This is Today

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...

 

10.27.2021

Eight months ago, I held Mila as her life force was guided up and away from her body. In that moment, something changed in me. Perhaps a realization that the body and the spirit have their own distinct paths. Today, I hold my mother’s hand as cancer threatens to take her from me as well. Her body is weak. But her spirit, while quiet, burns strong as it always has.

10.19.2021

I was seven months pregnant with Mila when I was handed this image of her profile. Her tiny nose, her mouth, her chin. At that time, I had no idea that she had a genetic disease and the effects of it may have already begun to take place. Today, we are moving toward diagnosing babies at birth. But the dominoes of genetic disease may begin to fall even earlier and prenatal treatments are on the horizon. It's hard not to stop and wonder what life would have looked like if Mila had received milasen in utero.

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.