Wednesday, May 21, 2014

"I'm sorry" and other annoying phrases.

Last week we went to Baltimore for a mini vacation, watched the Tigers whoop on the Orioles, and saw the National Aquarium (I highly recommend!).

While there we received the usual compliments about how cute Jeremy is (of course!) and almost always were asked, "how old is he?" To which we respond, "One." Since about 8 months on I have always been met with a questioning look and that head tilt (!) which I know translates to, "Why is he so little for his age?" If I am not asked that question I ignore the look and go about our business. If I am asked why, then I will almost always respond that he is small in large part because he has Down syndrome, sometimes the conversation stops there and sometimes the other person tells me a story about someone in their life who is touched by Down syndrome in some way (a cousin, niece, nephew etc.). My least favorite response that makes the Mama Bear in me want to throat punch someone (usually the other person) is, "I'm sorry."

The nice, polite person in me says, "Oh, don't be sorry, he is so awesome and you are lucky to have had the chance to meet him because this kid is going to rock this extra chromosome like its his full time job!"

The I-want-to-throat-punch-you-right-now person in me thinks, "Why are you sorry? Sorry for the 'burden' that must have been bestowed upon us? Sorry because we'll live a life full of stares and finger points? Sorry that we must be held back in some way because his special needs will always be at the front? Sorry because he must be some sort of invalid?"
Another annoying phrase? It almost always starts with "Well you know people with Down syndrome..." and can end with any number of things. The nice person in me just smiles and nods. It is most often easier to just agree with these folks because I don't have the extra energy to spend my days correcting everyone for their lack of knowledge. Realistically, unless they are personally in touch with someone from our Down syndrome community, they have no clue about these babies.

The I-want-to-throat-punch-you-right-now person in me thinks, "Really Dr. Down syndrome, please tell me more about your vast knowledge on the subject of Down syndrome, I'm intrigued." What it really boils down to is why place a limit on my child? "Well you know people with Down syndrome rarely go to college and live fully productive lives." Me, "Really? I can name 3 people off the top of my head who recently have been accepted to very good colleges, please tell me more about how my child may not be in this category?"

My least favorite comment of all time occurred almost a year ago, "Do you even have a clue how expensive a child with Down syndrome is going to be?" There was no nice person in me for my reply.

The I-want-to-throat-punch-you-right-now person in me replied, "Expensive? You think when we had any of our children we thought 'oh yes this one will be the cheap-to-have-baby and this one will be the expensive-to-maintain-baby,' we're set now!' Really? Please tell me what are we supposed to do with our baby who is apparently too expensive for us, give him back? (By the way can you please come budget our finances since you apparently know sooooo much about them!)

Yes Jeremy has racked up quite a bill medically, and maybe even in fuel. We have been extremely fortunate that our medical insurance has covered almost everything (at least most of the very big ticket things). To date we have paid $3,026.00 and-some-change that was not covered through our insurance. We are okay with that.

I guess my point is... unless you really know what you are talking about shut your mouth and just make googly eyes and "ahh" over how cute he is and agree that the hair on the left side of his head looks like he's growing a throwback to Flock of Seagulls (you know that one blonde guy!).


  1. I don't blame you for your feelings whatsoever!!! I too have a child with Down syndrome, Mia, and she will be 2 on Halloween. I have had those moments too, and sometimes its easier to walk away, biting tongue, but others, let 'em have it. If we don't spread the CORRECT information, it makes it worse!!! I think Jeremy is one of the most adorable children I have seen... and so happy for your family that you are lucky enough to be the ones to raise him. God Bless you and your family! And "good on ya" for standing up to the ignorant!!!! Please feel free to follow my blog All the best.