Jacob's Journey: CHD Awareness 2011

Sunday, February 13, 2011

CHD Awareness 2011

CHD Awareness week is coming to an end tomorrow...

but don't worry, I intend on spreading awareness to everyone I know 365 days a year! Our children need us to be their voice. Please help me in educating all of your friends and family about Congenital Heart Defects and lets help find a cure for this silent killer. Its simple. Just let people know that 1 in 100 babies are born with a CHD.

Awareness=Funding. Funding=HOPE!

We love you baby Jacob. I will never stop fighting for you!

AWARENESS VIDEOS 2011.
Please take a moment to watch these videos and learn about the #1 birth defect!

1 comment:

Elizabeth TrandelFebruary 15, 2011 at 4:11 PM
Dear Baker Family,

We need your help! In 2009, Genetic Alliance was awarded a cooperative agreement to implement sections of the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Through this agreement we launched the Congenital Conditions Program, a program that focuses on connecting families who receive a diagnosis for their child prenatally or within the child’s first year of life with information and support. We are currently developing multiple publications for this program; one of these is a compilation of stories that focuses on receiving a diagnosis of a congenital condition.

Genetic Alliance needs your story about receiving a diagnosis of a congenital condition for this compilation! We recognize the importance of sharing stories as a way to share one’s experiences and believe that yours will make a great addition to the publication. By collecting such stories, we believe we will obtain an understanding of the strengths and weaknesses of the current system of information and support for families receiving a diagnosis and where improvements might be made in the future.

You can learn more about the Congenital Conditions Program and the stories compilation at www.geneticalliance.org/congenital. All stories must be submitted be February 28th. To find out how to share your stories for inclusion in the publication, please email Alyson Krokosky at akrokosky@geneticalliance.org.

Thank you,
Elizabeth

Programs Intern
Genetic Alliance | 4301 Connecticut Avenue, NW | Suite 404 | Washington, DC 20008
Phone: 202.966.5557 x240 | Fax: 202.966.8553
etrandel@geneticalliance.org | http://www.geneticalliance.org
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When I became a heart mother...

One day my world
came crashing down,
I'll never be the same.
They told me that
my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart
was breaking...
As, I'd loved her for so long.
I will not give up on this child...
despite your best "advice".
I will give my child a chance...
No matter what the price.
And I will learn all that I need...
to help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...
I will not curse our fate.
The feeding pump beeps,
at 3:00 a.m.
It serves as my reminder...
How many parents would
welcome that sound?
Tomorrow Lord,
I will be kinder.
Another angel earns
their wings...
and I run to my sleeping
child's bed...
I watch her then, for
quite awhile...
Bend down and kiss her head
Then I cry for the parents
whose lives have been broken,
And I look to God
wondering why?
Oh Lord, I just can't
know your ways...
No matter how I try.
And yet, I trust You to
hold her life,
And guide us through
each day
My mind says savor each
moment she's here...
But my heart whispers,
"Please let her stay".
From... pacing the
surgical waiting room...
to sitting by her hospital bed...
From... wishing for a
good night's sleep...
to learning every med...
From wondering will
she be alright?
to watching her reach
out her hands.
With every smile, my
heart just melts..
despite life's harsh demands
For all who see
that faded line...
I look to them and smile...
You see, my child is
loved so much...
I would face any trial.
That same scar I trace
with my finger...
It's the door to her
beautiful heart
I never guessed how
much I'd love her...
Just as YOU loved her
right from the start
A heart mom is
always a heart mom...
Now wise beyond her years
And for those who have
angels in heaven...
Our hearts share in
all of your tears.
Everyday I will strive
to remember...
You chose me for her
and no other
And I will embrace
that beautiful day...
When I became a "heart mother".
~Stephanie Husted

What does it mean to be a mother?

It's that very first moment,
He's placed in your arms,
A wrinkled red face,
Filled with so many charms,
You can't help but cry,
(As a new mother knows)
You've been waiting so long,
Just to count all his toes,
Then visitors come,
Bearing gifts that are blue,
And they laugh, and snap pictures,
Saying, "He looks like you."
And in just a few days,
(Ahh... the joy and the fun)
You'll be on your way home,
With your beautiful son.

What is it like to be a heart mother?
Again, it's that moment,
You hold your child close,
And cry secret tears,
That a heart mother knows.
In just a few days,
Maybe less,maybe more,
You'll be letting him go,
Asking, what lies in store?
And as your child lays,
In a small isolette,
You think to yourself,
I must not get upset,
And as family arrives,
You try hard to stay strong,
But your tired eyes say,
That this all seems so wrong.
You know what is coming,
Though your still not prepared,
He will leave your safe arms,
To have his heart repaired.

What does it mean to be a mother?
It is nights with no sleep,
It is feedings and spit up,
It is watching him roll,
And then finally sit up.
It is knowing this child,
Depends on you most,
It's those everyday milestones,
in which, you can boast.
And yes... there is crying,
(At time's it's quite loud)
But when he says,, "Mama".
He makes you so proud.

A heart mother...
Ahh.. yes little rest,
As the monitors beep,
And you begin to question,
Is there such thing as sleep?
And you can't go home yet,
And your kid's ask each day,
"Will we see you soon mommy?
Can you come home and play?
Real soon... you promise,
Yes...I miss you too",
And then people ask,
How you do what you do.
And you stroke his forehead,
And his fist is unfurled,
And you know for this child,
You would give all the world.

A mother...
Time passes quickly,
Soon he's off to school,
And before you know it,
Hugs just aren't "cool",
He's a teenager now,
With dreams of his own,
And one day it hits you,
My child, has grown.
And though you are proud,
For all he's achieved,
Life passed more quicly,
Than you could have believed.

A heart mother...
You've always strived to live each day,
As if it were the last,
As the mother of a heart child,
You know things can change fast.
You've seen so many familes,
Endure things you can't understand,
And while you trust that God is good,
Sometimes you just don't understand.
But you go on, because you must,
God chose you for him, and no other,
Your stronger that you could imagine,
You have become a heart mother.

Every mother...
And every mother's journey,
Begins on that day when,
She knows with everything she is,
A mother, she has always been.
Crayon marks cover all the walls,
Muddy prints scatter the floor,
Toys and messes everywhere,
And yes... laundry galore.
I must have the best job that there is,
(Despite all the clutter and mess)
My children.. they remind me,
Life shouldn't be such a stress.
Each and every day we have,
(To laugh, to hug, to play)
Is a memory I'll always have,
And nothing, can take that away.
I wouldn't trade a moment,
Or all that they've taught me to see,
I'm blessed to be a mother,
It's more than I'd dreamed it could be.

~Stephanie Husted

Sunday, February 13, 2011

CHD Awareness 2011

1 comment:

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