The Comments

If you're looking for some light stories about how Lilly is manipulating her parents or discovering some new skill, you may want to scroll down to the next entry. (And if you don't like video's, then scroll down even more.) But there's something that I want to talk about.

(Stepping onto my soapbox.)

The comments. When people say something, probably unintentionally, trying to sound nice or supportive, but it's not. And me not knowing how to react to hearing certain things. So usually I get quiet, and then later think of some brilliant reply (oh who am I kidding, not brilliant, but just any reply). I'm not particularly judging the people who have said these things, as sometimes people stick their foot in their mouth without meaning to, or don't realize - so here I am just trying to raise some awareness. And it's not like I've been stewing over these comments again and again in my head, but they do stick with me in the back of my mind. So I'd like to share. Again, feel free to keep skip this entry for some more upbeat light material way down below.

1. She's doing so well for a child with Down syndrome. No, she's doing well for a princess. Lots of kids with DS are doing well. And why are you evaluating how she's doing anyways? Do you look at every child you meet and assess "how they're doing"? And if she wasn't doing as "well" would that be a problem?
   
2. I couldn't do what you're doing. You couldn't do what - decide with your husband to get pregnant and actually have the child no matter what? And raise your little girl and love her to pieces and take her to Disney World repeatedly? And watch Annie 3 times a day? Ok, maybe I'll give you that one. But here's an interesting article you should read titled "I'm not a saint, just a parent." http://www.timesonline.co.uk/tol/life_and_style/article633433.ece


3. (During pregnancy) Are you sure you want to have the baby? She might have heart problems/need glasses/be uncute. Sure, every child might have medical problems. And judging from my pre-lasik blindness and Jon's childhood lazy eye, it would be a miracle if she doesn't need glasses! (BTW she doesn't!) And as for being uncute... seriously, she's my child. Did you even question it? And furthermore, if any of the above were true, that would be fine - because she's my child.


4. (At 2 weeks old by a nurse!) If she's lucky, when she grows up she can work in a factory someday. Seriously? If she's lucky she can go to the spa and the beach every day with her mama. If she's unlucky maybe she'll be a brain surgeon like her daddy. But if she's really lucky she will find something that she loves to do when she grows up, no matter what it is.


5. Why are you trying to teach her things? It's not like it makes a difference. (By a therapist!) Well I got my fancy pants $100,000 law degree from a top 20 law school, not like it makes a difference in my current... (I'll stop there)... Besides, Lilly is an excellent learner, has an incredible memory, and picks up so many things easily. Do I even need to defend this one?


6. She looks so alert! (In a shocked tone of voice.) Well yes, that's what happens when she's awake.


7. (After doing something silly or stupid they say) "I'm so retarded." Oh I hate this one the most. And the most conflicted feelings. I guess my general response is, it's the most offensive comment you could say around me. Period. But the conflicting feelings are - Are you saying retarded, in the fact that it's a negative thing to be? Because we've met some wonderful people, who are technically mentally retarded, and are great people. And will Lilly be mentally retarded? I'm not sure. I'm not even sure that I'd necessarily wish she wouldn't be - because I love her completely no matter what, however God made her. And if she is, I'm sure she'd still outwit her parents. But who's to say - she's 2. Anyways, just don't say it.


8. Isn't she sweet! (In a patronizing voice.) I love when she gets compliments, and love when people call her sweet, but this is actually when they say it like that's the only redeeming quality about her. Like that's the only thing she is or could be. She's so many other things as well - bright, funny, adorable, a handful, a master manipulator, etc.


9. I knew a kid once with DS (usually about 30 years ago). He a) tried to kiss me and it was so gross! b) went to my church and was so sweet (in that tone) c) went to my school and kids were nice to him (wow they were even NICE to him?!) OR d) died. I mean, it's great that you knew someone. But when you tell me negative things he did, or if you didn't really know him well, it really isn't pertinent to the conversation. Or even better, I knew someone who was pregnant with a kid with DS (or some other thing) and they aborted. Oh, how lovely. Thanks for sharing.
10. Is she high functioning? I'm not sure what functions 2 year olds typically accomplish, but she poops on the potty (when bribed with chocolate), watches Annie & Elmo obsessively, and loves when we sing and dance. So I guess she's "high functioning" whatever that means. She's not working at a factory yet though, if that's what you're asking!

In general, the comments that annoy me are any judgmental statements about my daughter or people with DS as a whole. She is first and foremost just a child. I mean, a princess. When your own little angel was born, did you look at them and say "One day she may go to medical school, but there's a strong chance that she'll have an alcohol or drug problem, have a kid out of wedlock, and go through 4 divorces." (Not that there's anything wrong with that!) But I'm just saying, with Lilly, when she was born, so many people had "something to say" on what she'd accomplish in her life and what her value was as a person. And at the time we were just trying to accomplish getting her diaper on straight without her pooping out the side. Or aquiring boyfriends (Scarlett O'Hara is her hero, after the princesses of course). Or now, she's just living the life of a toddler (and what a fun little life it is!). What other kids are constantly assessed on their every characteristic and milestone? I don't hear you say about the smart kid: "Yeah, he's so smart but we really need to work on his social skills so that down the road he's not an outcast and can eventually get into a fraternity in college."

So what is my point? Take my daughter (and every other child) at face value. No prejudgments based on the fact that they have enhanced chromosomes, or that they are born a twin or that they have blonde hair, or that they are a different ethnic background than your own. Kids are just kids. And it's not that I'm constantly dwelling on the subject, but I just thought it needed to be said.

(Stepping down off my soapbox.)

But of course, anyone reading this blog regularly already knows what proud parents we are, and that we would all be lucky enough to be as cool as Lilly is. But just thought I'd say these things for all the people who aren't reading so they know. So I guess, um, well - just spread the news ok?