Wednesday, February 10, 2010

Making a Difference

I have been silent this week so far.  Not for any other reason but that I am overwhelmed.  I don't mean overwhelmed in the sense that I have too many things to do (which I do, but what else is new?!)  But overwhelmed with wanting to make a difference.  Congenital heart disease has become a part of our family.  We didn't ask for it.  But we deal with it on a day to day basis, because it is the hand we've been dealt.  We have learned to be thankful for the positive changes it has brought to our family, and our relationships.  It has given us a purpose.  Something we believe in so strongly that we want to do all we can to fight in honor of our son, and so many others.

So February is a big month for us.  It is heart month.  CHD Awareness week is Feb 7-14.  It's official in Iowa.  Governor Culver signed a proclamation declaring it so.  Some of you may remember Andrew meeting Gov. Culver at the Heart Ball a year ago.  Andrew was honored as a "Heart Hero."
Andrew has been honored in so many ways, and we are so grateful that our family has been able to make an impact, even if in a small way.
We have walked in every Heartwalk, and diligently worked to raise money for the American Heart Association.  Andrew was honored as the Heartwalk Ambassador in 2008.
Every year our team grows more and more, and so do the funds we raise.

I have totaled up the amount of dollars our team, Act for Andrew, has raised over the past 3 years...we have raised just under $7,000!  Isn't that amazing??  It is because of the generosity of so many of you, who have been touched by Andrew's story, or someone you love has been affected by heart disease.

Our family has been asked to speak at events to raise money for the AHA, like the Executive Leadership Breakfast last year.

We love getting involved.  We love spreading awareness for CHD's, the #1 birth defect.
Did you know....
• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birth defect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• There are an estimated 2,000,000 CHD survivors in the United States.
• For the first time, more than 50% of the CHD survivors are adults.
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.
• 91,000 life years are lost each year in this country due to congenital heart defects.
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
So why does it still feel like I'm not doing enough?  Maybe it is because there is still no cure, babies are still being born with CHD's, and too many are lost to CHD's each year.  How can we ever say we are doing enough until a cure is found?

The truth is, I want to do so much.  I want to help in a BIG way.  That is why I am overwhelmed.  I am just one person.  We are just one family.  How can we possibly make a difference?

That reminded me of the Starfish Story...
Once a man was walking along a beach. The sun was shining and it was a beautiful day. Off in the distance he could see a person going back and forth between the surf's edge and and the beach. Back and forth this person went. As the man approached he could see that there were hundreds of starfish stranded on the sand as the result of the natural action of the tide.
The man was stuck by the the apparent futility of the task. There were far too many starfish. Many of them were sure to perish. As he approached the person continued the task of picking up starfish one by one and throwing them into the surf.
As he came up to the person he said, "You must be crazy. There are thousands of miles of beach covered with starfish. You can't possibly make a difference." The person looked at the man. He then stooped down and pick up one more starfish and threw it back into the ocean. He turned back to the man and said, 

"It made a difference to that one!"

So, when I'm feeling overwhelmed to make a difference, I need to remember that everything we do makes a difference.  In a few short months, Andrew is going to be turned over to the surgeons for the third time in his life.  I like to think that in the three years since he's been born, that the $7,000 we've raised has made a difference in the progress of education and research of CHD's, and that his next surgery's success will be a direct result of those efforts.  I like to think that the people we've spoken with, talks we've given, people who have been touched by Andrew's story have helped spread awareness so that there is just one more person out there who didn't know about CHD's before, but they do now.

I like to think we've made a difference.  
And it is all because of one very special little boy.
Who makes a pretty big difference all on his own.

Please visit my friend Stef's blog to see the article she wrote about Andrew and posted on her blog today in honor of CHD week.


Mary said...

Jen, I just wanted to let you know that you have taught be so much in the past three years. Craig's and your strength is amazing. I just wanted to let you know that for my bulletin board for this month I put up all the stats you posted for heart month. So not only have you touched me with your knowledge and strength but your story has also touched my students. I put up my bulletin board this past month for Andrew, it's not the greatest but it's a start and my student's are starting to learn more about CHDs. I'm hoping next year to make it even better to teach my students like you have taught me.
With prayers and love,

jflannery said...

Powerful post, Jen. And you're right...every difference made is a difference in the fight against CHD. I agree, this is an overwhelming week. I've been feeling this odd sense of urgency to promote CHD Awareness Week and yet just one heartfelt email from a friend reminded me that no voice is to small because when put together with all of these other amazing voices, great things will happen.

We'd love to get involved in the Des Moines Heart Walk this year. Please send me an email if you don't mind. Last year Leah was in surgery and I remember thinking about you and your family that day. You inspire.

Party of Five said...

Awesome post. Hopefully soon things will work out for us...we would love to be part of Andrew's heartwalk team. We still wear our shirts though! Nice pictures too...I actually know the lady in the background of the picture of Andrew with the Gov. I used to swim with her daughter. I swear that is her anyway, but I could be wrong. Hope you are having a good week!

Stefenie said...

A beautiful post Jen and I LOVED the Starfish story. Thanks for sharing that!

Stef, Ryan, Wyatt and Logan

The Carter's said...

That was a great post! I, too, feel that there is just so much to do, to say, to change. It's overwhelming, but with all of us doing our "little" things, hopefully some day it'll make a BIG difference.

Great job "Act for Andrew!!"


Lucky10 said...

I came across your blog today. Glad to hear that Andrew is doing so well. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
Thanks so much and we look forward to reading more on your blog!
Vito Lisa

P.S. If you want to keep up with Cassidy’s journey here is her Carepage info: , Page name: cassidylisa

Crystal said...

Great post!!

It is so awesome what you are doing!!

Crystal (heart mom)

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