Friday, January 6, 2012

CHD Awareness Poem

Your help is needed
And that’s not all,
we need awareness,
for the little and small.

We need your help,
to spread the word ...
of congenital heart defects,
for little have heard!

This is a deadly defect,
affecting many that are born,
turning lives upside down ..
leaving dreams shattered and torn.

Congenital heart defects,
known as CHD's,
are the #1 birth defect,
but a hidden disease.

Doses of medicine,
many times each day,
a little child,
that can't run or play,
his little heart,
can't take the stress,
his little body
just needs to rest.

A little baby
that struggles to eat,
with tiny blue lips,
and hands, and feet.
A mother stands by
her baby's grave,
praying through research,
others will be saved!

Written by Angela Brooks

Thursday, January 5, 2012

What's a CHD?

What's a CHD ?

You passed me in the shopping mall...(You read my faded tee)

You tapped me on the shoulder...Then asked...`"What's a CHD?"

I could quote terminology...There's stats that I could give...

But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD? it's Lasix,aspirin,Captopril...

It's wondering...Lord what's your will?...It's monitors and oxygen tanks...

It's a constant reminder...to always give thanks...

It's feeding tubes, calories, needed weight gain...

It's the drama of eating...and yes it's insane!

It's the first time I held her...(I'd waited so long)

It's knowing that I need...to help her grow strong...

It's making a hospital...home for awhile...

It's seeing my reward...in every smile.

It's checking her sats...as the feeding pump's beeping...

It's knowing that there... is just no time for sleeping...

It's caths,x-rays and boo boos to kiss...

It's normalcy...I sometimes miss...

It's asking...do her nails look blue?

It's cringing inside... at what she's been through.

It's dozens of call to her pediatrician...

(She knows me by name...I'm a mom on a mission)

It's winter's homebound...and hand sanitizer...

It's knowing this journey...has made me much wiser.

It's watching her sleeping...her breathing is steady...

It's surgery day...and I'll never be ready.

It's handing her over...( I'm still not prepared...)

It's knowing that her heart... must be repaired...

It's waiting for news...on that long stressful day...

It's ...praying...it's hoping...that she'll be okay.

It's the wonderful friends... with whom I've connected...

It's the bond that we share...it was so unexpected...

It's that long faded scar... down my child's small chest...

It's touching it gently...and knowing we're blessed...

It's watching her chasing...a small butterfly...

It's the moment I realized...I've stopped asking...why?

It's the snowflakes that fall...on a cold winter's day...

(They remind me of those...who aren't with us today)

It's a brave little boy...who loved Thomas the train...

Or a special heart bear...or a frog in the rain....

It's the need to remember...we are all in this plight....

It's their lives that remind us... we still need to fight!

It's in pushing ahead amidst every sorrow...

It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...

It's changed our family...

This is what we face each day...

This is...a CHD

Tuesday, January 3, 2012

Starting Over

For the longest time I would just blog about "C" and his special heart and his recent diagnosis of  sensory processing disorder, but really we are a family of FIVE and we are on this roller coaster ride together.  So this time I really need to blog about how it doesn't only effect "C" but how it plays apart in the whole family.
 So yes I am once again starting my blog over, please follow our journey if you would like, don't be shy either.. feel free to leave comments..we appreciate every one's input.

                                      ♥ "S" ♥