Hope For Sydney

Living on Faith.....Looking for a Miracle

Poetry Therapy....not just for Mom's!

 

TO MY CHILD

Just for this morning, I am going to smile when I see your face
and laugh when I feel like crying.

Just for this morning, I will let you choose what you want to
wear, and smile and tell you how perfect it is.

Just for this morning, I am going to step over the laundry, and
pick you up and take you to the park.

Just for this morning, I will leave the dishes in the sink, and
let YOU teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep
the computer off, and sit with you in the backyard and blow bubbles.

Just for this afternoon, I will not yell once, not even a tiny
grumble when you scream and whine for the ice cream truck,
and
I will buy us both one if he comes by!

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake
cookies, and I won't stand over you trying to fix them.

Just for this afternoon, I will take us to McDonald's and buy us both a
Happy Meal so you can have BOTH toys.

Just for this evening, I will hold you in my arms and tell you a story about when you were born and how I stared at you for hours because you were so beautiful.

Just for this evening, I will let you splash in the tub and not get upset.
Just for this evening, I will let you stay up late while we sit on the porch, eat brownies and count all the stars.

Just for this evening, I will snuggle beside you for hours,
while I miss my
favorite TV shows.

Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever!

I will think about the mothers and fathers who are searching for their
missing children, the Parents who are visiting their children's
graves instead of their bedrooms, and parents who are in
hospital rooms watching their children suffer senselessly, while screaming inside, that they can't take it anymore.

And when I kiss you good night I will hold you a little tighter, a little
longer and I will smell you.  It is then, that I will thank God for you, and ask him for nothing more, except one more day............. with you.

 

I love you Sydney!

Copyright 1996.  Sally Meyer  (For Dhylan) 
 

 


Who are Tiger Parents?

T
hey are those parents who’ve had less than 12 happy months with their newly born child.

They are those parents who’ve witnessed the horror and desperation that a prolonged seizure can bring.

They are the parents who’ve spent endless hours in hospital corridors outside ERs and ICUs praying and
cursing at the same time, being desperate and hopeful at the same time.

They are the parents who try to understand the complexities of epileptic syndromes unknown to
even the best doctors.

They are the parents who are willing to try anything for a “seizureless” day, a “seizureless” hour,
a “seizureless” moment or a “seizureless” smile.

They are the parents whose children are called “poor thing”, “what a pity”, “its too bad”, and are told,
“I’m so sorry”, “I sympathize with you.”

They are the parents who’ve turned their lives into their children’s lost lives.

They are the parents who’ve turned their children’s lost lives into their own lives.

They are the parents who are always tired and nerve-wrecked, but who are never allowed to be tired or
nerve-wrecked.

They are the parents who can make time even for “yesterday.”

They are the parents who can stand up to everything as if they came up against nothing.

They are the parents whose working hours never end.

They are the parents who feel touched by God when their child lives yet another day.

They are the parents who feel touched by God when their child passes away.

They are the parents whose families are filled with fear and denial.

They are the parents whose parents don’t know how to help.

They are the parents whose husbands are barely there.

They are the parents whose wives are barely there.

Yet,

They are the parents who are ALWAYS THERE!!!

They are….The TIGEPARENTS.

Pad, a Tiger Dad from Greece                                                                                    


Written by Pantelis Panopoulos, Father of a Child with Dravet Syndrome.


THE BEATITUDES-For Friends of Exceptional Children


Blessed are you who take time to listen to difficult speech:

For you help us to know that if we persevere,

We can be understood.

Blessed are you who walk with us in public places,

And ignore the stares of strangers,

For in your companionship,

We find havens of peace.

Blessed are you who never bid us to "hurry up",

And more blessed are you

Who do not snatch tasks from our hands to do them for us,

For often we need time rather than help.

Blessed are you who stand beside us

As we enter new and untried ventures,

For our failures will be outweighed

By the times we surprise ourselves and you.

Blessed are you who ask for our help,

For our greatest need is to be needed.

Blessed are you when you assure us,

That the one thing that makes us individuals

Is not in our peculiar muscles,

Nor in our wounded nervous systems,

Nor in our difficulties in learning,

Nor any exterior difference.

But is in our inner, personal, individual self

Which no infirmity can diminish or erase.
 
Author Unknown


Where are the Parents??

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.  They are burried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

 

Where are the parents?

 

They are at home, diapering their 15 year old son or trying to lift their 100 lb daughter onto the toilet.

They are spending an hour at each meal to feed a child who can not chew, or laboriously and carefully feeding their child through a g-tube.  They are administering medications. They are changing catheters and switching oxygen tanks.

 

Where are the parents?

 

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through? They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

 

Where are the parents?

 

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, less he do himself, or another member of the family, harm.  They are sitting at home with their child because family members and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

 

Where are the parents?

 

They are trying to spend time with their non-disabled children,, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.  They are struggling to keep a marriage together, because adversity does not always bring you closer.  They are working 2 and sometimes 3 jobs in order to keep up with extra expenses, And sometimes they are a single parent struggling to do it all by themselves.

 

Where are the parents?

 

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.  They are trying to patch their broken dreams together so they might have some sort of a normal life for their children and their families. 

 

They are busy trying to survive.

 

 By - Sue Stuyvesant 10/15/96

Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sadie and her new bike.

WELCOME TO HOLLAND

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.

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

 

Thanks for your help!