"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Tuesday, August 11, 2009

I never fails...

Whenever we go anyplace, Carly is normally with us. Rarely do we leave her behind. Partly, because I don't feel anyone can watch her as closely and as well as I can. Ashleigh is fully capable, but still...no one cares for her better than I do. My mom and dad do keep her some, but honestly, they are now 71 yrs old. It's hard for them to keep up with her. As she is pretty much NON STOP! Which we are very thankful for by the way. She is a busy little girl without a doubt. Another reason that we take her with us, is simple. She is our little girl and she goes where we go. And she LOVES to go.

It never fails. No matter where we are. Be it the park, grocery store, the mall, out to eat or even on a weekend getaway. People are drawn to her. It just never fails! Most of the time, it doesn't bother us. Some people comment on how cute she is. To that, we say "thank you". Some people ask her age; and then nearly faint when we tell them she is 7! Every once in a while, I offer up the facts to her size..Down syndrome., along with congenital heart defect and the fact that she endured 26 long agonizing months of chemotherapy. Some are thrown aback, some are not. Some are very interested after hearing about it. Some, wish they never would have asked. Like maybe they could catch something from her.

It's interesting to us, how some people will just look at her and smile. Some people roll their eyes at her. Most of the time it's older ladies who do the eye rolling. I must say, that really blows my mind. I then realize, that back in their day, a child like Carly, who was born with Down syndrome., was tossed aside. Kept locked away in a room so no one would see them. Shut off from society. Left with little or no love. I really can't come up with another reason for these older women to give us or Carly nasty looks. Carly is very well behaved. She rarely acts up in public. Now at home, well - that's an entirely different story!

Something else that never fails. The complete strangers who go out of their way to ask, "is she Downs"? I always reply with this, "yes, she is a child with Down syndrome". Always. That's the way I choose to reply. They will then tell us of their sister, brother, aunt, uncle, cousin etc...who has Down syndrome. It's then quickly followed by, "aren't they the most loving people"? I'm telling you, IT NEVER FAILS! Each time someone approaches us regarding Carly and Down syndrome., they always throw in that stereotype of "so loving".

While we were on our little weekend get away to Splash Universe. We were heading back to our hotel room when approached by a very friendly guy. I noticed right away that he was smiling at Carly. I mean, he was SMILING! As we got closer to him, he did it...he asked the question. I of course gave him my reply. Then he told us, his sister had a boy with Downs. Let me tell you, I can NOT stand it when people say Downs. It's NOT Downs. It is Down syndrome. Sheesh!
He then went on just as I knew he would. Talking about how loving these people are. This time, we said, "well, she's loving when she wants to be, but she is also the most stubborn, strong willed child God ever put on this earth". To that, the man really didn't know what to say. If I'm not mistaken, I believe his jaw dropped open.

He then went on to tell us how the school mainstreamed his nephew. And that he is now 18 and is a sophomore in High School. He acted like it was really something to mainstream. Little does he know..that is the case with many of our Down syndrome kiddos. I of course told him that Carly is also mainstreamed and will be going into 1rst grade in the fall.

Don't get me wrong. This guy was not obnoxious at all. He was really quite friendly. We were friendly back. Talked a little and then headed on our way. As we got to our room, Paul finally spoke. These were his words, "why do people think kids who are born with Down syndrome are so much different than anyone else"? Of course, I had no answer to that question. He then said, "can't people see that Carly is a child like every other child, that she really isn't all that different"? We talked a little about it, but then quickly turned our attention back to Carly and her playful, silly, little self.

No matter where we go. What we are doing. I never fails. Someone knows someone who was born with Down syndrome. Or Down's as most call it. Honestly, I appreciate those people who take the time to ask us questions about Carly. The one's who bother me, are the older ladies who just stare at us like we have a freak for a side kick.

Regardless of what anyone thinks regarding Down syndrome. Our love for Carly will never fail. We are so blessed to have been given this very precious little girl. We are thankful for her every single day.


Heidi said...

I loved this post! It is so interesting how people respond to Carly. I have experienced some of the "looks" with Joel but only had one person ask me if he had Down syndrome.

I too just HATE it when people refer to people with Down syndrome as Downs. It really irritates me! I also get this comment a lot with Joel - "he's so good and happy". I usually say - "oh you haven't seen him when he doesn't get what he wants".

It really amazes me how ignorant people are but at the same time I don't think I would be any better if I didn't have Joel in my life.

Carly is such a sweet little girl and I'm so glad you are able to see her as the blessing she really is!

Jeana said...

Thanks for this post, I don't know what I'll do if I get the eye rolls and crusties at my daughter. I'm afraid I might snap! Hopefully I can keep it together but I'll be sure to put people in their place.

Wayne and I were just talking about this the other day. In the hospital medical professionals are always referring to Kaelyn as a Down's baby and it drives us nuts. If I'm not mistaken there are 46 other chromosomes that make up our children, and like your husband said they are not that different from other children. They are OUR children, comprised of OUR DNA, just like every other child...they are not THESE people. Yish, I guess I've needed to get that off my back. I know I'm at the very beginning of this journey and I've got a lot of learning to do. Thanks for the insight.

Adrienne said...

It is funny, when we found out that Bennett would have DS while I was pregant, so many people said how happy and loving "Downs" kids are. And yes I hate the sterotype and how they would say "Downs" but I remember reading "Bridget's Light" blog and how her parents thought, ya know if that's the sterotype our kids get then we'll take it, it could be a lot worse. Being happy and loving is great and I know they are not always like that but at least they are not sterotyped as something bad. And for those old ladies that role their eyes- I would just brush it off, some older people can be like that, they say what's on their mind and they don't care or think they are being rude, I think they feel like they've been on the world long enough and they can do things like that. It is annoying though!

Sara P said...

i love the post today, i can stand people saying Downs, even people i would consider to be highly educated will say it, i tried to explain it to a few of my co-workers that max is a baby first, who just happens to have Down Syndrome and they still didn't understand what the difference was... i felt like am i just being over sensitive, now i know im not, thanks :)

Kristin said...

Oh yeah - that "Downs" thing really bugs me too, ESPECIALLY from medical professionals! Another I "love", is when people we know look at our 4 month old and say something to the effect of "he doesn't look very 'Downs' - do you know how affected he'll be?". I usually reply with, "Uh, you either have the extra chromosome or you don't. Like you can't be a little bit pregnant!"

Ria said...

I love this post! It also bothers me when people say "Downs". And when they ask if Matthew has a mild case or not...as if likening Down syndrome to the flu. Sheesh. But I just refrain from making snappy comments and try to educate with the way I answer, sorta like you saying "Yes, he is a child with Down syndrome."

Lacey said...

Sorry, I say downs all the time. Don't get me wrong, I never use downs instead of his name, because he is Jaxson. But downs is just a way to shorten down syndrome, like a nickname. I can't be to crazy about words people say, I have to much other stuff to worry about.
One thing I really hate is when kids ask their moms why Jax has tubes and their like, sshh. Like I'm going to get mad. I would so much rather have people come up and talk to me than stare or try to shut up a curious child.

JennyH said...

I can't stand "downs" either. My mom says it and it drives me up the wall. I always say Down syndrome hoping others will get the hint.

I almost feel sorry for my 5 year old b/c when we go out Max is the one who gets attention and all the "hi- how ya doing"

Great post.