World Down Syndrome Day

Today is World Down Syndrome Day!

And today I celebrate the blessing of a life that I never could have dreamed of!

The life I have isn't what I imagined when this little boy was born.

It's not what I pictured, it wasn't what I asked for, and it sure wasn't what I had planned.

But if I had planned it,

It wouldn't be the miracle that it has been.

And I am NOT this amazingly creative.

Today's date: 3-21 was chosen specifically to mark this great day just a few years ago. It was chosen because Down syndrome is characterized by the presence of a 3rd chromosome on the 21st pair in the genetic make-up of my little baby boy, and so many others like him.

Now I am not any kind of expert or scientist. I have spent more than my fair share of time with doctors, but I don't pretend to be one. I am not even a licensed educator. And I am far from a biologist or geneticist. But I am a mother. A mother with a theory.

A theory of what just might be on that 3rd chromosome. At his birth, the doctors had seen many "characteristics" that clued them in to this possible diagnosis. I suppose maybe some of them are due to his 3rd chromosome. He had almond shaped eyes, he had these little white flecks in the blues of his eyes that are called Brushfield Spots, he had one crease in the palm of his hand that stretched all the way across, and he had a thickness of skin around his neck. He also had low muscle tone.

But there are other things that come on that "little extra" that no one explained at his birth. The stuff that we have learned along the way on this journey since that first overwhelming day.

Here's what I think comes on that strand of DNA.

Innocence. He always has, and always will, possess a state of innocence about him that is to be treasured. He remains childlike in his excitement over simple things and is still quite honest in his expressions. He will let you know if your shirt is un-tucked, or hug you whenever he thinks you might need one. He will have $20.00 to spend, but only buy a car for 50 cents - and be thrilled!

Love. He loves without reservation, without requirements, without judgement, and without expectation of return. Even that young girl who doesn't give him the time of day. He loves her anyway. He loves people in a way that catches their breath, whenever he smiles up at them.

Forgiveness. He forgives monster mommy, crabby and naughty sister, and frustrated daddy every time. It's like the slate is wiped clean when we mess up and act selfishly, only to be hugged and called "best friend" when we play Lego's, cook with him, or read stories.

Joy. Pure joy. The kind I have to talk myself into most of the time. He just is. Joy over a new toy car. Over watching How to Train your Dragon, for the 50th time. Or over going to Perkins for pancakes. He is 95 pounds of sheer joy that I catch every day as he runs into my arms when I pick him up from school. He has been doing that since he was 3. My other two barely say hello, but he still acts like it's been days since we last saw each other. I love it, but I wonder how I am going to catch a 17 year old one day, or how long I can do this before we both fall over.

Acceptance. He doesn't judge anyone. And he never complains, even when he has a perfectly understandable reason to.

Persistence. It's what kept him trying to walk - for three years. It's what kept him trying to be potty trained - for 12 years. It's what kept him learning to read, trying to type, figuring out how to do a zipper, put toothpaste on the toothbrush, and unbutton all by himself. He is still persisting to talk too. Even when I want to give up - he doesn't. Even if we are running late, and he wants to put on his own coat and zip it himself. It is more important in that moment - to be late. Now some people think this is synonymous with stubborn. I think the only time he has ever been called stubborn has been when an adult wants him to do something he doesn't want to. It's inconvenient for them. Every milestone he has ever hit, was because he is persistent.

Survival. There are many people faced with medical, emotional, and other major difficulties that come with having Down syndrome. And they are amazing survivors. Anthony has been through so much, but it never takes him out. He is a very tough little guy.

All these beautiful things come with that extra chromosome, among many others I am sure.

What I never expected though, what really snuck up on me, was just how much he would change me. I have been so challenged in my feelings about my own innocence and remaining child-like. My understanding of true unconditional love, my ability to forgive, my ability to be joyful in every day and every situation and circumstance. My conviction to stay persistent and reach my own goals, and my willingness to see myself as a survivor of things that I often resort to feeling like a victim to.

My son has taught me that without that extra chromosome - I am missing out on what's truly important in life. The stuff that really matters. Love, joy, acceptance, and forgiveness. It's through these things that I am a better person. It is through him that I have learned them.

I would have never guessed the impact of that little chromosome on me. I thank God for this little guy. In the beginning, so many people said "God won't give you more than you can handle". It used to drive me crazy. Because I was SURE I couldn't handle this. But now, I see. I NEEDED this. I needed him. Life is not what I had imagined, it's better. Now I get it. And I am glad I did.

One more thing - I am pretty sure that chromosome came with dimples, freckles and wings too.