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.
The small cardboard box that held Mila's ashes sat in the funeral home for months. Every day I thought about it, but I couldn't find the strength to pick it up. When I imagined holding it, feeling the weight of it, I struggled to breathe. Until I met an artist, a mother who lost her son to a rare disease, and faces the possibility of losing her other two children to the same condition. Someone had connected us, and she offered to make Mila's urn with love. I sat in my parked car on a cold, rainy evening and cried on the phone as I told her stories of my Mila bug. She listened, her gentle voice telling me she understood. Over the next month, she incorporated nature, color and music into the piece. She heard my uneasiness with the sharp corners of a manufactured box, and instead found a round gourd and cleaned it. She came up with drawings of hummingbirds, played with colors, and found a hand-blown marble for the lid. She removed a string from her daughter's violin and wrapped it around the base. And when it was ready, she drove down from her house in the Colorado mountains to meet me, we hugged tightly, and she handed me the small beautiful gourd which she had poured so much love into. I placed my hands around it and held it to my womb.
There are days when it's hard to remember who I was before Mila. When I think of what it means to be happy, to feel joy, pain, love, I think of the last ten years. But there are other days when I think back through the movie reel of my life and Mila seems to have simply come and gone. Just like that. Like a sun that rose high in the morning sky, shone brightly and warmly on the world around her, and then quietly set over the mountains.
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.
Before Mila died, I imagined what grieving might look like. I couldn't know what emotions I would face, but I pictured the comfort of space and time around me. I had forgotten to consider that somehow I still needed to be a mom to my six-year-old who lost his sister. As my body weakened with grief, I found it difficult even to lift a glass of water to my own mouth. But Azlan needed me more than ever to listen to his stories, to chase after him around our house, to make him dinner, to hold him tightly when he screamed and fought back. I still struggle to hold myself up while at the same time holding up my son. But every day is a new day, and we're slowly finding our way through this together.
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.
When desperation sweeps over me, I am drawn to the trees. The other day, as I quietly walked through a grove of tall sturdy trunks supporting canopies high above, I looked up and thought back to a moment years before. It was the first time I had met other rare disease mothers like me and I watched as their arms, like tree limbs, gracefully loved and supported their children. Their unusually beautiful poise inspired my Blog...
"I didn’t know any details of these mothers' lives, but yet I felt I knew them so well. I knew the sharp turn their lives had taken, the tears they had shed, the strength they had to find in themselves to keep moving forward, and the immense never-ending love they had for their children. I knew the adjustment they eventually made to accept their new norm. And the ups and downs their road had taken them on... We are parents who must stand tall like trees, whose roots extend from our bodies and wrap around our children’s eyes, their legs, their bodies, and their minds."
Mila's bedroom door has been closed. I've walked by it every day, aching to go in, but turning my head away in fear of what I would find. A few weeks ago, I opened the door. Then one day I stepped in. Then back out. The other day I was walking down my stairs and without thinking, I turned around, walked back up to her door and went inside. I froze. Her bed, her sheets, her pillows were just as I left them when I picked up her body and carried it out of the room two months ago. I fell to my knees, my forehead against her bed, my hands gripping her sheets. I gasped for air as I cried louder than I ever have. And then I sat up and looked around, the silence reminding me I was alone.
