What inspires you?

Sometimes its a person, a quote or a song.  Sometimes its a poem or a story.  Mended Little Hearts strives to inspire hope in the children and adults dealing with congenital heart defects.

I wanted to share some of the writings that have been making the internet and email circuit.  “The Day I Became a Heart Mother” and “Welcome to Holland,” speak directly to many parents of children with CHD.

Let us know what inspires you!

The Day I Became a Heart Mother

By Stephanie Husted

One day my world came crashing down,
I’ll never be the same.
They told me that my child was sick.
I thought, “am I to blame”?
I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child’s bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he’s here,
but my heart begs, “PLEASE let him stay”!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will he be alright?”, to watching him reach out his hands.
With every smile my heart just melts, despite life’s harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It’s the door to his beautiful heart).
God must have known how much I’d love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

“Welcome to Holland”

By Emily Perl Kingsley, 1987.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”  But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

1 Comment

Filed under Hope and Support, Uncategorized

One Response to What inspires you?

  1. Here’s another great poem!

    Poem from a “Heart Mom”
    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-ays 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…
    (She 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 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’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.

    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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