Friday, September 30, 2011

The Good, the bad, the ugly.

(Leighty and her brother) 
  I know I have written about this new test before, but this article says it’s looming near.  It makes me sad.  Why you ask?  When I had Leighty we didn’t have a diagnoses of Downs Syndrome in utero.  If I did I wonder if I would have missed out on the excitement of planning for Leighton. Would I have chosen that name? Would I have made her all her snuggly blankets? Would I have researched Down syndrome and prepared for her diagnoses and not Leighton herself?  I don’t know, so I guess it happened the way it needed to.   
(Leighty lounging)
Why do I care if there are less Ds kids around?  When a minority starts to become a little more of a majority in our country the more it is accepted by society.  Does that make sense? I explain it like homosexuality.  The more it’s out there, the more it’s accepted or tolerated by society.  We even have same sex marriage in some states (not saying I’m for or against it here, just an example).  We'll be missing out on a lot of education between children, and parents if 90 percent are terminated. If some of the people that helped me through the shock of finding out chose to terminate where would I be?  Would I know that everything would be fine?  I can read about other people’s lives with their children and see life's pretty great for them.  They are all so adorable with their almond eyes.  Now I have Leighton I have a special space in my heart for all her peers that share the same markers.
In the article it has some really good info.  It said among the more then 3,000 Down syndrome adults they did a study on that 99% were happy with their lives, 97 % liked who they are, and 96% liked how they looked. I think that is so amazing.  I can ask you these same questions and I can pretty much guarantee that 96% of the ladies who read this are not happy with how they look.  My husband thinks I’m weird but I’ve always told him Leighty seems to be pretty comfortable in her skin.  He says it’s just me being comfortable with her, but I disagree it’s just something I feel in her mannerisms (She has the I’m cool factor).  Some people wonder how will it affect their other kids.  They did a study on the Down syndrome patient’s siblings too.  Of the siblings 12 years and older 97% of them said they felt feelings of pride about them. I see that with my kids.  They love her; they fight over whom she loves the most.  She loves them both; they always get the second most smiles (I get the most).  They brag about her.  The other day I told my daughter to quit growing so big, and she said she had to so she can grow up and she can be a Mom and have a Down syndrome baby.  I’d say her family seems to adore her.  My son started crying in bed because his heart felt empty when he was away from his sister.  It was so cute that he can feel it in his heart when she isn’t in his presence.  We’re so happy to get the chance to know this little girly.   It will make me sad for those who terminate. They will miss out on having a perfect child like mine.  She's so adorable and deserving of giving and receiving love.  Whats next for America? No more people with freckles?
(proud sister)

Monday, September 19, 2011

Angels or Defects? Maybe just "Kids"

 I read this on another blog and it made me think....

"It seemed and seems to me that people with Down syndrome are seen either as “good-natured,” in a childlike way, or are held up as examples of bad nature. Too often they are seen either as angels or defects; too often, they are seen as perpetual children. I think that we would be better served seeing them as present and future citizens; that our medical interventions would be best if we keep that vision of adulthood and citizenship in mind; and that narrative – a narrative which is clear-eyed about medical realities, yet without surrendering hope – provides one means to make that vision real to the doctors of today and tomorrow."
 (imperfectly perfect photo)
I'm one of those who think of my baby girl as an angel.  I've told people this many times.  There's just something wonderful about this little girl.  In my religion we call it her spirit.  It's her Soul or Aura. She just has this peacefulness and happiness she makes people feel.  Do all DS kids come this way? I don't know.  I believe kids mostly come the way they come.  The whole Nurture VS. Nature thing.  I think it's some of both.  In my two older children they are basically the same as they were as babies.  
(another imperfectly perfect photo)
 My Son is the most needy, was as a baby, and still is.  My Daughter can self satisfy.  She was that way as a baby, and is that way now.  Yes I believe our life experiences shape us, but we deal with things the way we deal with things. So do I think it's good to think of DS kids as kids?  Yes!  They may come as Angels, or they may come a little harder. That's so normal of everyone.  Most mothers love their kids anyway they come.  Yah my Son is harder to get along with then my Daughter, but do I love him any less?  No way.  Both my kids have had some royal tantrums.  I'm sure the people at Target thought my Son had "behavioral problems" after one of his more memorable tantrums. He doesn't, he just didn't eat enough that day and was unreasonable.  Embarrassing? Totally!  Did he get in big trouble? Most definitely.  I know Leighty isn't grown yet, but I'm sure she'll have some of those tantrums too.  She's normal, she's a child, and I fully expect her to have them.  Maybe I even expect it more because I know they have a harder time communicating.  Think of not be able to always get your needs heard.  It would be so frustrating, I might want to throw some tantrums too.  I'm looking forward to being there while this little girl grows up.  There's nothing I want more, with tantrums and all. Leighty's my Angel, just like I think the other two are Angels as well. Their all a little of both, Angels and little devils, their people. Their imperfect, but wonderful and amazing. Their perfectly them!

