CHD Awareness Week

Today starts National Congenital Heart Defect Awareness week. About 1 in every 100 children born will have some type of CHD. Peyton was born with Hypoplastic Left Heart Syndrome and diagnosed at about 10 hours after being born. He has undergone three heart surgeries, two non-heart surgeries, multiple heart caths, testing, and Cardiology visits. We love you Peyton and couldn't have asked for a better little 4 year old. We are so lucky to have you here with us!



And, in honor of CHD week, here's a poem that I like!

What is 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 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-rays 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…
(He 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
--Shannon Arnold Smith