Balloon Launch - October 3rd, 2009
A strong wind helped to spread our message. Balloons all over the country went flying on Saturday in an effort to make more people aware of Congenital Heart Defects.
CHD is the #1 birth defect
1 in 100 babies born this year will have CHD
There are more than 40 different types of CHDs.
Little is known about the cause of most of them.
There is no known prevention or cure for any of them.
The poem I read was by Nicole Roberts, her son also passed away from CHD. Thank You Nicole for sharing this with me. It was perfect.
THE CHD ZONE by Nicole Roberts
Sometimes I want to stand up and yell;
“Listen to me I have something to tell,
About a disease that takes young inspiring lives,
And only 80%, it inflicts, survives.
This is not a good statistic, you see,
Because one that didn’t survive was part of me.
He was my son and my beacon of light.
He was pure beauty and his Dad’s delight.
He was our Nicholas, our heart, our joy.
He was our beautiful, beautiful boy.
He was one of 8,000 to die this year.
He was one of 8,000 to go to God’s care.
That is too many to go before they turn one.
That is too many parents who will mourn a son,
Or a daughter, if the case may be.
There are too many parents just like me!
We don’t want any more to join our grief.
We want those fighting to get some relief.
We need to make a dedicated stand.
We need to lend a helping hand.
Nicholas sleeps now in eternal rest,
But CHD awareness still needs our best.
It needs us to continue on our mission,
To make aware those that will listen.”
Before Nicholas, I did not know of CHD.
I did not know the effect it would have on me.
I knew not of the inner walls of the CICU.
And of the strength I would get from all of you.
I did not know that our “home” would be,
The only place we could gather our family.
It would be inside the hospital walls.
It would be amidst code blue calls.
Life would take us on a fearful ride,
But one we insisted on taking in stride.
It would allow us to meet parents who show,
Wherever your child leads, you must go.
An unselfish group in a club all our own,
We had entered the CHD zone,
A place where miracles are constantly achieved,
And the loss of one is so sincerely grieved.
Life brought us to a world we could never have dreamt,
And a beautiful baby showed us what it all meant.
He was the center of this incredible space,
The reason for our time in this place.
Our son Nicholas made it all worthwhile.
He made us believe with his powerful smile,
There was nothing in this world we can’t do.
He truly did pull us all through.
He showed us that each second of life is meant to be lived.
And happiness is such a precious gift to give.
He gave of himself in an unselfish way.
And we thank God, as we pray;
“We thank You for the wonderful time with our son.
We thank You for the blessings and all You has done.
We thank You for choosing Mike and I.
What were Your reasons? We don’t know why.”
We are humbled by being God’s choice.
We are humbled by being Nicholas’ voice.
We believe there was a reason for it all,
We believe CHD is our call.
You all know by now what is a CHD,
But have you told another family?
Knowledge is meant to be shared.
Special hearts are meant to be repaired.
Have you told someone you know,
So that CHD awareness may grow?
Share your knowledge base,
So CHD ignorance, we can erase.
Have you mentioned that 40,000 babies a year,
Have precious hearts that will receive special care?
Have you mentioned their hearts will not develop the normal way,
And their life may not be okay?
8,000 of these babies will not survive.
32,000 will celebrate their lives.
There is so much more we can do,
We can help more to pull through.
We can make many more people aware,
We can show others we care.
Let’s make Nicholas’ legacy show,
By making CHD awareness grow.
If we all do our own parts,
We can save more special hearts.
We can give a family a chance,
To watch their child play and dance.
Nicholas has showed us we can all have an impact.
Nicholas has made us aware of that fact.
We can not look the other way,
This will not make the fatalities go away!
It is ok to stand up and yell
“Listen to me, I something to tell:
It is of my son, of his life, of our joy.
It is of the loss of our baby boy.
His name was Nicholas and his eyes were blue,
His smile was infectious and his soul was true.
But his heart was special and was too hard to repair,
And so he is now in God’s wonderful care.”
But Nicholas did not need to go in vain
And helping others can ease the pain
Of my empty heart from this incredible loss
So won’t you help me get the point across?
Won’t you stand up and yell with me?
So that the world is aware of CHD?
Before Nicholas, I did not know of CHD
Now, its future is part of me.
Remember to email me your pics at littleheartthatcould@hotmail.com !!
