What do you want people to know about raising a child with a disability?

Lately the following "status" on facebook has made its rounds in honor of special education week...

"People need to understand that children (and adults) with special needs don't have an illness, so there is no cure and it's not contagious. They only want what we all want: to be accepted."

This is so very true.... and it was actually that facebook status I first thought of when I received an email today asking me if I wanted to contribute to an article with the title;

What do you want people to know about raising a child with a disability?

The author is looking to write an article for a parenting magazine:

I am writing an article about parenting a child with a disability. It can be funny, informative, or a form of venting. All I need is a single phrase, a few sentences at most. If I see common themes being repeated, I'll know it's important to include it! It will probably be in a "top ten" format, and I am hoping to keep it simple!

So, in addition to highlighting that facebook status I thought I would also answer that question with my own thoughts...
"Raising a child with a disabilty is just like raising a child without...you have your highs, your lows, your battles and your victories. The only difference perhaps is the extra sense of perspective and the extra dose of clarity gained from that special soul of what is truly important in this life."Cheri
But, what about you? What would you like people to know about raising a child with a disability?
I have decided to send the author this blog entry rather than just my thoughts so he can hear from all of us collectively.... if you feel compelled please share your thoughts by May 1st and leave your name.

Overnighter...On a School Night...at the Aquarium???

Yep! Last night Luke and I had the opportunity to stay the night...at the aquarium. Like as in literally slept in sleeping bags on the floor amongst the fish tanks, jelly fish, and the really cool leafy sea dragons.
What could be better in an 8 year olds life....all while on a school night? I must say I do not think I ever slept anywhere other than my own home on a school night growing up... ;)

A Little Sunshine for World Down Syndrome Day

Today, 3/21, signifies World Down Syndrome Day. Kind of clever in that it is the 21st day of the 3rd month of the year in honor of 3 copies of the 21st chromosome, which is known as Down syndrome or Trisomy 21. Before Reid was born the celebration of this day never reached my radar, I had no idea this existed. Reid's birth has taught me a lot about a lot of things that never reached my radar before he was born. I like knowing about these things, I like the way his extra chromosome has forever changed me for the better, and I like....no actually love...that this little extra chromosome of Reid's has introduced me to so many beautiful families...all over the world.

Recently I was given a Sunshine Award by a fabulous grandmother in Ireland, Nan P., though she is originally from France, who blogs about her beautiful grandson Cathal who has Down syndrome. I love reading about life from the perspective of a grandmother... and I must say this is one young and hip grandma who recently went and rocked out to a U2 concert!! I love it ;).

I was honored to receive the award from her and thought I would save it to pass on until today, World Down Syndrome Day. I wanted to pass it on to fellow bloggers I love following...who live in a different part of the world than me and that have also been touched by Down syndrome.

So here goes...a little sunshine sent from me across the oceans to:

Germany- to Conny Wenk and her beautiful daughter Juliana (who last year was Luke's international pen pal for a first grade project). I first found Conny through the Gifts blogroll and was so captured by her amazing photography...she is beyond talented and has such a fun sense of humor! In one of our mail exchanges Conny gifted us with one of her books, Three Little Butterflies...I squealed with delight when we received it and we have it displayed lovingly in the boys room.

South Africa- to Loren, who's blog I began following shortly after Malakai was born. She is a fabulous writer who writes from the heart and I enjoy reading about their journey. They recently welcomed baby brother Harlan into the mix...who is as equally cute as big brother!

New Zealand- to Mel, I know you already received this so as Nan P. says...just add it to your bouquet and count yourself doubly loved! ;). I love reading about the adventures of your adorable Luke, plus I am kinda partial to his name so it was a no brainer to like you! ;)

Canada- to Heidi whose sweetness and adorable boys transcend through the computer screen. She and her husband recently spoke at their church about the news of Joel's diagnosis and raising a little one with special needs, and even though I knew she was from Canada it was so fun to hear her accent on the video....something that does not automatically transcend through the computer ;).

Phillipines- A new blog to me... May I am so glad you found me and I look forward to following your family's story and watching little Lucas grow, his smile is infectious!

....Is it corny to end by singing, It's a Small World?!? ....but in actuality it is, and even smaller when you talk about the family of Down syndrome and the instant bond you feel with another mother, grandmother, or family member who also loves someone with Down syndrome.

So to my blogging friends oceans away....thank you for allowing me to share in the beauty of your families. I hope this little sunshine award brightens your day! xoxo

Wordless Wednesday: An Oldie But Goodie of Luke

Watch CNN International at 1:00 today PST....or 4:00 EST

Just a super quick post.... CNN International is airing a live segment on a beautiful woman who just recently had a beautiful baby girl named Nella who happens to have Down syndrome. Many of you reading this already know about Kelle and her blog...particularly her birth story, which could not be any more raw and honest and well...tear jerking because I related so well with her words and emotions as she learned of her baby's diagnosis...okay so I actually was body shake bawled through it! ;)..but that's not the point, the point is that literally thousands and thousands of people have found her blog from all over the world and CNN caught wind of it and well, today she will be featured! BTW....little Nella is still just weeks old, that's how fresh and amazing all of this is.

Anyway...CNN asked for comments and questions to be posted to their site and well CNN you little stinker you, you didn't post my comment, it didn't make the ranks I suppose, maybe perhaps because my comment contained the A word...abortion. I mentioned in my note how touched I have been by the comments people have left on her birth story post...beautiful, heart wrenching, encouraging comments by people who have not even been touched in some way by Down syndrome but somehow by sweet little Nella's birth she has given people a window into seeing beauty for the first time, instead of stereotypes.

I then went on to say that perhaps my favorite comments have been by women who have just recently received a diagnosis of Down syndrome for the baby they were carrying and that by reading Kelle's story they have found strength to carry on with their pregnancy. That is so huge because...and here comes the A word which probably got me knocked out of the running to be published, but I noted that over 90% of these babies are aborted. To me that number is not a pro-life or pro-abortion issue, but I believe it to be an "I am scared and misinformed" issue. Not to say that it isn't scary and heartbreaking, at first. I was right there, believe me. However, I soo wish that families just receiving a diagnosis would not only receive facts about Down syndrome but that it would be coupled with exposure to families who are raising children with Down syndrome, to see the whole picture...to see beyond the initial diagnosis. To me the 90% number says that there is still the thought that our children are burdens, but if you ask a parent who is raising a child with Down syndrome you would not hear us say that, quite the opposite.... Giving exposure to the world through little Nella just might help make that happen. Soooo, CNN even though you didn't publish my comment ;) I am ever so grateful you saw beauty in this story, in this life as so many of us do!

...And in closing I said, that I was looking forward to watching and cheering on another mom wearing wooden shoes (a Welcome to Holland reference)... seriously, I thought that was a kicky kind of way to end my thoughts..a shoo in to be published...I am not bitter though, I'm not, really! ;)

Okay...so go set your DVR's or watch it live on CNN International! (that's channel 105 for those with Verizon Fios)