Wednesday, September 14, 2011

The Happiest Place On Earth.

Our trip is almost through. It's been so nice to not even think about all the stresses of life for the last few days. We have just been enjoying this time as a family with no distractions.  Leighty love bug has been so good.  
Her first sucker.
First Balloon.

She's done a little of this.
One of my favorite faces she makes cause you can see her dimple.
This little girl smiles all the time, but when I pull the camera out she stops and studies the camera instead.  Even though she's not looking I got it!
This little girl has opinions, and she picks out her toys.  I can tell because when I hold up something she likes she pulls it to her and kisses it or talks to it. She loves red heads, and picked out a baby Ariel.
Somehow we missed sunscreen under her eyes, and she got fried. She doesn't seem to mind though and is still having a blast.

Monday, September 12, 2011


I can't think of a better way to spend the 10th anniversary of 9-11 then what we did today.  
We we're at a MLB game.  
 They handed out flags to everyone as we came in.
Leighty loved her's.
 They honored those who past away in the attacks.  I remember my Husband calling me that day to tell me to turn the TV on.  A plane hit one of the towers.  We didn't know what was going on, at first I was thinking I was just there. My Husband and I spent our honeymoon there 9 months before the attacks. Our hotel was right next to the towers.  Then I was watching live as the second plane hit.  It was so confusing. Then watching as the first tower collapsed and then the second.  I felt sick for the people who died.  Most of them didn't choose to be Heros, they didn't go out that day knowing their lives where at risk they weren't making a stand for their country, or freedom, they were just working.  

I remember thinking how tragic it was.  I was so angry.  How could they do that to our country. War is not fought on our soil, and it was a dose of reality.  We we're all glued to the TV that day, the rest of the world seemed to stop. I still think of the people searching with missing person pictures for their loved ones. The sadness on their faces. It will never leave my mind. 
 It was the perfect way to feel pride in being an American.  Watching baseball (the American Game),  and it being the Yankees was even better too.  Can't be anymore American then that. I love our Freedom, God bless the USA.

Monday, September 5, 2011


Leighty bug had her cardiology appointment this week.  It didn't go as well as we expected.  Her PDA is smaller, but her cardiologist wanted more progress and started talking about surgery.  As of now she would have to have open heart surgery because she's so tiny.  We are praying it will close. At the very least we're hoping she can wait until she is big enough for the other procedure, where they can go through an artery in her leg.   There is risk involved in that one also, but the recovery would be so much better.  It's hard for us to be considering open heart surgery for her when she is so healthy,  and growing so well.  He expected her to have to be on heart medication by now, and having liver problems, but she isn't having any major problems from the small hole. She was moving around the whole echo, she had her legs in the air spread-eagled (her favorite), and was chatting to the tech.  We have heard that this can effect the results of her echo so were crossing our fingers that her sedated one will be so much better. Here's some pictures I took at her appointment
This is an x-ray of her lungs.
 Getting her Echo
but I would always rather be taking these kind of pictures.