Congenital Heart Defect Awareness Week

Today is the first day of Congenital Heart Defect Awareness Week! I have posed several posts on statistics, history of pediatric cardiology, and our own experiences with Congenital Heart Defects. This cause is really important to my heart. I wanted to share some news from our Mended Little Heart coordinator, Jaime. This is her email:

Mended Little Hearts has been working with the American Heart Association so that they understand how the CHD Community feels about the lack of awareness. Today, they put a ticker the top of the their national website (www.americanheart. org) about CHD Awareness Week. It links to info about CHD, and that page has a link to Mended Little Hearts. Not only that, but they sent a press release to all of their affiliates about CHD Week and about MHI and MLH. It is fabulous!!! This is huge compared to what we had in the past--very huge.

Obviously some huge steps :-) I have not heard word about the tv campaign adds but will definitely let everyone know if that works out!!! Right now, AHA only donates 1 cent of every dollar to CHD!!! Things could be SO much better with a little awareness. I don't need to spit off more statistics for why this is true. I do want to post a poem written by a mother, Stephanie who has a daughter who has gone through 3 open heart surgeries and is still hoping for a complete repair.

While I feel sooooo blessed that Parker's heart is completely repaired, it still makes me sad that there are so many families living day to day with fear! I think this poem by Stephanie expresses what life is like for these families.


You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a 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 him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his 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 him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'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 him 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.