Friday, March 21, 2014

Happy World Down Syndrome Day

Today is World Down Syndrome Day....





Just in case you didn't know... people with Down syndrome have 3 copies of the 21st chromosome.
Thus the reason we celebrate World Down Syndrome Day on 3/21.


A friend on Instagram shared this quote with me today, and I love it :

Down syndrome occurs randomly, like flipping a coin, or winning the lottery.




And it's so true- we hit the jackpot with Lily :)








Before I had Lily I had a lot of misconceptions about Down syndrome.

I knew we would welcome a child with special needs, because we fully trust that God is in control of our lives. We believe He designs our children, that He knows them before they even came into existence.

Before I formed you in the womb, I knew you. Jeremiah 1:5






But admittedly, before I had Lily, I thought that Down syndrome was something we would have to learn to live with. I thought that there would be things about my child that I couldn't embrace, that would somehow make my love for her a little different than loving my "typical" children. I thought as I watched her grow there would always be a little ache for the child I thought she'd be.







Can I tell you I was wrong ?

Completely and totally and naively wrong.

I had no idea how easy it is to love a child with Down syndrome. It isn't a heroic act or a selfless act or a special act... loving Lily comes as easily as breathing.

Here's what I have learned about Down syndrome :

Kids with Down syndrome are just that - kids.

They have likes and dislikes. They have foods they like and foods they hate, they have favorite toys and favorite friends, they have things they like to do, and some things they flat out refuse to do. They are kids.

My daughter is happy. Completely and carelessly and exquisitely happy.

And she is also : feisty, grumpy, moody, shy, rambunctious, angry, pouty, playful, mischievous, irritable, wild, thoughtful, timid, aggressive, willing-to-share, demanding, sweet, and ornery.

She's a child.

Lily makes us laugh, she plays with her siblings, she fights with her siblings, she is compliant, she tries to get her way, she puts away her toys, she refuses to put away her toys, she loves spaghetti, she hates spaghetti, she goes down for her naps easily, she refuses to go down for her naps, she loves to share, she hates to share...    she is a child.

More than anything else, I think I've learned that Down syndrome - while it does pose extra challenges at times - doesn't take away from who my child is.

She is, first and foremost, a child.




And if anything, Down syndrome gives us reason to celebrate all the little things we previously took for granted. We don't casually observe milestones anymore -we relish them. We know how hard our daughter works to nail them, and when victory comes, it is all the sweeter because of it.






To all our friends world wide, who share our love for Lily and for others who happen to be blessed with a little something extra - happy, HAPPY, World Down Syndrome Day.







xoxo





*********

p.s. Today is my oldest child's birthday, and my brother's as well.


HAPPY BIRTHDAY JASON CHRISTOPHER !!!! We love you tons and tons immeasurably :) You're the best daddy, son, and friend. We couldn't be more proud of you !




And HAPPY BIRTHDAY CHRISTOPHER CHARLES !!!  You have the best smile on the planet and we love you to pieces :) And you need to come see me. The End.

8 comments:

Pink Slippers said...

I LOVE-LOVE Lily's tee. Perfect! No more words need to be said!

lindley said...

So love this! Happy World Down Syndrome Day! Thankful to be on this journey, in separate places, with YOU!

Kim Ludwig-Sharpe said...

Happy Down syndrome day! Great pix! Beautiful Lily! Smiles

cara said...

Happy, Happy Down Syndrome Day!!! You said everything SO perfectly. Jon and I had a sneak peek into a life with a child with Down Syndrome when we worked with a precious, little guy with Down Syndrome at our church nursery way back before we had kids. He was adorable. We just loved him! And little did we know that years later, we would also welcome a brown haired boy like him into our family. How blessed we are!!! We are SO grateful!!!!

I LOVE the video of Lily! I will have to send you the one I posted of Benji today. He wasn't so cooperative, ha. Mary introduced him, and he just wanted to be silly! But he's our sweet Benji!

I am also so thankful for this journey because I have met amazing families like yours in this community. What a blessing for this!!! xoxo

cathy said...

Happy World Down Syndrome Day!
Happy birthday & happy birthday!

xoxo
cathy

Race Bannon said...

"Do not hang on me. Don't hang on me…"

MamaV said...

Awww, what a happy day!

Raelyn said...

Patti....
Oh dear, I have fallen behind in reading/commenting on this Blog!! Not surprising.... ;)
Lily's T-shirt!! It says "Keep calm, it's only an extra chromosome"!! To quote Jesse from "Full House". "Loving it. Loving it!"!! ;-D
"Down syndrome occurs randomly, like flipping a coin, or winning the lottery.". I love that!! Yes, you did "hit the jackpot" with Lily!! As did our family!! ;)
Very good. Very, very, very good. I loved--and agreed with!!--every single word!! Every. Single. Word. ;-D
Happy World Down Syndrome Day.... Belated!! ;)
--Raelyn