Many years ago, when my daughter was born with a rare genetic disorder, her neurologist learned that I was a writer and asked if I would keep a journal of my experiences, something he could share with other families on a like journey, making the hard decisions that parents of badly ill children sometimes have to make.
When I began the journal, I knew that the only way it would really help other parents would be if I were completely honest. If I pretended I never had a day where I didn’t think about ending it all, then I wasn’t giving the full story. If I was going to include the joy, then I needed to include the pain, all the messy parts people tend to gloss over because they don’t want to sound discouraging.
But it is brutally hard to watch a tiny child suffer, and it’s patronizing to say “Everything is going to be all right.” Because very often it isn’t.
So I vowed I would be honest. I would say all the bad things, even about me, the tantrums I threw, the icy silences, the whimpering self-pity.
And yet. I didn’t really want other parents to read about me and think I was the worst excuse for a mother they’d ever met. But I had vowed to be honest about everything. This meant I had to be a better mother than I thought possible so that I could tell the truth and still be able to stand myself. I had to think about what mother I would be: the victim of unfair circumstances and cruel fate, or the determined advocate for my daughter? The shrill Type A who was never satisfied, or the patient mama who took joy in her daughter’s first step, even if it was two years late? The creative woman who made do with what she had and showed her daughter likewise, or the bitter shrew who railed against everything her life lacked?
Sometimes I failed. A lot of times I failed. But often, more often than I would have thought, I was the mother I wanted to be, the mother I could be proud of being. That was when I began to understand the true power of story in my life . . . our lives. By telling the story of who I was, I was able to become the person I wanted to be.
What story will you write about your life? With your life?