It was a bright, hot mid-July day, and summer vacation was in full swing. For the first time ever, I had nearly forty hours a week of childcare lined up, and I was finally feeling the load of taking care of a disabled child lighten. Asher had just turned six. I was feeling in control and relatively free. My part-time job was tapering down, and I found myself with the elusive luxury of time. In that opportunity, I reached out to an old friend. We talked a mile a minute while we caught up with each other’s lives when she joked that she should write a book about her dating life that had gone horribly awry. I laughed along with her but something in my brain was ignited. “I should write a book too!” I responded, and I was serious.
As soon as I got off the phone, I sat down at my desk and wrote what came to my mind. And what came to my mind was the lowest point of my entire life. And as I wrote it, the weight of the trauma lightened just slightly, and an inkling of joy and meaning sprang from the depths of my hurt. I only had about twenty minutes to write, and what transpired was just one page, but it was a powerful page. It was my prologue. The death of one life and the start of another.
After I finished the prologue, it was like my body had a compulsion to continue to write. I didn’t know everything that was going to come out through my fingertips, I just knew the book was written, even when I only had a few hundred words, I knew it was done. There was no way I could stop. At one point I even had a full-time job for a few months and quit partially because I needed to focus on writing. My story needed to be told because no one would tell it for me and because too many people needed to hear it, to feel it, like I did.
As I wrote, I was certain I was almost done with the book at around twenty thousand words, but it was just the start. I continued to write and before I knew it, I had nearly eighty thousand words and a year had passed. I couldn’t believe what I had created. My life in words. It was a weird feeling because as soon as I finished, a blanket of peace wrapped around me, and I felt safe. Changed. The next edits I made were to change the names, and once I did that, something bizarre happened. Magical. It left me.
The story was no longer mine. It became yours. The mom with a disabled child. The special education teacher. The medical professional working with disabled children and their families. The pediatric therapist. The family that doesn’t know how to help their cousin with a disabled child. The world that doesn’t understand the life of a family with a disabled child. I can’t wait to release my story to the world, because I know it’s a story people need to hear and because it’s not mine to keep. It was yours. It was always yours.
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