Tuesday, March 22, 2011

Life is good...













I just sat down to take a few minutes to look at the pictures on my phone & my camera & I couldn't help but notice how great our life is. How special it is. And how much our wants now out weigh our needs. That is a good feeling. This morning I had mixed feelings about "Down syndrome day". Today is World Down syndrome day. A day to recognize Down syndrome. It's today because of the date 3-21 (people with Down syndrome have a 3rd chromosome on the 21st set of chromosomes). Get it...3-21! Anyway, back to my mixed feelings about today. See, we (for the most part) celebrate Down syndrome (besides on a daily basis) with our family and friends at the Buddy Walk. I think it's fun to connect the dots between today's date & Down syndrome, but to what extent. I still struggle with making sure out life isn't consumed with Down syndrome. I still struggle in making sure our life stays as "normal" as possible. Down syndrome is part of our life, not our whole life. But sometimes it feels like it out weighs the normal parts. I can't ignore it and pretend it doesn't exists...nor would I ever want to. But it can't take over. So on days like today, I struggle on how much attention to give it. At one point in my head, I had a big family picnic on the beach planned, with a big family photo, & a lots of talk of Down syndrome & all the joy it has brought to us. How it ended up...we walked to the beach, balloons clipped to the wagon, got to the beach, the girls ran off one way, Jake ran off the other way...the balloons...one swift breeze took them up, up & away. Zach & I gazed in amazement of how high up and far they went, gave each other a smile and that was it! That was as much acknowledgement that Down syndrome got today! As far as I'm concerned, it was the perfect amount. Zach & I stopped for 10 seconds to watch those balloons go...and on with our day we went! It made me realize that Down syndrome can only take over our lives as much as we let it. We've got this! And it feels good!

4 comments:

Jen said...

loved it! i was saying the same thing in my "out of the bubble" post- and we have the rock climbing wall with a tunnel at the top- he likes to crawl thru it and freak me out by leaning over the edge!!! oh these boys

Andrea said...

I too get mixed feelings. I think what happened to your balloons was perfect! We acknowledge, celebrate and carry on with our beautiful life. Thinking of you!:)

dbentojr said...
This comment has been removed by the author.
Anonymous said...

Julie, what an emotional journey you and your family have been through. Just reading it made me cry, made me laugh and made me realize that I am not alone in feeling some of the things I have been afraid to voice. Thank you for sharing your story, your "real life". Kay