Living with a Gift

I love so many parts of this....



I need Quinny more than she needs me.

-Karyn

Quinny versus Belvedere

This is our dog Belvedere - he is a member of our family. Quinny started a new thing the past few weeks and she likes to go after Belvedere - touching him and tackling him. He has been good about jumping away, but the poor guy is being attacked by that little girl. Maybe he has to stay on the chair like in this photo because she can't get him there.

-Karyn

Shake Up Stereotypes

This is the LOVE I am Talking About

I Just Want LOVE, Not Politics

I have been quiet lately. A lot is going on, but I just haven't had the energy to blog until now. I have to say this though...

All I want is LOVE and not stupid politics.

I hate politics. Not as much as I hate Infantile Spasms, but still I hate politics a lot. It just gets in the way and divides when people should come together.

And now more than ever politics are interfering with my life.

I get questions about how do I feel about certain people in politics talking about the r-word. Somehow I get connected to another mother who has another beautiful child with Down syndrome who lives in a far off state. I do feel a bond with anyone who is the parent of a child with special needs (only those who have been to "Holland" knows what it is like), but that doesn't mean we are all the same. That doesn't mean I want another person's opinions and actions to be taken as my own.

I don't want Down syndrome to be associated with all this crap. I want to see beautiful images of people with Down syndrome. I want to see uplifting messages and not fighting, bickering, and carrying on.

I do hate the r-word and other insults, but I try to learn from my child and not attack people but educate them. Quinn has educated me more than anyone else in my whole life and she has done it with love, acceptance, and pushing me out of my comfort zone and not with arguments, mean comments, and hate.

I also don't watch shows like the Family Guy (it never appealed to me), and I personally do not have interest in the much talked about episode. Watching a comedic song titled "Down Syndrome Girl" doesn't really appeal to me when I have a beautiful girl who happens to have Down syndrome. That doesn't mean that I am against the episode or anything because I haven't seen it and quite personally I don't think I am in a good place right now to see something like that. I do applaud the beautiful young woman who happens to have Down syndrome who was employed by the show. I want to learn more about real people like her and see her beautiful face.

The thing I am sick and tired of is how even in our own community we get wrapped up in politics. Sides. All that.

I just hate it.

I went back to this clip today. Listen to the very first part. I think everyone needs to learn to be a little more like our kids, even me.



-Karyn

Pervasiveness

Want to know how pervasive the use of the r-word is? Check out this sampling...



Please support spread the word to end the word!



-Karyn

It Is About More Than American Idol

I cried. I actually cried. Tears welled up in my eyes as I learned the fate of Maddy Curtis. I felt a pain deep down in the center of my heart. I suppose some may think that I went overboard in my reaction to this young, talented girl I don't even know, but tonight was about much more than just a television program. It was about much more than American Idol. It was about acceptance for my daughter. It was about hope for her future being free from discrimination and hate.

Let me tell you about another experience this week, it might help you understand where I am coming from. I went to Target with Aidan this week. We were going along with our cart down the aisle. I could tell up ahead there was a woman with DS pushing her cart. I could just tell from behind - you tend to look for these signs when you have a child with special needs. This was the second time this week alone that I saw someone with DS. Normally I sneak glances at the individual with DS, glancing and wondering will be Quinn's future if this person is an adult, but this time was different. Instead of looking at the woman, I looked around me and took in other people's reactions. I watched the crowd around me. I saw a child watching this woman. He was walking backwards, unable to turn away from her. He had a disgusted look on his face. I saw his mother look and ignore his reaction to this woman. I saw ignorance. I saw discrimination. I saw hate. I decided right then and there that I have been approaching these types of situations entirely wrong. I will no longer steal glances at the individual with DS, I will instead watch those who think that no one is watching them. I will watch them. And I will let them see how it feels. I began staring at the child with a disgusted look on my own face until this child looked at me, noticed, and turned away. Sure, it is a child. I am an adult. Maybe it isn't nice of me, but I am tired of hate, prejudice, and discrimination. I see that this starts early. And it grows. It festers. It turns into use of words that hurt. It causes pain.

