For the first 10 years of my daughter Marlie’s life, I was living in “no man’s land.” My husband, Jim, and I knew something wasn’t quite right, but Marlie’s “symptoms,” so to speak, were manageable and not extreme enough to sound off alarm bells.
You see, Marlie’s condition was ambiguous. She was delayed in speaking, yet intensely expressive in her facial expressions and typical toddler “jibber jabber.” She was fun-loving and sweet, yet we witnessed her suffer endless fussiness and frustration. In our hearts, we knew her severe behavioral swings were a signal of something more going on.
For the first decade of her life, I lived most of my days hoping I (or somebody else) would “fix” her or that the next time we took her to the doctor, we would learn of a miracle, cure-all medicine that would heal her. However, that feeling of hope I had so desperately hung onto for all those years was dashed away in an instant one fateful day in the fall of 2014.
In the third grade, Marlie was at school when her teacher frantically called me to tell me she had suffered a seizure. I remember exactly where I was. I felt frozen in time like the floor had fallen out from beneath me. All I remember was anxiously jumping in my car and racing to her school. When I arrived, the EMT’s were already pushing her on a gurney into an ambulance.
At the hospital, the doctor told us that Marlie’s case was very unique, and he felt it was in our best interest to take a deeper look and run a series of genetic tests on her. Several weeks later, the results were in. All I remember was his voice saying, “Elaine, we found something.”
Marlie was diagnosed with a genetic deletion. She is missing a small portion of the CHD2 gene, which affects neurological processing and overall cognitive development. At that moment, all of the things I thought but never confirmed came flooding over me. Marlie was different, and there was, in fact, no “cure.” Right there, it clicked inside me—I had been living in “resistance” mode for 10 years and acceptance was the only way forward.