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.

Tuesday 6 January 2009

Whats it like to have a child with 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

3 comments:

  1. Thats so true and so good too, good to see you blogging :o) Xxx

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  2. If it gives you hope - and I hope it will, I used to work with an 18 year old girl who had this problem and she grew up to lead a normal life and just had to be careful about a couple of things. Good luck!

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  3. Hi Im a mum to rheumatoid arthritis kid.... :) i understand so much of what you are going thru even tho our kids are very very different.

    I hope you dont mind if i borrow your list and use it to explain arthritis :)

    ReplyDelete

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