I then turned to watching Aidan. Thankfully, he saw this woman, glanced at her, and then kept on talking and going about his business. I was so proud of my baby boy in that moment. I know that Quinn has touched our lives so much. I know that my boys will be better people for having Quinn. I get Maddy Curtis' message. I feel it in my heart.

So why do I care about Maddy Curtis? Because she represented hope for me....hope that others will see the beauty and love in the faces of individuals with DS and the faces of those who love them. Her brothers would have been cheering her on in the audience. DS would have been discussed. Maybe it would have been possible for others to see some positive images of DS instead of the multitude of negative ones. She represented my hope that one less person would stare and look like that at my daughter. I am so sorry Maddy that this didn't work out for you. You just don't know how sorry I am. Thanks for sharing your story and the beauty of having someone with DS in your life. I thank you. Quinn thanks you. We all thank you. It was about so much more than a television show for us.

-Karyn

The Power of Something

Imagine being stuck in nothing.

Nothing happening.

A whole lot of NOTHING.

Why is nothing happening?

That isn't all.

You are constantly reminded that you are different from even those who are different.

You hear all about the happenings of others - the things they are learning and doing - and then all you have is nothing much happening.

Reminders all the time.

The others - those with DS and those who are typical. Story after story.

You begin to feel like an outcast.

You begin to wonder why you? Why your child? Why?

But I am lucky, I realize. Because now I have something. It is a miracle and a blessing.

The power of something.

Tonight it was unbelievable. Quinn recognized me, smiled a wide smile, and quickly crawled to me.

That is something. Your child recognizing you, moving, and loving you!

This might seem small to some, but it is huge when you were stuck in the muck of nothing.

There is a power to having something happen - especially when you felt that you were destined for a whole lot of nothing.

Thank you something.

I hate seizures. But once again I am struck with what they taught me.

So ironic.

-Karyn

Jamie Fox & His Sister

I so love him!



-Karyn

Dance Like Nobody's Watching

It is February! Wow, where does the time go?

I finally had a little time to explore for more documentaries related to DS. I found this little gem. Please watch. I am in totally agreement with Paul's mother, I am completely different because of having Quinny.



-Karyn

Out to Lunch

Sorry I haven't been blogging lately. The last two weeks have been very very hectic. Right now I am the only surviving member of my family that hasn't become ill - a little flu bug is going around our house. It doesn't seem to be lasting long, so if I get it, it shouldn't be that much of a biggie.

We finally went to take Quinn's two year old photos on Friday (delayed a few months because of IS and ACTH). I cannot wait until we get them to hand out to people and hang on the wall! I have included a sample here. There are some even better ones too, but this just gives you a taste. My girl is so beautiful I cannot believe it. I am truly blessed to have her in my life.

-Karyn

A Special Olympian

This weekend we went on a little get-away with the kids to Chicago! It was a great time. A cool experience happened when we stopped at Lambs Farm on the way home. Lambs Farm is a place outside of Chicago where some adults with developmental disabilities work. We were standing in line waiting to purchase some things from the bakery, when a woman working there saw Quinn in her stroller. She said to us, "oh we have a future special Olympian here" and smiled a wide smile. She told us how great the SO is. It was a pretty cool interaction and one I will always remember.

-Karyn

Normal

Ok I know I have gone on and on about my dislike for the term normal, but for once I like this one...Quinn's EEG is normal. The nurse read us a line from the report that her response to ACTH has been remarkable. I am so thankful that it worked.

-Karyn

Our Favorite

Here is who we are hoping gets through in American Idol!



Also, but the way of update - Still no phone call about the EEG.

-Karyn

The Waiting Game

Quinn had her follow up EEG yesterday, but they were running so far behind that Neal didn't get to meet with the doctor to go over the results (he had to go pick up the boys at school). Now we wait for a call. Of course, they didn't call yesterday - so we wait and wait and get more and more nervous by the minute. How can it be bad news when she crawls so darn fast now, right?! I can't believe how fast she goes!

-Karyn