent lives. The other day, I visited a Boulder friend Nina, "unstoppable Nina" as her family calls her. Nina has a rare fatal disease called Leigh Syndrome. She's just Mila's age. She has brown hair and brown eyes. As I put my hands on her warm skin and watched as her curious eyes spoke to me, I pretended for just one moment that Mila was beside me.

09.15.2021

Signs of Mila fill my home. Her stroller. Her walker. Her bean bag chair. I open a kitchen drawer to find feeding tubes or one of her hair ties. I come across a pair of her socks hiding in a bin of Azlan's toys. Part of me wants to leave everything just as it is. But another part wants to move on. The other day, I walked by Mila's stander and I felt the sudden urge to move it, so I did. I wonder, can I find a delicate balance between holding on and letting go?

08.24.2021

When Mila died, I fought to make it to the end of each day. A good friend who experienced great loss told me the pain would dull, but over time I would wish I could feel it more sharply. As my days start to look and feel more normal, when the sadness comes on I find myself physically holding onto whatever I can find, allowing that shooting pain to return. Perhaps it's the pain that brings me closer to Mila. An expression of my love for her.

07.15.2021

Mila's bedroom has felt so empty, so quiet. But it's filled with emotions. Some days they push me away. On others they pull me in. I haven't felt comfortable moving her bed or changing the feel of the room. But I found a space by her window, between the fairy curtains I sewed for her when she was little, and I placed my small desk. Every morning, I sit and work on my foundation toward a brighter future for rare disease. While I type, I stop, sit back and notice the light and warmth I now feel in Mila's room. This is where I want to be.

06.09.2021

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.

05.11.2021

The movement of life is slowly returning to our home. Azlan's pod school friends sit down for lunch and tell jokes, then jump up and run loudly around the room. But the energy in our house is different. Since last summer, Mila had sat quietly in her chair. No words, no vision, little to no movement. But only now do I understand how strong Mila’s presence really was. Today, I see the busyness, but feel the emptiness.

04.22.2021

When the pain hits, it knocks me down so hard that I barely have it in me to get back up. I feel my mind desperately searching for Mila. I watch my fingers hopelessly wandering... grasping onto a pillow, the sweater I'm wearing, the steering wheel of my car, Mila's worn and loved Olaf. I squeeze so tightly, but it doesn't help. All of that love that used to flow so easily down my arms, through my hands and into Mila's soul is now stuck. Some say grief is just love with no place to go. Today, that's what I feel.

03.23.2021

The sadness comes on suddenly. In some ways it's getting harder, more frequent. Part of me knows I have to face it, but another part turns and runs far far away. As I walk, I look down and notice the imprints of rugged boots in the mud and melting snow. I hear birds. I long to connect with Mila, but I feel blocked. I breathe in slowly and deeply, then breathe out. The background fades. And then I let go. In the air around me, I hear the little giggle I've come to know.

02.09.2021

Today, I hold Mila closer than ever. The background of movement and noise in our home blurs. Mila’s long thin fingers come into focus. A freckle on her hand. The dimple on her chin. I breathe in her slow warm breath and watch as my mind records these moments, carefully storing each one away.

01.26.2021

Oh, Mila... what a road we've been on. Three years ago this week, I kissed your forehead and watched as you were wheeled back into the procedure room for your first infusion of milasen. The roller coaster that was barreling down the tracks suddenly swung around a turn and started rising to the sky. Today, I reflect on the blog I wrote the night before milasen began...

"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."

12.16.2020

At the beginning of the day, I sit Mila on the edge of her bed. Innately, I wrap my body around hers. The warmth of love moves through me... only to be cut short by a sudden jab of sadness. It's easy to stop there. To unlock my arms and legs and push through the rest of the day. Instead, I lower the protective wall inside me and allow my emotions to unravel.

11.06.2020

Ten years ago, I became a mother. And just like that, meaning was given to my life. When I close my eyes and think back through the movie reel of my memories, tears build deep in my chest and pour out of my soul. So much pain in the acceptance of today. But so much happiness in the journey that got us here. Happy birthday to my sweet Mila bug...

10.01.2020

I woke up this morning feeling overwhelmed with what I’ve committed to, how much of my life I am allowing the world into see. So I drove up the mountain and walked through the changing Aspens... thoughts came so naturally. I was reminded of the relief I feel when I share. There is nothing to hide. This is me, today.

09.24.2020

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. This is my life. This is Today.