Thursday, January 19, 2012

Paying it forward...again

I wrote a post in the past that asked myself if I was doing enough to raise awareness about Down syndrome. I want to educate myself, family, friends, and others. But I don't want to cross the line into annoying. I'm sure I've lost a few Facebook friends since posting this blog and explaining that Harper has Down syndrome. I do know that this blog has brought out old friends and many new friends. I hope that I have been able to "teach" others about Ds but I especially hope that I've made you, the readers, look at Down syndrome as a blessing and not a burden.

As difficult as the last 4 1/2 months have been....HARPER IS NOT A BURDEN AND SHE WILL LIVE A QUALITY LIFE. If you are a friend of mine on Facebook then you saw that I posted a link sharing the story of Amelia. Amelia does not have Ds but has Wolf Hircshhorn Syndrome. She needs a kidney Transplant and the Children's Hospital of Philadelphia (CHOP) said she was not eligible because she is mentally retarded. That was the dagger in my heart. That could have been Harper. Even though Harper may be delayed does not mean she shouldn't be treated the same as anyone else. And neither should Amelia. Amelia's story blew up the internet. And I mean blew up. CHOP's Facebook page was filled with messages and a petition is also going around. The story has been featured on the Today show, NBC nightly news, CNN etc. CHOP has issued 3 statements and Amelia's family has  since been contacted by CHOP to come back in and to discuss a family donor transplant. I believe this action at CHOP is not a full representation of the hospital but a few insensitive doctors trying to sweep this under the rug. 

Yes, Amelia's future will be filled with doctor appointments, physical therapy, and many other "extras" but so does a child with a peanut allergy, a learning disability, or behavior problems. Harper's future is unwritten. She gets to write it and yes it will include doctor appointments, physical therapy, sign language etc. But so what? Harper has an extra chromosome and it makes her....her. She will lead a beautiful life and Amelia will as well.

She is newly mesmerized with her hand!

This past week I have witness a blog miracle. One little blog post from went viral and Noah and his dad are now making the rounds on all national news outlets. It's amazing. His post: how Target did tons by not saying anything about their model Ryan who has Down syndrome. Seriously, the buzz is amazing. Follow him on Facebook or his blog and you can keep up with the crazy adventure he has been on in the past week. That post could have been any of us. But it doesn't matter. Do I wish it was me? Sure. But his voice is just as good as my voice.

There is still time to donate to Nella's 2 for 2 Fund. You can find the info here. You don't have to donate much. $5 will go a long way. I donated this morning and it was in honor of Harper. You don't know Nella. Hell, I don't even really know Nella but have followed her journey since last May and by gosh I feel like I know Nella. Do it in honor of Harper and all the other kids that have Down syndrome you may know. Every $ will help raise awareness for Down syndrome.

Watch this video! 

As I write this post I realized that I've changed. I've always cared about people but I have morphed into an advocate. When did that happen? Then I remember that the little girl who is asleep in front of me made that happen. Not only am I her advocate but I have the back of all of Harper's designer gene sisters and brothers out there. They need as many voices as possible and I plan on making my voice loud and proud!

This post goes along with my "pay it forward" attitude.  If you are tired of my loud and proud advocate voice then, by all means, feel free to stop following me. I'm not preaching. I'm informing. Love it or leave it.


Mama Bird said...

Harper has changed more than just you! She has changed me a lot too! She has changed the way I feel about not only those born with that extra special chromosome but all of those who love them (their parents). I am much more accepting, less judgemental and more supportive. It is amazing how becoming a parent changes a person! Thanks H!

Heidi Ehle said...

I have to say that one of the defining moments in my own journey came during a phone conversation with my best friend (of the last 10 years). As I was gushing on and on about this and that, she interrupted and said, "Oh Heidi. You have changed so much....and I love it!"
I stopped and thought for a long time on the changes that tiny Lydia has made in my life and I decided that yes, although I have changed a whole LOT, I too love the changes that she has made in me. I am a better person...a better mom, a better daughter,sister, a better friend, all because the immense love I have for my child spills over onto everything I touch.
Keep doing what you're doing, Kaiti. You're doing GREAT! Those who truly love you will be just as proud of the changes in you as all of us other mamas are! :)

Marci said...

I'm lovin it! :)

lovemy3 said...

She's absolutely beautiful! I hope we can all change the minds of the person at a time!

Shona Bolden said...

I think it's great and it's so great to see Harper doing so well post surgery. I hope your shingles ease up on you. Power on and keep paying it forward! (My all time favorite movie!)