Worthy of Life

So often individuals with DS are seen as not worthy of life and often people talk about how much they "suffer from Down Syndrome."  In an article about a new test coming out that can detect DS prenatally, one ignorant poster made such a disgusting comment that it just makes me wonder why one would think one life is less worthy than another just because of an extra chromosome.  Here is said ignorant comment....If you can prevent suffering, wouldn't you? Perhaps something like Type II diabetes -- a disease that is usually adult-onset and easy to manage with proper attention -- wouldn't be worthy of an abortion, but something as serious and disabling as down syndrome? I know that the individuals who have it often lead relatively good lives, but they die young and often suffer quite a bit during their lives.

I would urge the parents of these children who advocate against testing or termination upon a positive test to examine how much of their opinion is based upon their own need to care and love for their child. Yes, your child is likely wonderful and kind -- most people with down syndrome are incredibly nice -- but are all the struggles they go through worth it? Wouldn't it be good to abolish something as clearly problematic as down syndrome, to effectively cure it?  

The only thing that needs to be cured in regards to Down Syndrome is ignorance.  I could go on about my feelings on this, but I think this mom of a beautiful girl with that extra something does a pretty good job at summing it up with her video she made of some beautiful soles with Down Syndrome.  When you click on her blog, scroll all the way down to the bottom first and pause the playlist and then scroll back up to the beginning and watch the video, but be warned, you may shed some tears as the song is very fitting to those beautiful children.

http://babynumber10.blogspot.com/2011/01/worthy-of-life.html

One Year Ago

Ok, so it was a year ago yesterday... Kylee had open heart surgery to repair multiple defects and did absolutely amazing!

By looking at Kylee you would never know she had had heart surgery.  She is a ball of energy.  Sometimes, it seems as if she has had a whole pot of coffee with as much energy as she has.

She is such a sweet, silly, beautiful, yet stubborn little girl!  We are so blessed to have her(and Kate) in our lives.

Yesterday, we had heart cupcakes and sang to her, which she thought was funny.  She sure did love her cupcake though as you can tell in these pictures.

Case Of The Mondays

This is what Kate said the other morning as she came out dressed up like she was off to work.  She said, "Well, i didn't sleep very good last night, but i'm off to work.  I have a case of the Mondays!"  She is so silly.

The girls had a great Christmas, although Kylee just preferred the wrapping paper over the presents.  

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Kate was very excited this year and counted down the days to Christmas.  

Both girls have been doing well, health wise.  Kate had some issues with her allergies bothering her for a few weeks and Kylee had a couple days with a fever due to an ear infection, but other than that they are doing well.

Kylee had a visit with the neurologist a month ago.  Her therapists recommended having her checked out due to the fact that when she crawls, she sticks her left leg out and now that we are working on walking she has issues there as well.  The faster she goes or the harder she tries, the worse it is.  Because of this and the fact that she had some oxygen issues when she was born, they recommended seeing a neurologist.  After meeting with the neurologist, she said that Kylee does have a very mild case of Cerebral Palsy, where it is only affecting her left leg.  She did say it won't get worse and if it starts to interfere more with walking, then we will look at getting a leg brace, which will help.  So far, though, she is doing great.  She loves to stand, and will take steps by herself, but only if she thinks you are supporting her.  I can just barely touch her and she will take a few steps, but the second i take my finger away, she plops down.  She also loves to have races with her walker against Kate and Daddy.

She really is doing great overall, though.  Still working on a few things as she can be very stubborn and refuse to feed herself or say words or signs when she knows perfectly well how to do these things.

Kylee got to meet her online "boyfriend!"  Bennett is sooo cute with his big brown eyes.  Another mom, Christy, that lives in the area who has a little cutie with Down Syndrome and I met Bennett, his mom Adrienne and his family as they were visiting out of town family.  I know his mom from facebook and blogging.  Bennett is so cute that Christy and I always joke around as to which of our daughters will get to marry Bennett.

Bennett

holding hands

Arden, Bennett, Kylee, and Bennett's sister

Here is Kylee's best buddy Ava.  Kylee and Ava are practically twins.  We try to get together a couple times a month.  Ava is one month younger than Kylee and also sports an extra chromosome and has the same two heart defects as Kylee, which like Kylee she had successfully repaired last year and did amazing.