To the People Who Tell Me I Caused My Daughter's Disability
One of the toughest and funniest and scariest parts of writing is the feedback. When I started this journey, I was documenting everything for people who wanted to keep up with my daughter, Adelaide’s, special needs. Mostly friends and family. It branched out from there, but I was still getting free therapy from sharing her journey. I needed it.
But then feedback happened. Comments were made. I received messages. I didn’t make it a habit to respond to negative things, because I didn’t need to waste my time with complete strangers who thought I potty trained incorrectly, blasted me for not using government resources or accused me of wasting water by washing my cloth diapers. But the negative comments and messages increased as I wrote more and was shared a bit.
Then, there were comments that actually made me stop and feel emotions. Anger. Sadness. Confusion. The comments about a cure were difficult to stomach. There is no cure for polymicrogyria (PMG). Nothing. Not one thing can fix Adelaide’s brain.
But it didn’t keep people from offering a cure. Or offering a reason why they thought I had caused this. Because that is always helpful… telling a mother you think she injured her own child in the very place that can grow and nurture a defenseless human.
I was told I had caused Adelaide’s disability. Strangers began sending articles, “facts” and random statistics. I did it by eating food covered in pesticides. By eating unprotected organic food. Too much sugar. Not enough faith. Working out during my first trimester. Too much sex. Not enough vitamins.
“I sell essential oils. I just know we have an oil to cure your daughter’s brain. You may have caused it by drinking diet soda. Let me know if you want to buy the oil.”
“PMG has no cure. Adelaide’s folds in her brain cannot be changed. If your oil could cure her, I believe her neurologist would’ve given you $35 and delivered it to us himself. He loves her that much. Your essential oils can’t cure PMG.”
“The oil is actually $40. I think you should try it. You could totally be an oily mama!”
This isn’t a post about essential oils. I won’t share my opinions here, and I am asking you to also check your opinions at the door. Rather, it’s a post about feedback. And writing. I would’ve protected myself from this hurtful encounter if no one actually knew about Adelaide. Her community is very small anyway, but something I wrote about her traveled out across the Internet and placed a target on me. I placed it on myself. I wrote down my thoughts, and someone used them against me in a pretty dubious way.
I am like a pendulum — always swinging from shutting down the blog to seeking bigger opportunities. My fear of rejection and feedback makes the first option seem so attractive. But then I blast my thoughts and our story into the darkness, and one person will say thank you for words she needed at 4:00 a.m. The words I penned at 2:00 a.m. when I couldn’t sleep and couldn’t even tell you what my heart was crying.
And I don’t know the balance between writing for myself and writing for others. I just know that I need to write… no matter who is reading it. I want to stay Lyndse, the blogger behind “Little House In The City.” I like her. Whether or not she caused her daughter’s disability.
A version of this post originally appeared on Little House In The City.
The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to email@example.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.