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Inspiration

 


Being the parents of special needs children can be challenging, overwhelming, saddening and frustrating.  In the times of trial we can benefit from written words of encouragement.  Credit is given to the author if at all possible.

 

MY CHILD’S HAND

By Annette Brennan

 

My child’s hand stays tightly closed

to hide a secret this . . .

The treasure that she holds so close,

a precious angel’s kiss.

She holds on very tightly

so the feeling won’t slip away.

Of the goodbye kiss

the angel gave

as she sent her to me that day.

Once in a while

she opens her hand

and takes a peek inside.

At the secret place

the world can’t see

where her precious treasure hides.

And so,

I will forgive you,

for you know not what you see.

When you look at my child’s

little fisted hand.

That holds a precious secret,

between,

an angel, my child and me.

 

 

“CARISSA"
By Carissa’s Aunt


I wonder if you can see
That I'm not black or white-- I'm me!!
I've hands and feet and hair and skin,
But they just hold this big heart in.

We each have a different face,
A life, a home, a place, a name.
And so we all are different,
And yet, we're all the same.

I know the world will someday see
All the things I dream I'll be.
Just like a present, wrapped and tied,
What matters most is what's inside!
is what's inside

 

When you thought I wasn't looking.
(Written by a former child)

A message every adult should read, because children
are watching you and doing as you do, not as you say.
When you thought I wasn't looking, I saw you hang my
first painting on the refrigerator, and I immediately
wanted to paint another one.

When you thought I wasn't looking I saw you feed a
stray cat, and I learned that it was good to be kind to animals.

When you thought I wasn't looking, I saw you make my
favorite cake for me and I learned that the little things
can be the special things in life.

When you thought I wasn't looking I heard you say a
prayer, and I knew there is a God I could always talk to
and I learned to trust in God.

When you thought I wasn't looking, I saw you make a
meal and take it to a friend who was sick, and I learned
that we all have to help take care of each other.

When you thought I wasn't looking, I saw you give of
your time and money to help people who had nothing and
I learned that those who have something should give to
those who don't.

When you thought I wasn't looking, I saw you take care
of our house and everyone in it and I learned we have
to take care of what we are given.

When you thought I wasn't looking, I saw how you
handled your responsibilities, even when you didn't
feel good and I learned that I would have to be
responsible when I grow up.

When you thought I wasn't looking, I saw tears come
from your eyes and I learned that sometimes things
hurt, but it's all right to cry.

When you thought I wasn't looking, I saw that you
cared and I wanted to be everything that I could be.

When you thought I wasn't looking, I learned most of
life's lessons that I need to know to be a good and
productive person when I grow up.

When you thought I wasn't looking, I looked at you and
wanted to say, "Thanks for all the things I saw when
you thought I wasn't looking."

 

The ABC's of Faith.....
Author Unknown


Although things are not perfect
Because of trial or pain
Continue in thanksgiving
Do not begin to blame
Even when the times are hard
Fierce winds are bound to blow
God is forever able
Hold on to what you know
Imagine life without His love
Joy would cease to be
Keep thanking Him for all the things
Love imparts to thee
Move out of "Camp Complaining"
No weapon that is known
On earth can yield the power
Praise can do alone
Quit looking at the future
Redeem the time at hand
Start every day with worship
To "thank" is a command
Until we see Him coming
Victorious in the sky
We'll run the race with gratitude
Xalting God most high
Yes, there'll be good times and yes some will be bad, but  
Zion waits in glory...where none are ever sad!
 

