You'd think after 6 years I'd learn to grow some thick skin and not let things like what was said bother me, but this one just cut me to the core.
I've heard "suffers from Down syndrome" enough to become mostly immune to that ... although it does still irk me because Kayla is not 'suffering.'
But this one was something else, the commenter said: "...my belief that Down's is a cruel and unusual sentence to visit on a child."
Whoa!
Did I really just read that? Cruel and unusual?
Then there was this: "Far more Down's children live miserable, suffering lives than these individuals want you to believe. Viewing the lives of affected children, and simple education tells me that I could never force a child to endure what they would should they be born with Down's."
Just what am I 'forcing' Kayla to 'endure' is what I'd like to know. Cause from my view I'm forcing her to endure a life filled with love, respect, support, friendship, guidance, encouragement, experiences, fun, education, inclusion in her family, school, community (as it should be)...and that doesn't sound 'miserable' to me at all.
I know there are a lot of people out there who have very negative opinions of Down syndrome; I guess I haven't experienced it first hand, and I certainly didn't realize the depth of some of those opinions.
I look at Kayla and just wish I could shelter her from this cruel, cruel world. She has every right, no, she deserves to live her life like everyone else and not have people look at her like she should never have been born.
Meet Kayla, my beautiful daughter who has Down syndrome:
She likes dressing up as a princess, like just about every other 6 yr old girl out there. She's happy. She's not miserable or suffering.
She just is...living her life...the way she was meant to be.
50 comments:
Oh Michelle, I believe you are absolutely giving Kayla a beautiful life. I think that person was an ignorant idiot. Many, many years ago I volunteered at a school for mentally slower kids, many of whom had Down syndrome. One thing that struck me then, and it's been true of any person with DS that I've ever met, is that they seem exactly like any other person you might meet--People with DS are just that, people. I believe Kayla has a wonderful life, is very happy, and is definitely not suffering. What a ridiculous, hurtful thing for someone to say. I hope you can let that person's ignorance not affect you.
Seems to me anyone commenting and using the slang "Down's" the way he or she did isn't educated about Down syndrome anyway. Their opinions aren't even valid, IMO.
You, and I, and everyone else who loves someone with Down syndrome understands that it is not the "quantity" of life -- meaning how much will one person accomplish or consume in a lifetime -- it is truly the quality of life.
Because loving a person with Down syndrome had taught me to really look at what is important in my life.
Like Kayla, Gabriel is living a full life, (although there are times when he has to *endure* his parents! LOL!)and we face the challenges that SOCIETY PLACES ON HIM every day.
Commenters like the ones you've mentioned are lost souls, IMO. And I'm not talking one bit about religion. I really think that they feel safe behind their "Enter" button on their keyboards. They can flippantly say what they want because they are anonymous.
You know, if the tables were turned, and there were more people with Down syndrome than typical folk, I bet you'd never ever read a malicious or mean comment on a blog, news story, video, etc.
Now that is the kind of life our children endure...:)
I'm so sorry. People can be mean and hurtful. They also have to realize that just because they feel a certain way about it, doesn't mean that they need to share it. Perhaps they could be open minded a bit and go enjoy a day with a child happily living their life with Down Syndrome.
You've taken it as something to educate about. You are doing a great job!
Did you comment on the post? (No, you don't have to answer.)
Unbelievable. I can't believe how some people can be so completely ignorant, clueless, and just plain stupid.
You are doing an amazing job as Kayla's mother and we all wish we could shelter our children from such a cruel world. I look at my grandbabies and I worry about the world that will be theirs. Especially with such cruel and unusual people as that commenter.
You know I hear you on this one. Ignorance and prejudice are ugly, ugly things. So are lies.
We know the truth. We live with it. And what was on that blog, well, it just wasn't the truth.
I am so sorry, people can be cruel can't they but I really feel sorry for them for having such an outlook and thinking we need to have a perfect race here on earth and no rooms for struggles and difficulties in life. I know so many people who don't have a disibility and have a very unhappy life and have many struggles. Life is what you make it whether you have a disibility or not. Sounds like these people have really missed the boat on what life is all about.
I haven't experienced the cruel comments from anyone as of yet. I'm sure one day I will. I have been told/commented on, that "Downs kids aren't the only ones who are mistreated and referred to as creatures". Well...that may be, but I can not comment to them regarding their child's disability..I can only comment on what I know.
I'm blown away by the things that people say. People are oh so clueless.
Hi, it's me again...I just saw this signature line used by a poster on my favorite house and home forum...It says:
"In life, think of mean people like sandpaper. They may scratch you and hurt you, but in the end, you come out smooth and polished and the mean person is just worn and ugly."
I hope to keep this in mind for the commentors who are malicious opposed to ignorant. ;)
WHAT?! It's those kind of people that I really, really wish would birth a child with DS. Nothing else would open their eyes to the truth.
