Wednesday, September 24, 2008

"Syndrome Kid"

Today Will's hospital called me to schedule his sleep study.

We are having a sleep study to put my mind at ease. There are many RTSweeties that have severe sleep apnea and have shown no signs of having a problem while sleeping. Apnea also runs in the family. Will snores, not loud, but I can tell when he is sleeping by the sounds that he makes. It is just to rule out apnea and to put my mind at ease. I don't think that there are any problems, I just want to make sure.


The very friendly lady called to make the appointment. She asked a few questions, I had to spell Rubinstein Taybi for her (not uncommon for me to have to do this) and she asked why genetics was ordering the test. I told her the same things that I have told you.

She said, "I always find it so interesting when we have a 'syndrome kid' come in for a test".

I was stunned.

Did she just say that??

I politely told her that my 'syndrome kid's' name was William and left it at that. My child is not a syndrome, he is a person just like everyone else, who happens to have RTS. I could not believe that a medical professional could say something so insensitive and inappropriate. It was completely uncalled for.

I think that when we go to have the test done in October, I will mention this to the person in charge of the sleep study facility.


Jessica mommy to Alex/ RTS said...

Was this at our beloved hospital(Our love for kids just keeps on growing) place. You do say something.
Alex snores a little too, I see a sleep study in our future as well. Alex's ENT is one of the top guys in the sleep study area. Dr. Mitchell.

Myssie said...

That would be the one!! I could not even believe it when she said it and then she didn't even realize that she had said something wrong when I told her that his name is William.

For sure, I am saying something!

jill jill bo bill said...

As a nurse, I apologize for her ignorance. And am sooo not defending her insensitivity, but she was actually telling you in her weird way that they apparently enjoy the challenges of working with children with rare conditions. Only she is sooo not cool like me. heh.
Thank you for the birthday wish and I will be keeping in touch! Good luck, Will, in the sleep study!

Jacqui said...

It surprises me how so many people really don't think about the words that they use. Even in the medical profession. I am slowly understanding that my role is not just as parent but as the advocate for the dignity of my child. I stand with you in declaring to the world that our Matt and Will are human beings, people, God's careful creations, who - as you put it well - happen to have RTS.

Kristi said...

OMG. You handled it better than I would have. Yes you should say something. This nurse needs to know that is offensive so she doesn't make comments like that again.. Even if she didn't know any better.

Michelle said...

I think I would have been so taken aback I wouldn't have known what to say!