The Children's Heart Charity - INSPIRATION
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 INSPIRATION PAGE
 
 
 


 
 
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Look At You Now - Vanderbilt Childrens & Mark O'Shea
The Vanderbilt Children's Hospital and Mark O'Shea make a video.Get a free a mp3 at www.myspace.com/therealoshea
 
 
 
 
 
 
  
 
 
                                                         Poems about CHD by parents
 


 
A Journey of HOPE
 
One faded scar along her tiny shoulder blade
the perfect incision her surgeon made
That faded scar shows the fight for her life
Right from the start her battle of strife.
 
One faded scar along her now plump tum
Shows that this fight os never quite won
It reminds us of forty days in one little room
Praying to God he wont take her soon
 
One faded scar along the centre of her chest
the life that she has a time line a quest
She's fighting to be here but life's still full of fun
Her laughter it shows it from our perfect little one.
 
Life keeps moving the scars they will fade
No one could no the love she has made
One little girl she battles each day
But joyful she is in every way.
 
A journey of life a journey of Hope
In the begining how would we cope
Her smile drives us on it comes from the heart
Perhaps from that needed missing part!!!!!!
 
                     Hopey's Mum
                     (Zelda McLernon)
 
 
 
 
 
  
 
 
 
What does it mean to be the parent of a child with a heart defect? ©
 
It means going into your baby's room a dozen times a night j
ust to check and see if he is breathing.
 
It means standing over the crib and watching for the chest to rise and fall and when
you don't see it move you begin to panic and put your head down close to the baby's
face to try to hear him breathe.
 
It means that when you don't see the chest move and you don't hear the breathing
(because your own heart's beating is drowning out any other sound in the room)
you put your finger under the baby's nose to feel the warm air on your finger - until
you wake the baby and he stirs - and you're thankful so thankful that he's still
with you.
 
It means waking up with a start every morning, jumping out of bed and running to
your baby's room wondering why he isn't crying yet?
 
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles,
It means saying a prayer of thanks for another day.
 
It means measuring out his medication and panicking if he spits some of it out,
How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate
how much more he should have and worrying aboutovermedicating.
 
It means checking his nailbeds against your own to determine how blue he is today,
It means asking your husband, your mother, your sister, "Do his lips look blue to you?"
 
It means snuggling him in an extra blanket for fear he wont be warm enough.
 
It means worrying that even a sniffle could cause an infection that would harm the heart.
 
It means taking your baby to the doctor and then worrying that the baby will get something even worse
from being in the waiting room, so it means walking back and forth and back and forth in the
corridor
untilthe nurse calls your baby's name and takes you straight back to the examination room.
 
It means knowing that everyday is a blessing and a gift, it means knowing that you are the
luckiest person in the world just to be aparent,
It means cherishing every moment, every breath with such an intensity that you feel tears
come to your eyes for no apparent reason.
 
It means praying for a miracle to save your baby's life.
 
It means praying that your marriage is strong enough to endure the hospitalizations,
separations, and the grief.
 
It means your own heart knows a pain no parent should know.
 
It means feeling weak and helpless and angry and depressed because
yourchild's fate is out of your hands, It means feeling strong and determined
and brave because you know you have to be.
 
It means your love knows new unlimited boundaries, it means your pridein
your child's accomplishments is unparalleled,
It means your pain has taught you a deeper sense of compassion and understanding
than you everimagined.
 
It means we are united by the same feelings, it means that we all know the mixed up emotion
s of living with death-but more importantly ofliving with Life.
 
It means that even though we are strangers we are more to each other
than friends could ever be.
 
 
Author: © Anna Jaworski
Author of “Hypoplastic Left Heart Syndrome: A Handbook for Parents” and “My Brother Needs
an Operation” and editor of “The Heart of a Mother” and “The Heart of a Father”
 
published with permission of the author

  
 
 
Poem by a Heart mum
 
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 time, 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 a while...
It's seeing my reward...in every smile.
It's checking her stats...as the monitors are 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 her lips look blue?
It's cringing inside... at what she's been through.
It's dozens of calls to her pediatrician...
(He knows me by name...I'm a mom on a mission).
It's winters 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 girl...who loved her sweet Pinky...
Or a special heart bear...or her beloved little binky....
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
 
  
 
 
 
unknown title and writer
 
We've all watched our children intently...
Memorizing each line...
And let them leave our loving arms...
And prayed things would be fine.
We've paced the halls awaiting news...
And wondered just what lie in store...
We've felt our own heart's racing as...
We walked through an ICU door...
We've seen the child we love so much...
Struggling to overcome...
The lines...the cords....the monitors...
No thoughts...no words...would come...
We've prayed for an improvement...
We've laid it in God's hands..
We've cried...we've hoped...we've worried...
We've wondered of God's plans.
We've learned just how a heart works...
Each valve and artery...
We've asked alot of questions...
We've faced each surgery.
And somewhere down this well worn path...
We've met more families...
Who know exactly what it means...
To live with this disease.
We've smiled at every triumph...
And shared in every sigh...
We've prayed for a child that struggles...
And each family that must say goodbye.
Some battles are fought with bullets...
And weapons made for war...
While these are fought in silence...
Behind a hospital door...
We've wondered what lies in our future...
We've been thankful for just one more day...
We've stopped and watched with tear-filled eyes...
Our children...as they play.
We've struggled with ounces and weight gain...
Why won't my child just eat?
But heart mom's ...we're a tough group...
We've learned how to face a defeat.
We've faced those moments...others do...
When life has got us stressed...
But it doesn't take long to remember...
That we are richly blessed.
We've taken on a whole new role...
One we wouldn't exchange if we could...
We know that life is difficult...
We hold onto all that is good.
God chose each of us carefully...
I do believe he smiled...
Some bonds begin with strangers...
And just one special child