Friday, October 14, 2011

in love.

I just can't get enough of this little girl.  I will be busy doing something and look over and her cute little eyes will just be watching me and when she see me looking at her back she gets so happy. She smiles and tells me something in baby babble, and I just sigh and I fall more and more in love with her.  She just a ball of cuteness. 


I think she knows that she has her whole family wrapped around her tiny chubby pinkie.  We're going to be in trouble when this little girl gets bigger.
-JS

Thursday, October 13, 2011

future cheerleader

Having Ds makes you really flexible.
Check out Leighton's trick..

(looking at me like-are you ready Mom?)

(check this out)
She loves playing with her feet, and it sure does help that she can contort her body anyway she likes to get them. 
-JS

Wednesday, October 12, 2011

a good read

It's been hard thinking of something to write everyday. So I'm going to tell everyone to go read the Got Down syndrome blog.  She always has good stories of Ds kids doing things people might not expect them to do.  Like a little girl who plays the piano, or a nationally titled gymnast. Also their was a story about a little Ds couple who were married and mostly living on their own. It's fun to read all these stories and wonder what great things Leighty might do.
-JS 

Tuesday, October 11, 2011

Fuss Bucket.

Leighty's been a little fussy.  She just wants her Mamma today. Sister was ornery yesterday and now has a stuffy nose.  Hopefully Leighty won't get it, but most likely she will.
Love this baby!
-JS

Monday, October 10, 2011

Life

  Something that is brought to your attention more frequently when you have a child with special needs is the fragility of life.  You know that with your other kids, but for some reason it is easily pushed out of your mind and you live your life.  When you have this child and they don't come out pink and healthy and they are taken away after moments, you realize it.  Even if your child is for the most part healthy your stuck in the NICU, and you see little babies monitors beeping with feeding tubes and a lot more machines around them then your child has.  Your heart aches for their mothers because you can put yourself in her shoes and feel that pain, that tearing of your soul. You will hop on facebook and check what the other special needs Moms are talking about today.  You will be happily going about your day and click someones little baby is sick, or has another medical problem.  Sometimes theirs a picture of the cutest child, and an obituary under it letting you know they have passed on. You will cry for those Moms, and you have never met them or their baby.  You know how special that child was to their family, and wonder how they will go on now their child has passed. Their will always be someone missing for her.  Will that Mom get in the car and go to make sure everyone is in, and think she's missing someone? Then she'll realize wait, their no longer here. Will she feel that loss all over again?   You will get on the internet and up pops a story of a Mom who was going to sell her 2 week old so she can go on a trip.  It makes you so mad because you know a Mom who has been absolutely devoted to their child. They've had endless hours of worry and many sleepless nights over their perfect, but sick, special needs baby.  Then that lady had the nerve to just sell her's like its was a used car.  When the Mom you know would sell the clothes off her back, or never vacation again, for anything to help her child be well again.  You know this when you walk in for a heart check sure everything is fine, and they slap you with open heart surgery.  Hey it's no big deal (why are you crying) lady because it happens everyday, but do they know it's your child? They want to cut open Her chest, pull out HER heart, and stop it, fix it and then start it again.  Don't you know she's my heart too? I will be the one sitting with her all night waiting months for her to be normal again, and you will go home at five and forget all about it. I see these things everyday, and I choose to hold Leighty more. I skip doing the house work that needs to be done.  I wish I could say I'm more patient, and kinder.  That still slips away at times, but I reel my anger in faster.  I'm not always perfect but I try to be more careful of my words, and be less offensive to others who are different then me.  I'm not essentially different. By that I mean I don't go talk to every Ds person I meet, because I'm still shy.  My outlook is different. When I see someone missing 2 legs, but their up walking on artificial legs. I don't feel pity for them. I feel admiration.  I think how fulfilling their life still is, how strong they are, and how lucky their families feel.  It may come as a shock that this child isn't what you expected, but this is a child you will love.
(Leighty making a raspberry)
 -JS

Saturday, October 8, 2011

A little mimic

Leighton loves to watch her brother and sister. She loves to watch her sister at ballet.  It's so cute her little head just follows all the dancers.  So I was looking through my pictures and came across this..
I swear she is copying her sister.  I can't tell you how many pictures I have of her sister doing that same face.  She thinks it's a super model pose.  
-JS