It really is ignorance that someone should say such a thing. Michelle, I think Kayla has a fabulous and beautiful life and I know I've said it before but your blog has exposed ignorant myths and understandings and inspired many. I don't even think 'down syndrome' anymore when I see your blog - I see you all as a regular family, gorgeous at that :-)
Oh I have deleted my Captured Reflection blog and have started a new one (which I can post my photos too as well) the link is:
http://indefatigable.webs.com/
Very well said! I agree that we should have thick skin but it doesn't ever seem to be thick enough.
I got tears in my eyes reading your post... I would LOVE to shield Whitney (and Anne too) from the cruel people and things in this world. I love what you had to say in this post - and Kayla is the most beautiful 6 year old princess around!!!!!!
Amen, Michelle. Amen.
I guess what I don't understand when people say "my belief that Down's is a cruel and unusual sentence to visit on a child"...is,was there another option that I wasn't aware of?I mean did God descend down and say.."you have a choice of whether your child will have _______ disability"?Or is the better option supposed to be no life at all?It seems it comes down to America and their standards of what is beautiful and what is not...because we all know (sarcasm) 'tis better to be dead than anything other than perfect.
Oh, Michelle :(
People are just.....ugh.
Your girl is FABULOUS! and it's very obvious that she is in no way, shape, or form suffering from anything (well, maybe, except missing her daddy!). That will be over soon enough.
((((HUGS))))
I'm so sorry for the hurtful comments, Michelle. It's my hope that people will see Kayla, whether on your blog or in real life, and realize that their assumptions are quite wrong.
It is so sad that people feel that way. They don't even know what they are missing out on. Too bad for them. I wouldn't trade Mattie for anything in the world. Kayla is absolutely adorable!
wow! I'm so glad that Kayla isn't suffering because she sure looks likes she is having a great time with you, JOe and Lucas!
People are ridiculous, what about those couples that sue their doctor when they end up giving birth to babies with Down syndrome even though the prenatal screening comes back negative.
I don't understand why someone would say something like that about a child! Of course Kayla isn't suffering, she's living just like all children. Having fun, playing, loving her little brother, enjoying life.
Wow Michelle. Those comments are just horrific! I shouldn't be surprised, I encounter the same kinds of comments surrounding food allergies, but they never cease to amaze me.
There are many horrible diseases/conditions out there that DO leave kids and people suffering daily, but Downs is not one and I've never viewed Downs that way.
It's so hard b/c we know we can't protect our kids from things like this always as much as we want to. I find it so sad that people must react so cruelly just because of a lack of knowledge and understanding.
The end of your post brought tears to my eyes. Kayla is such a special little girl and so sweet. She's so very blessed too!
As the grandmother to that most beautiful little girl I'd like to wring the neck of that, insert nasty word here!!! How dare she make such stupid, uneducated comments!!! I'm so angry that I could just spit nails. How can anyone make such cruel statements. My granddaughter is not suffering! She is one of the happiest, well loved child I know. Okay I'm going to shut up now because I'm just to upset to put my thoughts down to where they'd make any sense.
dumb dumb people.
they do not know what they are missing.
Many hugs to you and yours.
tell me who it was... I'll stand in line to slap them.
let me tell you once again... you have a beautiful daughter!
Really people like this don't even deserve a comment but hopefully they will check on a few more blogs and see how miserable all of the other children are too~ha!....I know Kayla look sterrible miserably in her pretty princess dress (totally kidding!) These people need to get real
That is just soooooo frustrating! You want so badly to tell this person otherwise, but really can't. And even if you could try, you'd never get through to them. It's so sad that they'll just never really know.
Very well written! She is a beautiful princess!
no one can look at that face and not know that her life is full of love and joy. Some people are freaking morons.
I'm really sorry that people are so ignorant. As an adoptive SN mother, I can empathize. I feel blessed to be the lucky mom who has the privilege of parenting my children! Keep your chin up!
...and beautiful she certainly is! I know there are so many people out there who actually believe exactly what that clueless commenter wrote. It makes me so angry to think of them and their ignorance, because that's all one can put it down to. They are the one's who are in a sadder place in life and have no idea what great fulfillment our children bring to our lives. Nor do they have a clue that children with DS are just as happy as any other child, they look forward to the same experiences, they do the same things and that they are more alike than different, its time people realised that. It's obvious that these people who so proudly comment have no experience with nor are they educated about DS. In that case they should just keep their comments to themselves.
She is a beautiful little girl who probably has a better life than a lot of children without ds. People sometimes have NO clue as to what they are saying and how hurtful it can be. Sorry you had to go through this. I haven't had any negative comments yet so I am not sure how I will deal with them. I would gather that it definately would bother me.
