I don't know who wrote this, but its beautiful to me because it describes EVERYTHING we have gone through. Its amazing that I can relate to each and every line of this poem and it speaks directly to my heart and for my heart. It describes everything perfectly...the trials we went through in the beginning of this journey: the worry, the uncertainty, the fear and the self doubt. All the physical things we go through on a daily basis like giving boat loads of meds, checking for blue fingers and lips, making sure they're breathing right while sleeping, CONSTANTLY calling the pediatrician's and cardiologist's office and that horrible feeding tube!!......and then the surgeries and hospitalizations and all the feelings that those bring out....and the positive things: the friends we've made through this that share our thoughts and emotions.....and the hope and trust and confidence we have now. Its all exposed in this simple poem. It amazes me every time I read it, so I'm sure this won't be the last time I share it.
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 heart 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 calls 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
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