I only remember about blogging when I need to unload some stuff and I’m not sure where to go. Sometimes we all need to spill, right?
My beautiful, vivacious, incredibly strong toddler was recently diagnosed with Alopecia Areata. It has been two weeks since our diagnosis and it has progressed quite a bit. Every few days, she has new bald spots. Most start as dime-size spots, maybe some thinning around the edges. Within two weeks, we have seen those initial spots grow to around 2″ or larger.
Nothing we did caused this. It wasn’t something she ate, it wasn’t a product we used, it wasn’t due to stress or trauma. It just happened. The thing with Alopecia Areata is that there’s absolutely no predicting what will happen. The loss could stop at any point or progress as far as complete hair loss across her body. Her hair can grow back at any point. It can cycle between growth and loss. Either way, we just won’t know. Its an autoimmune disease with no cure and a handful of treatments that *might* work. My girl is young and tiny though, so those treatments are a bit much on her body right now. We’re holding off. That means we are just going to take it as it goes. We’re ok with that. She is ok with that. We’re positive and we know that she’s just going to be the same kickass kid she’s always been, just with a bit less hair. It has been picking up speed though.
I’ve been at an impasse as to whether or not I should discuss it across social media. Yesterday, I posted a picture of her with her hair pulled back with a headband. Maybe people chalked it up to a toddler mishap with a pair of scissors. Maybe they aren’t quite sure what to say yet. Maybe it really isn’t obvious to outside observers.She’s completely healthy, despite it being an autoimmune disease. Alopecia doesn’t hurt. It doesn’t itch or sting or burn. It has no effect on the rest of her body systems. We are so, so lucky that this diagnosis means we will hold our baby every day and watch her grow up and live a full life. Other parents aren’t so fortunate. My heart breaks for them. So please, if anything, know what I know.
This still doesn’t mean everyone gets it. For the most part, that’s ok. We learned because we had to, not everyone is working from the same knowledge base. I’m ok with questions. I’m not ok with assumptions. I am dreading the day someone makes a comment about being sorry that she is dying because she is bald and they assume she has cancer. I’m terrified of the time someone makes a negative comment about her looks because of balding and scraggly patches of hair that she is triumphantly rocking. Maybe with glitter. I don’t want to see my baby’s confidence break down because someone makes an insensitive comment. That is what terrifies me.
So please, please don’t treat her like she is sick. Don’t act as if she is fragile. Don’t be afraid to look at her, she’ll even tell you, “Alopecia takes my hair away. Its ok!” If you want, ask me about her hair loss. Ask for details about alopecia. Tell her she looks amazing. Challenge her to a dance off. Be full of love and optimism. She needs it. I need it.