When I became a mother, I made a silent vow to stand up and always do what was best for Mila. To protect her voice. I never could have imagined just how painful this would be. I've fought with everything in me for her life. But recently, I've felt that fight shift. I wake up every day and ask myself what Mila would want me to do. The weight is heavy, but I am her mother, her voice.
I've always loved the commotion of a full house. Like the one I grew up in. The background noise of disagreements followed by laughter, the clinking of dishes and pans, the sound of doors opening and closing. I never imagined a day when it might just be me and my son. But this is today. Mila's caregivers, her therapists, Azlan's homeschool friends and their parents fill my home with the familiar sounds of life.
When I was fighting for Mila's treatment, I was on a mission to keep her walking. She pushed her stroller down the block and back every day. With treatment, her posture and steps stabilized, even improved. But over this past year, Mila's determined little feet dragged, then finally gave up. The thought of a wheelchair is unbearable. So I pick her up and carry her, always careful not to let her feel the impact her 62 pound body has on my back and neck. I take a breath, relax my shoulders and talk to her quietly as I carry her.
This morning I went on a trail run and passed an older woman walking side-by-side with her grown son, gently guiding him by the arm. As I looked up to say hello, I heard the familiar soft tone of encouragement mixed with exhausted patience. I used to see families with special needs children and turn away with a sense of uncomfortable helplessness. Now I smile and think to myself, "I understand."
Every day, we leave the house with Mila at least once for school, therapy, her dad's, the hospital. When we leave, there's a process. I open the door to Mila's side of the van and unfold the supports in her car seat. I go back in and get Mila dressed with her jacket on, prop open the front door, and carry her to the van, balancing her on my knee before lifting her into her seat. The process has changed over time so it just feels normal now.
As Mila has changed over the years, I’ve watched how her friends have responded. They’ve known her from the days when they ran, sang and jumped on beds together. Now, they stop and watch her in confusion. Some seem drawn to her by a magnetic energy so strong. They sit by her side. They touch her hair. They place their hands on her body. I only wish she could see them surrounding her.
I always find myself in front of the kitchen drawer of feeding tubes, syringes and tiny mixing bottles. Every two hours of every day Mila needs medicines, water, supplements, pureed food. Her every moment of life has depended on us for years. But since she stopped eating by mouth, it now feels like a regimen. No room to slip. No room to forget. No room to doze off and imagine a life without the relentless heaviness of responsibility.
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...
