Friday, February 12, 2016

CHD Awareness Week

This week has been Congenital Heart Defect Awareness Week.  My daughter's son is our little heart warrior, meaning he was born with a CHD. Did you know that CHD is the number one cause of death in childhood today? Yes, one in every 110 children born has a congenital heart defect. It is not a disease, it is a genetic defect.
(The poems on this blog were written during the time when our little heart warrior was recovering from his surgery, at 4 months of age.)

      Open Heart

The child appears whole,
doing the things that life requires
as he did before it happened,
before the sleep and the knife.

But in the depths of his heart
he is raw and healing,
even as he breathes
and smiles 
and sleeps.

Do not let pain or fear
rule the day, 
little man.
Keep breathing,
one breath and then the next,
hearts heal, given time.
Keep breathing,
please.... please.

If you will,
I will. 

***********************
Here is an excerpt from Audra's blog.


"The thing about heart warriors is they do not remember the beginning of their journey. They have no memory of the long wait for the cardiologist to come back to the room and crush our dreams. They don't remember the hours when their hearts did not beat, while a surgeon held them in their hands. They are warriors because they survived so much, while being so little very little. They are warriors because they bear battle scars for all to see. And they are warriors because the thing about a CHD diagnosis is that it is a life long battle. Holes can be patched, valves can be replaced, and all sorts of other miracles can happen to the human heart, but for the rest of their lives their heart history will follow them. Zane can never get life insurance and until recently health insurance was not guaranteed to adults with a pre-exisiting condition. All congenital heart defects are pre-exisiting, they existed before they were born. The battle to keep this right to insurance is sure to continue in the political world for years to come. This just one example of another battle our warriors will have to fight. They are warriors because the battles continue forever. They keep conquering, keep beating the odds, keep being brave, and keep fighting a fight for which they never volunteered." 

If you are interested in donating to help fund ongoing research for CHD, here are three of her favorite sites for donation. 
Mended Little Hearts. This is who I do the Roar-N-Race with during CHD awareness week. They are a wonderful resource for heart families and deliver bravery bags to heart families who are in the hospital. The one that I donate to where most of the money goes to research into ways to treat CHD is The Children's Heart Foundation. And lastly, we donate to Samaritan's Purse which is a world medical mission that helps people in other countries have access to life-saving open heart surgery for their little heart warriors." 

A Mother's Love

A mother's love is fierce and all consuming,
knowing neither fear nor boundaries.
It is powerful beyond imagining
 and faces fire
 and fate without flinching.

I tell my daughter that her child needs her
to be powerful and courageous;
that the child feeds on the courage of the mother.
I look into her eyes and tell her this
because she is my child, 
as he is hers,
this darling whose
heart is fighting to beat.

Love is not emotion, it is conviction,
it is strength of purpose and will,
it is the threads of life woven tightly together
and dyed in the colors of life,
 bright and dark together,
an unbreakable weave.

All the love that we have discovered,
flows from the source of life itself,
that roar of holiness 
which cannotbe named.

Put on the necessary armor, 
stand resolved in love,
 and walk bravely into the loom,
holding in your heart
the spirit of your child.
All who have ever loved,
 walk with you.

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