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 the Club
by Jess at Diary of a Mom

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear.... I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you.... I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.



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.

((Here is a printable version of this very popular essay)):




Grief
by Heather Schichtel
Retrieved from Hopeful Parents

I sit on the park bench eating cheesy popcorn and watching young children on the playground. I am enjoying the day, the sun on my face, and the smell of fresh grass.

Randomly I think, I wish Samantha could run and play with these kiddos.

And there it is, the cold hand in my cheesy popcorn; the presence taking up too much space on the park bench, blocking my sunshine. My Grief….

“Really?” I say. “I didn’t invite you. Get your hand out of my cheesy corn.” Instead, I end up having to scoot over, making more room for my Grief.

Grief comes and goes when I least expect it. I’ll be in my car, driving along listening to music and I’ll catch it in the corner of my eye, kicking the back of my seat.

“Hey Heather.”

“Aww crap, what are you doing here?”

“It’s been a while. I thought I would stop in for a visit.”

“Well, make sure you fasten your seatbelt and be quiet. Samantha’s sleeping and I don’t want you to wake her up.”

“Can I change the station?”

“No.”

“Can I play with the window?”

“No, you can just come along for the ride.”

So we go on the ride together; fingernails thumping on the dashboard as a reminder of who decided to show up today. Yes, I am quite aware of your presence, you don’t need to remind me.

Grief’s appearance used to rattle me, send me into the bathroom, crying hysterically. Render me worthless for a day. Sometimes it still does but as Grief has been established as a consistent visitor in our household, we have drawn up a contract. We have an agreement.

As the mom of Samantha, a child who does not walk or talk, a child who is suffering from a mitochondrial disease, I will grieve. I will grieve for many dreams that will not come to fruition. I will grieve for a life I thought would be different.

I will grieve at times. And I will not grieve at times. I will laugh at times. I will not laugh at times.

Grief can come into our house but is not allowed to stay. If allowed to stay, it would devour the corners of our house. It would suck up the oxygen in the room. It would consume me.

And that is not acceptable.

Grief tends to run within the Special Needs community. I bump into him quite often.

How are you?

My daughter had pneumonia. She is in the hospital on a ventilator.

I look around and see Grief, sitting on the couch, smugly picking at dirty fingernails.

And I meet those who sadly keep very, very close company with this unwanted guest. Grief hangs over them like a shroud. It is hard to laugh. It is hard to love. Because in copious amounts Grief tends to ooze; like a nasty septic wound…draining life from us.

But we still have to laugh, we still have to play, we still have to live….life carries on…

….and on

....and on….

I cannot, at the end of my life say….well, it was long, hard and I was sad.

Surprisingly, our relationship is not based entirely on conflict. My interactions with Grief have allowed me to see myself entirely raw, unprotected, and exposed. At times I feel that I have lost my skin…..yes, here I am. Be careful, that’s my beating heart you see there. Oh no, no, do not touch.

I am no longer afraid to approach others regarding their own tragedies. I bring up the tough conversations. How is your mother? I am sorry for your loss. I am so sorry your daughter is in the hospital. I hug, I cry, I listen. Not because I am an uber-sensitive but because I know Grief sometimes travels alone except when he travels with his favorites… Isolation and Loneliness.

Sometimes Grief shows up at a party…..drinks my wine, eats my last bite of fudgy dessert. It’s an annoyance really but since Grief is not a constant life guest, I have learned to tolerate the time we spend together. Sometimes we even enjoy an introspective moment or two.

We have set the rules and sometimes they are followed. We cannot have a permanent impy, uninvited, grievous house guest...we don't have the room...not in our lives, not in my heart...life is too short and despite the bad things that can happen... life is too sweet.

25 Things That Make SN Parenting Easier
A Word to New Moms
Some Mothers Get Babies With Something More
The Special Mother
To You, My Sisters 
Wait and See
When You See My Baby 


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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