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?"
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!).