New Diagnosis

You recently received the news...
a diagnosis or
an abnormal test result.
Maybe you heard these phrases:
"developmental delay," "special needs,"
or "terminal illness,"
in reference to YOUR child.
(Even though you thought that type of thing only happened to other people.)

It is likely that you have feelings of 
shock, devastation, isolation, 
and more questions than answers.

We truly do understand your pain and confusion.
This page is a compilation of resources
*especially for*you*in this moment* 
We hope that here you may find some sense of
comfort, encouragement and belonging.


~~~



Welcome to Holland
by Emily Perl Kinglsey

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 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...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 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.


~~~



Poems

For Momz
Author Unknown

"When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't always good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth."



The Special Child
Author Unknown

You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”



Heaven's Very Special Child
~Edna Massimilla

A meeting was held quite far from Earth
"It's time again for another birth,"
Said the angels to the Lord above,
"This special child will need much love."
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From the folks he meets way down there.
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped.
So let's be careful where he's sent
We want his life to be content
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play
But with this child sent from above
Come stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from heaven
Their precious charge, so meek and mild,
Is heaven's very special child.



Why Compare?
~Author Unknown

A child is like a butterfly in the wind
Some can fly higher than others,
But each one flies the best it can.
Why compare one against the other?
Each one is different.
Each one is special.
Each one is beautiful.



Worth While
by Ella Wheeler Wilcox

It is easy enough to be pleasant,
When life flows by like a song,
But the man worth while is one who will smile,
When everything goes dead wrong.

For the test of the heart is trouble,
And it always comes with the years,
And the smile that is worth the praises of earth
Is the smile that shines through tears.



Quotes

"Motherhood is about raising-and celebrating-the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."
 ~The Water Giver


"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family." ~Author Unknown




There's only us, there's only this. Forget regret, or life is yours to miss. No other road, no other way, no day but today. ~Jonathan Larson

“There will come a time when you believe everything is finished. That will be the beginning.” Louis L'amour
 


"Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved."~Helen Keller

"When life gives you a hundred reasons to cry,
show life that you have a thousand reasons to smile."
~Unknown



"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." -Albert Einstein

"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." ~Bill Cosby

 

"In all of living have much of fun and laughter. Life is to be enjoyed, not endured."
~Gordon B. Hinckley



Songs


She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
As they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me





I don't mind your odd behavior
It's the very thing I love
If you were an ice cream flavor
You would be my favorite one

My imagination sees you
Like a painting by Van Gogh
Starry nights and bright sunflowers
Follow you where you may go

Oh, I've loved you from the start
In every single way
And more each passing day
You are brighter than the stars
Believe me when I say
It's not about your scars
It's all about your heart

You're a butterfly held captive
Small and safe in your cocoon
Go on you can take your time
Time is said to heal all wounds

Like a lock without a key
Like a mystery without a clue
There is no me if I cannot have you





When I see your face
There's not a thing that I would change
Cause you're amazing
Just the way you are
And when you smile,
The whole world stops and stares for awhile
Cause girl you're amazing
Just the way you are.

"I hope this song will mean as much to you as it does to me and my family.
If you have anybody in your life that's special, make sure you tell 'em." ~MattyB




Sacred Thoughts

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. ~2 Corinthians 12:9

I would appeal to God: I would lay my cause before Him. He performs wonders that cannot be fathomed, miracles that cannot be counted. ~Job 5:8-9

“Weeping may endure for a night, but joy cometh in the morning.” ~Psalm 30:5

“In the world ye shall have tribulation: but be of good cheer; I have overcome the world." ~John 16:33

Be joyful in hope, patient in trouble, and persistent in prayer. ~Romans 12:12

For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory. ~2 Corinthians 4:17



I Asked God
Author Unknown

I asked God to take away my pain.
God said, No.
It is not for me to take away,
but for you to give it up.

I asked God to make my handicapped child whole.
God said, No.
Her spirit is whole,
her body was only temporary.

I asked God to grant me patience.
God said, No.
Patience is a by-product of tribulations;
it isn't granted, it is earned.

I asked God to give me happiness.
God said, No.
I give you blessings;
Happiness is up to you.

I asked God to spare me pain.
God said, No.
Suffering draws you apart from worldly cares
and brings you closer to me.

I asked God to make my spirit grow.
God said, No.
You must grow on your own,
but I will prune you to make you fruitful.

I asked for all things that I might enjoy life.
God said, No.
I will give you life so that
you may enjoy all things.

I asked God to help me LOVE others,
as much as he loves me.
God said... Ahhhh,
finally you have the idea.
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