Thursday, September 30, 2010

What is life like for a child with Down syndrome?

Often, when people ask me "Do you have children?" or "How many kids do you have?" that usually ends up with me talking about my kids...which often leads to me mentioning that one of our twins has Down syndrome.   That bit of information usually results in an "Awhh"  from them.  Which really is their way of saying "too bad".  Can I tell you how much I HATE that!!!!! 
When I think of Braden and his life I never think "Awhh". 

People are always concerned with what kind of quality life could he have?  And I have to tell you --- he has the same quality of life that each of my other kids have!  He lives in the same home, goes to the same places, eats the same food, has the same pets.  I know what they mean... is it so hard to live with this condition that they would never want to live a life like that.  Like it would be a life not worth living. 

But I think your quality of life doesn't boil down to what you know or what career you have.  What you own or the number of zeros in your bank account.

I think it is about how you feel each day as you lay your head down to sleep at night.  I think it is about what made you smile that day.  Who loved you and who did you love.  It's about ice cream and rainbows.  Swimming and swing sets.  Having some one to kiss your boo boos. I think it's about sledding and hot chocolate.  Campfires and s'mores.  I think it is about snuggling under blankets and watching your favorite movie.  I think it's about throwing snowballs and eating snow. 

I think it is about

being nutured

and belonging to a family

about being adored

and celebrated

It's about feeling the salty sea breeze

and splashing in water til your soaking wet

It's about enjoying your favorite foods

and cheering for your favorite team

It's about special outings to the zoo

and building sand castles

It's about dressing up in cheesy, homemade Halloween costumes

and reading a good book

It's about driving your truck in the sandbox

and saying your prayers

It's about slides

and brothers

and rock climbing

and holding a newborn

It's about having trick candles on your birthday cake

and having best friends

So, I say there is no "Awh" here.  Nothing to be pitied or felt sorry for.
What is life like for a child with Down syndrome?
Take a look at his face.

Take a look and see.

I see happiness.
and love.
and fun.
I see a life definately worth living!

Monday, September 13, 2010

My Heart


New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

copied from:

Tuesday, September 7, 2010

Big Kids head back to school!

I'm not sure how I feel about my house quieting down?!  It's great to be able to have Greyson all to myself and he is able to have my undivided attention.  But I'm gonna miss the mess.  and the wrestling.  and the big afternoon pool parties.  and jammy days.  and half done projects sitting all over the table.  and bikes thrown in the yard.  Oh we still have the weekends, I know.  But I love the summer with all my kids home everyday!  However, it is that time of year and so off they went - with their new tennys, lunchbags and backpacks - back to school!

Allie starting her sophmore year - yikes - how is that possible?!

Cameron, Braden and Grant obliging their mama with some picture taking!

Braden starting 3rd grade!

Grant also starting 3rd grade (and waiting on the bus)!

Cameron starting 5th grade!

What a crew!

Here comes the bus!

Off they go!