Somebody Said
Author Unknown

Somebody said a mother is an unskilled laborer
Somebody never gave a squirmy infant a bath.
Somebody said it takes about six weeks to get back
to normal after you've had a baby .
Somebody doesn't know that once you're a mother, normal is history.
Somebody said a mother's job consists of wiping noses and changing diapers
Somebody doesn't know that a child is much more than
the shell he lives in.
Somebody said you learn how to be a mother by instinct .
Somebody never took a three-year-old shopping.
Somebody said being a mother is boring .
Somebody never rode in a car driven by a teenager   with a driver's permit.
Somebody said teachers, psychologists and   pediatricians know more about
children than their mothers .
Somebody hasn't invested her heart in another human being.
Somebody said if you're a "good" mother, your child
will "turn out" .
Somebody thinks a child is like a bag of plaster of Paris that comes with
directions, a mold and a guarantee.
Somebody said being a mother is what you do in your
spare time .
Somebody doesn't know that when you're a mother,
you're a mother ALL the time.
Somebody said "good" mothers never raise their voices .
Somebody never came out the back door just in time to see her child wind up
and hit a golf ball through the neighbor's kitchen window.
Somebody said you don't need an education to be a
mother .
Somebody never helped a fourth grader with his math.
Somebody said you can't love the sixth child as much
as you love the first .
Somebody doesn't have six children.
Somebody said a mother can find all the answers to   her child-rearing
questions in the books .
Somebody never had a child stuff beans up his
nose.
Somebody said the hardest part of being a mother is
labor and delivery .
Somebody never watched her "baby" get on the bus
for the first day of kindergarten.
Somebody said a mother can do her job with her eyes
closed and one hand tied behind her back .
Somebody never organized seven giggling Brownies to
sell cookies.
Somebody said a mother can stop worrying after her
child gets married .
Somebody doesn't know that marriage adds a new son or daughter-in-law to a
mother's heartstrings.
Somebody said a mother's job is done when her last
child leaves home .
Somebody never had grandchildren.
Somebody said being a mother is a side dish on the
plate of life .
Somebody doesn't know what fills you up.
Somebody said your mother knows you love her, so you
don't need to tell her .
     Somebody isn't a mother.
 

"Like Me"
Emily Perl Kingsley

I went to my dad and said to him,
There's a new kid who's come to my school.
He's different from me and he isn't too cool.
No, he's nothing at all like me, like me,
No, he's nothing at all like me.

He runs in a funnyish jerkyish way
And he never comes first in a race
Sometimes he forgets which way is first base,
And he's nothing at all like me, like me,
No, he's nothing at all like me.

He studies all day in a separate class
And they say that it's called "Special Ed."
And sometimes I don't understand what he's said,
And he's nothing at all like me, like me,
No, he's nothing at all like me.

His face looks kind of different from mine,
And his talking is sometimes so slow
And it makes me feel funny and there's one thing I know;
He is nothing at all like me, like me,
No, he's nothing at all like me!

And my father said, "Son, I want you to think
When you meet some one different and new
That he may seem a little bit strange, it's true,
But he's not very different from you, from you,
No, he's not very different from you,"

Well I guess, I admitted, I've looked at his face;
When he's left out of games, he feels bad.
And when other kids tease him, I can see he's so sad.
I guess that's not so different from me, from me,
No, that's not very different from me.

And when we're in Music, he sure loves to sing,
And he sings just like me, right out loud.
When he gets his report card, I can tell he feels proud,
And that's not very different from me, from me,
No, that's not very different from me.

And I know in the lunchroom he has lots of fun;
He loves hot dogs and ice cream and fries.
And he hates to eat spinach and that's not a surprise,
'Cause that's not very different from me, from me,
No, that's not very different from me.

And he's always so friendly, he always says hi,
And he waves and he calls out my name.
And he'd like to be friends and get into a game,
Which is not very different from me, from me,
No, I guess that's not different from me.

And his folks really love him. I saw them at school,
I remember on Open School Night --
They were smiling and proud and they hugged him real tight,
And that's not very different from me, from me,
No, that's not very different from me.

So I said to my dad, Hey, you know that new kid?
well, I've really been thinking a lot.
Some things are different . . . and some things are not . . .
But mostly he's really like me, like me,
Yes, my new friend's . . . a lot . . . like me.
 

As I Watch You Sleeping
Written by: Sheryl Trowbridge

As I watch you sleeping,
my problems seem so small.
The rewards you have to offer me,
are so big and so tall.

As I watch you sleeping,
I realize just how great your accomplishments are.
I know how much you struggle
to have made it this far.

As I watch you sleeping,
I can't imagine how my life would be without you.
Even through the hard times
I'd be lost without you.

As I watch you sleeping,
I see just how much you have brought into my life.
All the joys and happiness,
all the wonder and excitement.

As I watch you sleeping,
I am overcome with such love.
Your sweetness and happiness,
are something I can't get enough of.

As I watch you sleeping,
I think just how lucky I am.
To be the mother of such
a beautiful little boy.

As I watch you sleeping,
all of my worries seem to melt away.
I know that no matter what happens,
together we can make it through another day.

 

What you should know about my child.
Author Unknown

Remember that he is, first of all, my child.
Let me see him smiling in his sleep and let me think about how handsome he is
and not about how delayed that smile was in coming.
Help me not lose sight of my son in the shadow of his limitations
I know that you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is
and in following through at home with things that are important.
Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of having a vacation, sometimes physically,
sometimes just emotionally, for a day, a week, a month, without your judging me.
I will be there for him when you are long gone.
I love my child with an intensity that you can only imagine.
If on a given day I am tired or cross with him, listen to me,
lighten my burden, but do not judge me.
Celebrate with me, rejoice in who he is and who he will become
but forgive me if from time to time I shed a tear for who he might have been.