That commenter is just ignorant. Kayla is beautiful, and has a fabulous life. One can only hope that person sees your blog and how wrong they were!
I think Kayla is perfect and wonderful and having an amazing life. It's sad that some people are so ignorant; they're really missing out on the good stuff, aren't they??
Great post! It is amazing that people can have such views and see them as "right". It saddens me that so many of our compassionate views are getting turned upside down.
WOW!! Kayla is a beautiful princess!!!!!
Michelle, I couldn't have said it better. Thank you for sharing. I experienced something very hurtful in church - they believed it was a curse. People can be cruel, and I'm sorry you had to endure reading ignorance. However, your Kayla is the happiest little girl I've seen.
Stay the course my friend. We're in this together. :)
xox
AHHH - that is so last century!
God help that person to be enlightened soon.
Reading something like that makes me glad the on-line community is usually so positive and real.
Take care!
First off, I am sick right now, and I am hoping I am making sense on these meds!
There is some sick people out there. My uncle and my hubby's first cousin were born with Down's. I have heard things myself, and will not repeat. I still tremble when I remember one person's statement and sadly they are a family member, who I havent talked to in years due to his stupidity. I do not understand people. Usually someone that speaks ill of anyone is totally ignorant about what they are talking about. No one would say this about your daughter and know your daughter. Your daughter does not suffer, and you and your family does not suffer. She is a gift. God made her life.
Hi Michelle - I hope you don't mind - but I quoted you in my post today. It seemed too important not to do it.
Carol
That was very well put. People are so judgmental and inconsiderate these days, so sad.
All I can say is we need to pray for the ignorant that their eyes may be opened to the truth.
Still praying for your sweet daddy and for your hubby!
Kayla is a blessing and a joy to not only you but all that read about her. Same goes for Lucas!
Love,
Amy Stribling
Michelle- I'm sorry you had to "endure" her comments. I teach independent living skills for a local school district for students with Downs Syndrome ages 18-22. I thank God every for my job. These wonderful students teach me far more about life than I could ever teach them. The sheer happiness, kindness and love that emanates from my students amazes me every day.
While I don't know you personally, I think it safe to assume that your daughter is going to have a happy fulfilling life just as you will having her.
Kate
hugs!
part of Kayla's life purpose (because we all have one) is to help educate those that don't yet understand. ♥
Maybe the commenter was thinking of the fact that a lot of kids with Down syndrome are prone to certain medical problems like leukemia, heart defects, etc. But other than the possible medical complications, I can see no reason on Earth why Down syndrome could be considered a punishment for a child at all! People should not assume that just because someone may end up with a DIFFERENT life than themselves, they are doomed to be miserable! I believe Kayla is blessed with absolutely everything she needs to have a wonderful and happy life.
My goodness, I can't believe anyone could think that. It is shocking that they view the world based on their own very limited views which are almost certainly only born from ignorance and wickedness. I'm so sorry Michelle. So sorry.
When I first read this post...it made me so mad I just wasn't even sure how to respond without sounding like a crazy person. I've known and loved so many people with Down syndrome. For someone to say that...I can't even repeat it. I will simply say that I disagree in every way possible. People with DS are just that, people. I have pretty bad scoliosis. Should my mother not have had me because I have some pain and challenges? What about kids who need glasses or a wheelchair? It gets a little creepy, like playing God.
I'm just glad you can speak out about this, you are a wonderful advocate for your daughter!
Jonathan isn't suffering either...he is a bright happy boy, living a life just like other kids and his siblings. Sad that not everyone can see those with Ds, plan an simple as human like you and I!
After 11 years it still bothers me too...that's what makes us the moms we are ;)
Kayla is is a precious beautiful princess!!!
I have a teenage daughter who suffered often through elementary school. She was bullied in 3rd grade and cried a lot. She had difficulty getting along with her peers and was shunned by some of the girls on our street because she was different. She liked to play video games instead of Barbies. She liked to hang out with boys as friends, not because she had a crush on them. She didn't (and still doesn't) put a lot of stock in doing her hair etc. She has an annoying habit of being right all the time and not listening to other's opinions even when she is wrong. But I love her and help her through her troubles. She's doing quite well in Jr. High.
There's nothing wrong with my daughter other than she's a person and has some "special" needs like ANY child does.
Oh, I also have a daughter with Down syndrome. She's in 4 yo preschool at another elementary school in the district. Everyone loves her. Even the older kids know her by name. She's a little superstar there. She stole the show at the dance recital last year and EVERYONE was talking about her. I think the only one "suffering" because of her Down syndrome is me and that's only because I love her so much I want the best for her and that's only once in a while. Most of the time, I just enjoy her. She's a happy, healthy beautiful little girl.
Post a Comment