Monday, October 1, 2012

Down syndrome awareness- day one !




Happy Down Syndrome Awareness Month !!

Three years ago I joined the 31 for 21 campaign, which means I'm blogging every day to raise awareness for Down syndrome. You can read more about this effort by clicking on the Grab This Button link above.

I'm honored to join a community of bloggers who are participating in this event - it's going to be a wonderful month!

I'm starting off today by reflecting back on the moment I first became aware of Down syndrome in a personal way.

The following is an excerpt from one of the very first blog posts on A Perfect Lily...at the time this blog was called Waiting For You. We had just gone to our first level II ultrasound to take a peek at our baby, and received news that he/she appeared to have an av canal defect as well as several markers for Down syndrome.


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Why have I felt all morning like I was going to hear something like this? Why when I was brushing my teeth and looking in the mirror, did I have the thought that tonight when I was brushing my teeth, things would be different? Was God preparing me? Or is it my anxious mind, trying to prepare for the worst, even when there are no indicators that anything is wrong? Why have I been praying for my baby's heart this whole pregnancy? Did God lead me to do that, or did I do that with all my babies, and I'm just more conscious of it now?

Wait a minute...surgery? Open heart surgery? On my little baby? Why is Daddy sitting there so calmly, and even Mackenzie just smiles at me reassuringly as this possibility of my baby being cut open is discussed? Is everyone staying calm for me? My legs are shaking visibly again now, and the sweet genetic counselor pats them and smiles sympathetically at me. I don't like this ugly feeling of panic that just washed over me, the same feeling I've had when one of my children has gotten "lost" for a split second in a crowded place. I start praying inwardly- God, give me strength, and help me to just be "normal" and not a silly, shaking, nervous freak. Kenzie is here, and if I start crying or acting worried, it will scare her.


I finally ask the doctor what is floating around my brain- is this a marker for Down syndrome? He blinks and nods his head and says yes, any time there is a heart problem, especially av canal, that is a strong marker. I ask- and the kidneys? He looks me in the eye, nods, and says yes, that is a marker too. I just stare at him, and he stares back and pats my leg and says "I know, it's not easy to hear." ...or something like that.

I don't like this quiet, dark room with the magnified picture of your heart on the screen, I want to get out of here where Daddy and I can talk and pray, and think, and talk about baby names, and show people your sweet, beautiful face, that picture that looks so much like your brother and sisters- how could you be anything other than perfect??
When we do get to the car, I start crying- all my emotions and fears come tumbling out...
We drove home and talked as we drove...Daddy reassuring me that we don't even know yet IF there is anything wrong...Kenzie very quiet in the back. I made several phone calls, decided we didn't want to tell your little brothers and sisters anything until we know for sure. Asked friends for prayer...stared over and over again at your angelic face. Calmed down- God is going to help me through this journey. Maybe it's a short one, and in 3 weeks we'll find out there was nothing to be concerned about in the first place. Maybe it's a little longer- maybe you'll need surgery and then our lives will go on as before, this just a bump in the road, albeit a big bump. And maybe this is a life-long journey, one that will bring new changes, and challenges, and things we never knew we'd go through...But either way, God is faithful and He knows the road. I know He is going to give me strength for whatever we go through. I feel it already.




Baby, whoever you are, know this. You are loved. You are cherished, and longed for, and prayed for, and treasured, and so so loved. I don't care what you have, how many chromosomes, how many defects, Mommy and Daddy will take care of you and do all that we can to show you how very loved you are.


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And here we are, three years later. I can honestly say that God is faithful and He does know the road. This journey that we began was indeed a life-long one, and I'm blessed beyond belief to be on it.

Lily has opened my eyes to so much - so very much - and I'm thankful that God in His wisdom gave me the perfect gift of HER...




Happy Monday !

3 comments:

Mrs. K said...

Oh my Lily Anne, you are ever so sweet. Every time Grammi sees a picture of you she thinks "Oh this is my very favorite picture of my Pixie Lily" then Mama posts another one and my heart melts. My heart melted when I first laid eyes on your tiny body coming into our world. My heart was wrenched when you were fighting those nurses trying to give you oxygen. I was screaming in my head "Lily Anne you take that oxygen or you are going to break many hearts." I see you looking at yourself in the mirror and smiling and am filled with such joy, such pride, such love. You are truly a BEAUTY TO BEHOLD. You are one of the best gifts God has given us.

Laura said...

Happy Down Syndrome Awareness Month!

Jane@flightplatformliving said...

to all my friends and especially you Patti who has changed my life forever...HAPPY DOWN SYNDROME AWAREMNESS MONTH! i am so blessed to know you all and your wondrous kiddies. And although my daughter has slightly different chromosomes to your own beautiful children who have down syndrome, i to know the blessing of designer genes and celebrate this month with you! Thank God and Heaven for our open eyes and wonderful kids! xxx