Family Support

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Learning of their child’s heart disease and possible need for heart surgery leaves parents shocked, overwhelmed. Our goal is to help these families during this uncertain and stressful time.

When a child is in the hospital, particularly with a life-threatening heart problem, the dynamics of the entire family are sorely interrupted. No one knows this better than the volunteers with the Children’s Heart Program Volunteer Council. That’s why the backbone of the CHPVC is the Family Support Program. The CHPVC members understand the concerns and fears of other parents affected by childhood heart disease. Family support volunteers are here to help parents because they have been there… right where thousands of other families have sat as their child was in surgery. They have watched the same monitors and listened for the same beeps. They have looked out the same window as the world busily continues on, anxious about how critical the next several hours-days are for their child.

Members of the Family Support Team offer hope to parents and families – not a false hope that everything will be fine but instead, living proof that families do survive and that others really do understand how they feel. Our volunteers continuously put the fears of reliving those traumatic memories behind them to help others. Even with their child’s appointments, therapies, school activities, topped with their own careers, church activities, and family responsibilities, these dedicated volunteers still find time to help other children and their families.

Families of children with special hearts can be in direct contact with a Family Support Team member and request hospital visitation, parent to parent matching, talking to siblings, and bereavement support by calling 706-414-4228.

 

CHPVC provides theraputic heart pillows for pediatric cardiothoracic surgery patients.

 

New Ellenton, South Carolina’s St. Paul United Methodist Church provides inspiration to heart families as their child undergoes heart surgery with handmade ceramic hearts blessed and donated to the CHPVC.

A heart mom’s story…

The memory of her child’s surgery is still very fresh in her mind. And one memory stands out: Before Opal’s surgery, a local church gave the child and her mother two small heart-shaped decorations.

“They leave one heart with the child and one with the momm­­­a,” she said, fighting back tears. “And my heart had a hole in it, a hole in the shape of a heart. And that part was with her. When we were reunited after her surgery we put the two pieces back together. It made all the difference in the world to me, while she was in that surgery, to have that heart to hold onto.”

 

 http://chronicle.augusta.com/news/health/2011-02-13/heart-surgery-day-after-girls-birth-helps-blood-get-lungs

 

Inspiration                                                                                        

 

 

Hilton Head Heroes www.hhheroes.com

 

Make-A-Wish www.wish.org

 

Songs of Love www.songsoflove.org

 

Adventures of a Funky Heart! http://tricuspid.wordpress.com

 

Welcome to Holland

Written by Emily Perl Kingsley

 

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. 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, 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.”

The pain of that will never, ever, go away, because the loss of that dream is a 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.

 

I’ll Lend You for a Little Time a Child of Mine

Edgar Guest

 

“I’ll lend you for a little time a child of mine,” He said.

“For you to love the while he lives and mourn when he is dead,

“It may be six or seven years, or twenty-two or three.

“But will you, till I call him back, take care of him for me?

“He’ll bring his charms to gladden you, but should his stay be brief,

“You’ll have his lovely memories, as solace for your grief,

“I cannot promise he will stay, since all from earth return,

“But there are lessons taught down there I want this child to learn.

“I’ve looked the wide world over in my search for teachers true,

“And from the throngs that crowd life’s lanes I have selected you.

“Now will you give him all your love, nor think the labor vain,

“Nor hate me when I come to call to take him back again?

I fancied that I heard them say: Dear Lord, Thy will be done!

“For all the joy Thy child shall bring, the risk of grief we’ll run.

We’ll shelter him with tenderness: we’ll love him while we may,

And for happiness we’ve known forever grateful stay.

“But should the angels call for him much sooner than we’d planned.

“We’ll brave the bitter grief that comes and try to understand.”

 

What is it like to have a child with a CHD?

Written by fellow heart mom, Stephanie Husted

 

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-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 call to his cardiologists..

(They know 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 t he 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.

 

Sweet Child

by Unknown Author

 

God made a sweet child

a child who never grew old

He made a smile of sunshine

He molded a heart of pure gold.

He made that child as close to an angel

as anyone ever could be

God made a Sweet Child

and he gave that dear child to me

Then God saw His wonderful creation

growing very tired and weak

so He wrapped the child in His loving arms

and said, “You my child I keep”

But now my Sweet Child is an angel

Free from hurt and pain

I’ll love you forever, until we meet again

So many times I have missed you

So many times I have cried

If all my love could have saved you

Sweet Child you never would have died.

