this weekend we went on a fossil hunt...we went to a small town in Wyoming...about 5000 people...so not to small...but it felt very lonely...while Chad and Max were hunting for lost treasure...Maddie and I decided to go on a different adventure...small shops, farmer's markets, and good experiences for Maddie...so we dropped the boys off at the museum and me and Maddie went back to the hotel to take a shower...I went in to the continental breakfast area and this lady gives a huge smile and a gush...I assumed it was because Maddie was cute and walked in and said hi to everyone...and then there she was in my face...right there...not leaving me alone...I said hi...and got my coffee...I was letting Maddie choose a breakfast item...and not thinking much about anything...then I noticed the worker talking with a couple and them all staring at Maddie...again I was thinking they are commenting on the cuteness of my girl...no biggie...and then she did it...she walks over to me and said...isn't great how they just stay young forever?? and I smiled and thought nothing of the comment...I am not thinking Down syndrome...that is not the first thing I think about anymore...and I really am always amazed when people bring it up...I always wonder how they can tell! Maddie looks just like Maddie...not Down syndrome...anyway...the worker says my cousin is 32 years old...and I am SCREAMING in my head HERE WE GO!! I know someone "with" story...so now I am an expert! my cousin was so cute she said in her 20's she was still playing with barbies and dolls...so cute! REALLY you think that is cute...HUH you must not be the mother of that 20 year old!! WTF! then she says now in her 30's she is not as cute...small and happy but not as cute! AGAIN!!! WTF...really...I am her mother and talking about what you think is my future...my biggest fears are what you are explaining...why is it people cannot just look and smile...and just keep there mouths shut...I feel like I have come a long way in my journey of accepting being Maddie's mother...I am still in doubt of my abilities of mothering her and doing my best...I am still scared of the future and what it holds...but as of late we have been living in the now and it feels good...I did not let this ignorance get me to down...but it did make me hyper sensitive to the small town we were in...I looked up from Maddie more and noticed more...more stares...more whispers...and I just ignored them and thought it was good to show them an example of a typical 3 year old...loud, naughty, happy, and touching everything in sight...I am over the stupid...I am over people just not thinking before they speak...and then I think...was I like this...did I actually say things like this...I hope not...the eternal child label of Down syndrome makes me crazy...it is something I do not understand...in fact it makes me VERY uneasy...like I shy away of thinking about it- like I do death...Chad told me that this person probably did not not have the intervention and early education that Maddie has...that small towns in Wyoming may not have the services that our town has...I do not see Maddie as a eternal child...I see her as "typical"...I see her delays of course...but for every "hard" task she has overcome...she has sat up, crawled, walked and now she is talking and even has some words...she is starting school...she is throwing fits and learning to manipulate...I am not sure I see her any different then I do a "typical" child...I just see her doing the behaviors for longer and with more frustration that we are not understanding her wants and needs...but with Maddie I see determination...I see yearning to master a task not just do it once and move on...Maddie has a spark in her...I just do not want ignorance to blow it out...this weekend was a great weekend...time to reflect and my kids got an experience of a lifetime...Max held a stegosaurus spike...he helped dust off diplodocus bones...and he caught horny toads...Maddie swam her little heart out...danced, sang and played...like a "normal" "typical" family...nothing is different from us...I just wish others would get that...
Potty training...I am not sure Maddie is interested or even feels the sensation yet to go to the potty...she has peed in the potty one time...
the dreaded r-word...as a parent of a child born with Down syndrome I have moments when the r-word brings on a panic attack...I become ang...
I so wish others would get it too...it drives me nuts. Who wants a child to never grow up? That is certainly not our goal here and does not make me smile thinking that is as good as it gets. No, because I know there is more and someday our kids will show them!
ReplyDeleteUggh...I cannot stand those moments! People really don't get it. It really hurts my heart. Thanks for sharing this.
ReplyDeleteReally? I just don't know why people think they need to stare and whisper. I hate that! I hate going about my business and then happening to glance up catch a ton of people staring at my son like he is a freak...And then all they do is give me a sad sympathetic smile that I just want to smack off their faces!
ReplyDeleteI too despise the Eternal Child Label of Ds...It's not cute and the last thing it gives me is a warm fuzzy feeling! *sigh*
I'm glad you shared this though Kim, makes me feel I am not the only person completely annoyed by stupid people!
I'm so thankful I haven't had that with Arina yet! I've had some bonehead comments about Jax, but that wasn't really so much DS related as medically fragile related. I have had some dumb adults sit and stare like their eyeballs are going to fall out of their heads. I like to think they are staring because she's so flipping cute. I only get positive comments and feedback with her. I really think people think they can relate and are helping, but really aren't!! The whispering, man I just walk up to them and ask if they need anything!! Idiots!
ReplyDeleteI hate to be the bearer of bad news but... it never ends. Beth and I were at the grocery store last night. The same store we've shopped at for more than 11 years and I saw someone look up and just stare. Beth was behind me and I thought, 'Oh yea. Probably staring at Beth. I wonder how often they see someone with Down Syndrome.'
ReplyDeleteIt doesn't bother me anymore but it does still surprise me.
I hate comments like this too. I know people are trying to be friendly and connect with us and our kids, but I really people would just smile and move on. When it's people like this they already think they know everything about Ds and you can't even educate them.
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