Hi, I am a 32 year old Fibrous Dysplasia presenting with a bone tumor in the posterior 8th rib. How horrible does that sound? Or you could just call me “Andrea.” My friends call me “Andee.” Because I am not a diagnosis. I never have been. My kids won’t ever be. Your kids won’t be either. Not if I have anything to say about it.
Last year I sat quietly waiting for my latest MRI while the radiologist labeled me by my diagnosis. He never even said my name. Gross. But I probably needed it. Because it is easy for me to forget that your child often gets called “Tube fed,” or “Cerebral Palsy,” or “Autistic.” So, I was reminded, by a rude doctor….who better to teach me a lesson, right?
I do need to know your child’s diagnosis. I need to know if she has low muscle tone. I need to know if he has hydrocephaly. I need to know if they are missing a chromosome. And I am going to be really honest here, but mostly because insurance wants me to write it in a report.
When I write those boring reports. The ones insurance need me to write. I will still use your child’s name. Ellie will not be Down Syndrome. She will be Ellie, who has been diagnosed with Down Syndrome. James will not be autistic. He will be James, who has a diagnosis of autism. Because your child is a child first.
Kids being kids.
I need to know what is actually important. I need to know if your child likes Anna or Elsa better. I need to know what your child’s favorite song is, if they have a lovie, if pineapple makes them gag, if they are too cool for Curious George, if they get over stimulated by too much noise, who their best friend is, and if they prefer the blue car or the yellow car. These are the important things.
And I need to know important things about you too. I need to know if you have someone to talk to. I need to know if you feel supported. I need to know if you are scared. (But what mom isn’t?) I need to know if I am pushing you and your little one too hard. I need to know if you will let me be on your team. Because being a parent is hard, and picking good teammates is clutch.
When it comes to your child’s therapy. I will treat your child. I will make sure that I am not treating Down Syndrome or Autism, but that I am treating Amy or Caden. The kids. Not the diagnosis.
Parenting, AKA Superheroing