 

I am the Child
Author Unknown

I am the child who cannot talk.  You often pity me, I see it in your eyes.  You wonder how much I am aware of... I see that as well.  I am aware of much... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.  I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.  You cannot conceive my isolation, so complete it is at times.  I do not gift you with clever conversation, cute remarks to be laughed over and repeated.  I do not give you answers to your everyday questions, responses over my well-being, sharing my needs or comments abut the world around me.  I do not give you rewards as defined by the world’s standards... great strides in development that you can credit yourself; I do not give you understanding as you know it.  What I give you is so much more valuable... I give you instead opportunities.  Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.  I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.  I am the child who cannot talk.

I am the child who cannot walk.  The world sometimes seems to pass me by.  You see the longing in my eyes to get out of this chair, to run and play like other children.  There is much you take for granted.  I want the toys on the shelf, I need to go to the bathroom, oh, I’ve dropped my fork again.  I am dependent on you in these ways.  My gift to you is to make you aware of your great fortune, your healthy back and legs, your ability to do for yourself.  Sometimes people appear not to notice me; I always notice them.  I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.  I give you awareness.  I am the child who cannot walk.

I am the child who is mentally impaired.  I don’t learn easily, if you judge me by the world’s measuring stick.  What I do know is infinite joy in the simple things.  I am not burdened as you are with the conflicts of a more complicated life.  My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.  I give you the gift of simplicity.  I am the child who is mentally impaired.

I am the disabled child.  I am your teacher.  If you allow me, I will teach you what is really important in life.  I will give you and teach you unconditional love.  I gift you with my innocent trust, my dependency upon you.  I teach you of respect for others and their uniqueness.  I teach you about the sanctity of life.  I teach you about how very precious this life is and about not taking things for granted.  I teach you about forgetting your own needs and desires and dreams.  I teach you giving.  Most of all, I teach you hope and faith.  I am the disabled child.

 

Liam's Journey
Sally Meyer

In the shade of the trees by the banks of a lake, Liam was born. He started his life in a nest along with six other eggs. Liam was the first to hatch, and he pecked away furiously at the shell, until he managed to squeeze out into the sunlight.  His mother stood admiring her new son, and waited patiently for his siblings to hatch.  It took a little while but eventually there were seven little ducklings standing on the lakeshore.  "Oh my goodness" the mother duck exclaimed, "What a wonderful family I have". She looked over her babies with pride, and gathered them about her.

As time went by, the mother duck taught her babies to swim, and they followed behind her on the crystal waters. They stayed in a straight line behind their mother, if she went to the left, they followed, when she stopped to admire the beauty of their world, or to dip
her head beneath the water to catch a tasty grub, they swam beside  her in a circle, hoping to be the one to share her tasty treat.

Liam always liked to be the last in line, he seemed to enjoy watching the other ducklings, as they stayed in formation. When one of them got out of line, he quacked furiously, and cried great big ducky tears.  The mother duck watched Liam, she noticed that he was different from her other babies. He looked just exactly like the rest, with his sweet little beak, and his snowy feathers, but there was something about Liam that worried her. She stayed up at night, in the shade of the willow tree, and pondered about her little son, and what could be wrong.  Who was this little duckling, and why did he act so strangely?

As time went on, Liam didn't quack anymore, he refused to swim in the lake, he didn't like the way the water felt when he put his head beneath the surface to hunt for food. 
He liked to stand on the shore looking out into the blue water, tapping his little webbed feet over and over. Some days he walked along the shore and played alone in the rushes. Other days he spent his time sitting quietly, arranging the pebbles in long lines.  His mother was worried about him, he did not like to eat the green shoots that the other children loved. He only ate one particular grub, which were hard for his mother to find.

The other children avoided Liam, he always wandered off and got lost. Mother always sent Lucy and Leroy to look for him, and they got tired of wasting their days searching for him. Lila and Lester wanted to play with the other ducks, but had to baby-sit Liam, even though he was really the oldest one, because he had hatched first.  But somehow Liam didn't understand danger, and he had to be watched constantly for fear he would get into trouble. "We are tired of taking care of Liam," they wailed. "We want to go play with our friends across the lake, why do we have to stay and watch him all the time?"

