Adelaide has hypotonia. It was the first word I recognized from our useless first neurologist. He muttered it under his breath, scribbled it on a napkin, said she wasn’t that far behind, and told us we shouldn’t even start therapy until she was at least 15 months old. The man scribbled our visit notes on a napkin. Unreal. And then tried to charge us $491.
But I saw the word hypotonia and clung to it. The nurse anesthetist had said the same word just days before when he told us her MRI would be sedated and she would need a breathing tube. A breathing tube? “Sorry, why does she need a breathing tube?” “Well, because she’s hypotonic, her airway will collapse under the anesthesia. Her muscles can’t handle the weight of her head.” They ended up just holding her head and using a mask, but were ready to insert a tube if she needed it. I memorized that word ‘hypotonic’ and looked it up as soon as we were home.
I was disappointed to learn that I already knew it. Our pediatrician had used layman terms with me: low muscle tone. But when I kept hearing professionals say ‘hypotonia’ I took notice, and did the only thing I could do as we waited for our second neurological opinion. I joined a Facebook group. And I met my first Facebook special needs friend.
Every special needs mom has them. These women who start as profile pictures. But then they start answering your questions on a page. And then they send you private messages. And then you become friends on Facebook. Years go by as you celebrate one another’s milestones and grieve one another’s tough days.
Kelly from New Jersey was my first. Adelaide and Cam both had hypotonia. They both had big brothers. They were both amazing fighters. Kelly and I connected right away and were Facebook friends in just a matter of months. She was there, a private message away, when we got our polymicrogyria diagnosis months later. I found out I was pregnant. Then she found out she was pregnant. We both gave our hypotonic daughters sweet baby sisters. She’s been there through insurance nightmares and genetics dead-ends and encouraging me on the days I want to quit. Quit, what? Everything.
I took a photo just days before we learned that Adelaide had serious issues. I was trying to prop her up on the couch. Make it seem like she was able to sit. Not actually lying, but being as opaque as humanly possible. Hiding the growing fear that my baby wasn’t just slow to sit. No, she couldn’t roll or hold her head up or stand on my lap. Almost nine months old, and she still had the strength of a small baby. And I propped her up. And took a dozen photos before getting one that looked ‘normal’ enough for Facebook. I wasn’t yet in any groups. I hadn’t met Kelly. I was still in the dark about everything. And I posted a photo that not one person realized was staged. She fell over four times. And I hid it all.
After her diagnosis, I continued to prop her. But everyone knew. I had been blogging for almost a year. Still learning to share my heart on Little House, but at least able to be transparent on Facebook. She fell once and I took only two shots.
In one year, I had mastered the Hypotonia Prop. This skill you never want, but learn quickly. This ability to feign something for just a moment. But your fellow Hypotonia Moms know it. They know she still can’t sit. They know how to use that couch groove. They know to say “She’ll sit someday. I know it. Cam is always proving doctors wrong.” And that’s why I laugh when people say Facebook is a waste of time. Because it’s often my lifeline. Connecting me to anchors all over the country. Starting with one in New Jersey.