Haley Is My Hero
"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."
~ Christopher Reeves
Below are words that have captured my thoughts as I have traveled this journey with Haley...
Who Are Tiger Parents??
They 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 TIGER PARENTS.
Pad, a dad from Greece
Written by Pantelis Panopoulos, Father of a Child with Dravet Syndrome.
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
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
And God Said "No"
I asked God to take away my pride.
And God said "No".
He said it was not for him to take away,
but for me to give it up.
I asked God to make my handicapped child whole.
And God said "No".
He said his spirit was whole,
his body was only temporary.
I asked God to grant me patience.
And God said "No".
He said patience is a by-product of tribulations.
It isn't granted, it is earned.
I asked God to give me happiness.
And God said "No".
He said he gives me blessings, happiness is up to me.
I asked God to spare me pain.
And God said "No".
He said suffering draws you apart
from worldly cares and brings you closer to me.
I asked God to make my spirit grow.
And God said "No".
He said I must grow on my own.
But he will prune me to make me fruitful.
I asked for all things that I might enjoy life.
And God said "No".
He said I will give you life, that you may enjoy all things.
I asked God to help me LOVE others,
as much as he loves me.
And God said,
Ah, finally you have the idea.
~ Claudia Weisz ~
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 affirmity can diminish or erase.
Author Unknown
"I can do all things through Christ who strengthens me" Phillipians 4:13