 

 

Somewhere, Someplace, Today

 

Somewhere…someplace… today…

A family is waiting to hear…

Is something wrong with their baby?

The answers aren’t quite clear…

This family has entered an unwanted world…

And they just don’t know what to expect…

Somewhere…someplace… today

They first heard the words: heart defect.

And how they hoped this was not true…

And thought… this cannot be…

I too… know just how this feels…

For one day…this was me.

Somewhere…someplace…today…

A man and a woman embrace…

Their baby is in surgery…

They long to see her face…

They haven’t got to hold her yet…

Without…a cord or line…

They pace the room awaiting news…

And hope she’ll be just fine.

Prayers fill this busy waiting room…

And mom and dad are scared…

Somewhere…someplace…today…

The tiniest hearts are repaired.

Somewhere…someplace…today…

A child’s growing fast…

Smiling, laughing, thriving…

His mom thinks…can this last?

It’s almost easy…to forget…

That anything is wrong…

Somewhere…someplace…today…

Her child seems so strong.

Somewhere…someplace… today…

A little boy fights…just to live

A father holds his tiny hand…

His love…is all he can give…

The doctor’s are all baffled…

They fear that he might die…

Somewhere…someplace…today…

A family says goodbye…

Somewhere…someplace…each year..

Thousands of families will see…

What it means…when something’s wrong…

They’ll face a CHD.

Today…for just a moment…

Stop…remember…reflect…

And, how you’ve been changed by a child’s heart defect.

 

 

A Time To Grieve…..A Time To Heal

 

Have you ever noticed the many mixed-up emotions involved in grieving?

On the one hand you feel restless. On the other hand, you feel like you don’t want to move at all.

You feel desperately alone, and yet you don’t want anyone around.

You feel scatterbrained, forgetful, and yet, frantically meticulous.

You feel like crying at nothing. And sometimes laughing at anything.

Being in a crowd of people is fine as long as they don’t talk to you.

And yet, if they don’t talk to you, you feel as if nobody cares.

You want so desperately for someone to mention your loved one, to remember the life that was.

And yet it can make you furious if all they want to talk about is the dead one, and never mention the living ones.

Grief settles over you like a hot blanket. You’re as cold as the winter snow.

Grief presses on you like a steam roller. You’re floating in a bubble above yourself.

Grief boxes you in on four sides and introduces you to a pain no one should have to know.

But then, once again, you begin to feel compassion.

You relate to others who have had an experience similar to your own.

And eventually, with a light as sharp as a sunburst, you hear yourself saying your loved one’s name with an unfamiliar smile on your face.

You remember some of the funny times, and feel laughter building in your throat.

One morning you notice the sun is shining, the flowers are bursting with the colors of spring.

Three seasons have passed unnoticed….

And, somehow, you are still here, even though your loved one is not there.

You feel your heart swell with a love you never even knew could exist.

And you find a place in your life for something called,

Peace………

And then, ever so gently, the memories enfold you in a warmth as soothing as a cool shower on a hot summer day,

So you find you want to remember and tender memories of love lift you to unreachable heights,

to the brightest of stars.

A Time to Grieve…A Time to Heal

 

 

The Story of the Butterfly

 

A man found a cocoon of a butterfly.

One day a small opening appeared.

He sat and watched the butterfly for several hours

as it struggled to squeeze its body through the tiny hole.

Then it stopped, as if it couldn’t go further.

So the man decided to help the butterfly.

He took a pair of scissors and

snipped off the remaining bits of cocoon.

The butterfly emerged easily but

it had a swollen body and shriveled wings.

The man continued to watch it,

expecting that any minute the wings would enlarge

and expand enough to support the body,

Neither happened!

In fact the butterfly spent the rest of its life

crawling around.

It was never able to fly.

What the man in his kindness

and haste did not understand:

The restricting cocoon and the struggle

required by the butterfly to get through the opening

was a way of forcing the fluid from the body

into the wings so that it would be ready

for flight once that was achieved.

Sometimes struggles are exactly

what we need in our lives.

Going through life with no obstacles would cripple us.

We will not be as strong as we could have been

and we would never fly.

So have a nice day and struggle a little and teach well.