Liam's mother wanted to spend the evenings with her friends, for they would gather together in the middle of the lake discussing the latest gossip. She missed these moments, but she had to stay close to Liam during the long night hours. Liam had a hard time going to sleep, and sometimes if he woke during the night he wandered off into the darkness. Papa Duck often stayed up late with her, talking about their son, and what they were going to do about him.  They missed the old days when they could visit with friends while the children slept.  All night long they stayed close to Liam, sometimes he would let Mama put her wing around him, and she told him stories about the lake, and about the world and how wonderful it was. Other nights, Papa told him stories about when he was a little duckling. Liam did not speak, but they knew that he was listening, Mama stroked his downy head and wept for the little white duckling, who sat so still beside her.  "Why is he so different?" she wondered, "Why did I have such a child?".  When Liam fell asleep, she tucked him in with all the other children, and lay beside Papa, but sleep did not come easily for the parents of Liam.

Liam didn't notice that he was causing any problems. He was happy, he smiled at the flecks of dust that made rainbows in the sunlight. When the other children teased him he didn't seem to care, he created his own happiness, smiling at them cheerfully. Life for Liam was always the same, and he liked it that way. Each day he woke and ate two grubs that his mother had found for him. Then he liked to go to the shore and watch the sun rise. It was wonderful to him, that every day when he came to the edge of the water, the large sun rose slowly and higher into the sky. It made him feel good that he could depend on this every day.

One day Liam woke up early, went outside and to watch the sun rise. As he walked to the shore he felt something he had never felt before, a cold breeze ruffled his feathers and made him shiver. As he stood waiting for the sun to rise, he tapped his foot impatiently, for the sun could not be seen on the horizon. Liam waited for a long time, he became anxious. Where was the sun? Every day of his life he had watched it rise, and that was how he started his day.  After a minute or two, a large cloud loomed overhead and the wind blew colder. Liam's feathers became chilly, he stood shivering, and then began to cry. Liam decided that if the sun would not rise, maybe it was lost. He decided to venture out to find the sun, that would make everything okay again. He started waddling along the shoreline determined to catch the sun and tell it to rise.

When the Mama and Papa duck and the other children woke a few minutes later, they noticed that Liam was missing. Lester and Larry hurried to the shoreline to see if he was there, but they ran home to tell mother that Liam was nowhere to be found.  Mama duck's heart began to flutter and she quickly went out herself to check the shore.  No one was there, no little white duckling waiting for the sun to rise. Liam was gone leaving a trail of footprints going eastward.  Mother Duck panicked for a moment, she knew that Liam did not know his way around the lake, he had stayed close to home, preferring to sit quietly and play. Where could her little son be?

The other ducks on the lake gathered together, and formed a search party, to try and find Liam. Some flew overhead, trying to spot the him, others searched the rushes and soggy marshes near the lake. Papa duck joined the others, while Mama duck stayed home with her children, they huddled around her sadly, hoping for good news.  As the day wore on and Liam had not been found, the children began to cry.  We miss Liam" they cried, "We should have been nicer to him".  As night fell the children finally went to sleep, their little bodies huddled close together.

But Mother Duck could not sleep, she stood on the shoreline, quacking plaintively, calling for Liam. She thought back to the times when they sat together in the evening, and her wings ached to hold her little son. "He was not a burden, " she thought, "he was a blessing" She no longer wanted to be with the other mothers, chatting about this and that. All she wanted was to have Liam next to her, as they always did. She realized how much she loved him, and how special he was to their family.

She laughed when she remembered how he loved to have his neck tickled, right in that certain spot. She cried when she realized that she had often wished he were just like the others, so that she could have her freedom. She sat on the edge of the water, during the long long night. But Liam did not return. 

The next day as the ducklings woke up, the waddled to find their mother, and found her sitting sadly on the rocky beach. They gathered beside her, and she tucked them under her wings.  Lucy and Lilly began to sob quietly, "We miss Liam" they cried, "we miss the way he smiles at us when we give him a new pebble for his collection".  ester and Larry joined in, "Oh yes, and the other day when we took him to the water, he put his foot in for the first time in ages! and he even gave a tiny quack".  Leroy and Lila continued, "We have to find him, our family is not the same without Liam"

Mother Duck smiled at her children, and for the first time the worry and sadness left, they were a family and one of them was missing. It was time to take action.  They walked along the shore, each one quacking loudly, calling for Liam. Usually he ignored the calls but it made them feel good to be doing something, so they continued their journey. At lunch time, they ventured into the water to eat and gather some of Liam's favorite grubs, he must be awfully hungry by now, for his mother always found his food for him. He would never be brave enough to go into the water to find his own.

Late in the afternoon, the little family began to falter worrying that they would never find Liam. They had searched high and low and had been unsuccessful.  Lucy had swollen feet, and wanted to turn back, and Mother decided that if they didn't find him in one more hour, they must turn back.  At that moment, the sun came out from behind a large cloud, and shined down on the little group. It was a welcome warmth, for the air had been chilly for most of the day.  As the children sat resting in the sunshine, a small figure walked out of the dense rushes, and waddled to the shoreline. It was Liam!

