What is it like have a child with a CHD?

What is it like 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 so I must stay 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, echos, 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 calls to his pediatrician…(He knows me by name…I’m a mom on a mission) It’s winters home bound…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 I'm 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 loves Thomas the train…Or a special heart bear…or a frog in the rain…. It’s the need to remember…we’re 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.
Author: Stephanie Husted

 

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