He stood there flapping his wings joyfully, greeting his beloved sunshine that had been
hidden behind the clouds of fall.  All of his brothers and sisters quacked loudly, and hurried over to him. Mother duck stood back for a moment, enjoying the wondrous sight of the seven little ducks, dancing in the sunlight. Then she too, rushed towards Liam and wrapped her wings around him, joyfully.  Liam seemed surprised to see his family, and smiled shyly at all the fuss that was being made of him. Mother duck gave him the grubs she had collected for him, and he ate them greedily, which was a change for Liam. He usually only ate two grubs three times a day.

The little family of ducks hurried homeward, and saw Papa coming towards them. His face was sad and tired, but when he saw Liam, he rushed to him and gathered him close. The children had never seen Papa cry before, and Liam looked up into his Papa's face and for the first time, reached to brush a tear away.  The happy family sat together in the moonlight. Liam was carefully tucked in between them all.

 Together at last, together forever. 

 

If I could only tell you who I am.
Dan Huber, MS 

The impulses come and go. Some days are good for me, some are not. Many messages come my way. “I love you very much...If you could only stop that constant demanding!” “I love you very much...if only you could slow down!” But who are you speaking for? Is it truly for me, your beloved child? Or is it for you, to release the pain, inconvenience, and hard work I cause you? I try so hard to be good, to be helpful, to find some way to get your love and acceptance. Most things I try do not work. I know I can trouble you. I know I wear you down. I know I embarrass you in front of your friends, our neighbors, wherever we go. I know I am different. But you forgot that I’m a child, who speaks only with the tools of a child. My tools are my behaviors.  I know no other way to tell you who I am. 

I want very much to please you and to love you, to earn your praise and gentle affection. But, I trip over my own feet trying to love you.  I often do things without thinking first. I know I am hard for you to raise, but, besides you, I am all I have. I do not understand your words, though you may think I do. Words confuse me. Speak to me from you heart, not your head. You yell at me, because nothing else seems to work. Please forgive me for making you do this, as I forgive you for doing this to me. All I am really trying to do, in my own clumsy, childish way, is get you to love me, in spite of my behavior. I also want very much to learn how to love you.  So, the next time I act before I think, or the next time you feel like raising your voice in anger and frustration, please understand that I am scared, lonely, frustrated, and angry at what I have created and live with inside of me. Please see through my behavior to my heart. This will make it easier for me to see yours, too, for I always follow your example. 

Be gentle and kind, yet firm in your love for me. It’s hard for me to trust my lovability. I want you to help me see through to the light of your love, so I can discover the truly lovable person I am.  Do you now know who I am? I am a difficult child, perhaps the difficult child in all of us. I am the family’s troublesome youngster. I am trying to teach you to let go and expand the boundaries you have set around loving yourself and others.  As a child, I try to teach you this through my behavior. As part of your inner self, I teach you to love that which you do not approve of in yourself. In relationships, I teach your through conflict to forget our differences and remember our hearts. You can do this through times of unconditional love: walks in the park, an unexpected hug, time spent playing together, or a few quiet moments with me before bedtime. These things open my heart, and convince me you love me even when I try to be unlovable for reasons I don’t understand.  

WE ARE HERE TO TEACH EACH OTHER. Let’s work together, then, to become the loving, majestic, innocent, and forgiving children of beauty that exist within us, expressing the highest qualities in us all.

To You, My Sisters
Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasounds.  We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.  Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children ungergo chemotherapy.  Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing.  Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.  We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Welcome to Holland
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a
disability- to try to help people who have not shared this 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 guidebooks and make your wonderful
plans.  The Coliseum, Michelangelo's David, the gondolas of 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 guidebooks.  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 that 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 going to and 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, 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.

The Special Mother
Erma Bombeck

Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did
you ever wonder how mothers of handicapped children 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 make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew. Forrest, Marjorie, daughter,
patron saint, Cecilia"

"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 to a mother who does
not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wears off, she'll handle
it."

"I watched her today. She has that felling of self and independence that is so
rare and so necessary in a mother. You see, the child I'm going to give her has
his own world. She has to make him 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'll
never survive. Yes, here is a woman whom I will bless with a child less than
perfect. She doesn't realize 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 present at a
miracle, and know it!" When she describes a tree or a sunset to her blind
child, she will see it as few people ever see my creations."

"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 mid-air.

God smiles, "A mirror will suffice."
 

 

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