Poems and Letters

Song:

The music you hear playing in the background became a hit and one of my favorites after Logan's birth. It always makes me cry. Here is the main chorus:

Don't Laugh at Me

by country music artist Mark Wills

Don't laugh at me, don't call me names.

Don't get your pleasure from my pain.

In God's eyes we're all the same.

Someday we'll all have perfect wings.

Don't laugh at me.

Thank you Keith for composing this piece and sending it to me.

Scripture:

Psalms 139:13-16

For You formed my inward parts;
You covered me in my mother's womb.
I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul know very well.
My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.

Poems:

This poem was written by my great aunt in November 13, 1999. She presented a program on Down syndrome to her retired teachers club. She did a wonderful job and I will cherish the poem forever.

 
I know a special little boy,
Logan is his name.
He was born with all his body parts,
But some were not the same.
 
There was something about chromosomes,
Whatever they may be!
Instead of having forty-six,
He has an extra one, you see.
 
You'd think that such a tiny thread
Could never cause much trouble,
But it can and may upset many things--
Some problems are even doubled.
 
When he was very, very small,
He had defects in his heart.
Now they are "healed perfectly,"
So now more problems with that part.
 
He learned to walk at fifteen months.
Right on time for a child with D.S.
But, he didn't master crawling first.
To the questioning concern of others-yes.
 
His mother is a very talented girl,
My niece once removed, Logan removed by two.
I have learned to love little Logan,
If you knew him, you would, too.
 
Logan had made wonderful strides.
Doctors and nurses have helped him so.
But even with loving parents and siblings,
Progress may be slow.
 
So today I tell his story to you,
My retired teacher friends.
The more who know and pray for him,
The better he will grow and mend.

This poem was sent to us by a very compassionate neighbor, Juanita Grotjan, upon our arrival home from the hospital.

Heaven's Very Special Child

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 progess may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thought may seem quite far away,
In many ways he won't adapt,
And he'll be know 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
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

I found this poem on the "Down Syndrome: For New Parents" website. It touched me deeply and I have passed it on to many others since then. I'd like to share it with you.

Creed of Babies With Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Letter:

While still at the hospital, Jody and I received this moving letter from someone with the wisdom to put things in perspective and say just the right words.

6/1/98

Hello Jody and Phyllis,

I was deeply moved by the call from Jody last Friday night. I spent most of the night reflecting and praying for you all and your new baby. Not knowing all of the details of the situation, I prayed mostly for an understanding of why some things happen the way they do and why some things are not always perfect in the way that they first appear. It was then that I realized that there are occasions where perfection is placed before us and we are unable to recognize it because we become so accustomed to imperfection that it appears so different to us.

I once saw a quote that read, "God's most beautiful thought bloom into children" and I believe that is true. In most cases the beauty that we once knew as children becomes somewhat tarnished as we learn of the tragic imperfections of the human race. However, there are some children that are born perfect and lack the ability to understand the tragedy of the human race and are forever with out sin. In some ways the imperfect society looks upon these children as weak, but to those who have experienced such a child, they are called "Special."

My wife, Eileen, had a "special" cousin and we all believe that when his duties were fulfilled on earth he was welcomed into heaven with open arms. You see, he never faced the world with out a smile and a glee filled glint in his eyes. He never knew sin.

At this writing I am uncertain of the status of you new baby. Yet, I am inspiered to write of the blessings that will take place in all of your children and your family. The opportunity may exist to learn of the strengths of a special child and of learn how to defend that special gift when the ignorant may judge the child weak.

In closing, I want you to know that you and your family are in our prayers. I am sure that you know that special blessings come from above and that we have to trust in the goodness of God and lean on his love. The goodness and love of God may some times come from the people around us. I hope you will accept this rather personal letter as a reflection of God's love sent through this tragically imperfect messenger.

Sincerely,

(Dr.) Tom (Fangman)

Welcome To Holland

by

Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved.

 

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.

I DREAMED

by Amy W. Opalk

 I dreamed he'd be born beautiful and healthy.

    He was.

I dreamed he'd tell me that he loves me.

    He tells me every day.

I dreamed he'd be bright and funny.

    He is - his humor is wonderful.

I dreamed he'd ride a bike, catch a ball and wrestle with his big brother.

    He does and his brother loves it.

I dreamed he'd have big birthday parties with lots of friends and cake and presents.

    He's had six.

I dreamed he'd one day get on a bus and go to kindergarten.

    He did it yesterday - my heart full of love and my eyes full of tears.

I dreamed he'd make us proud.

    He has and he's inspired us.

Dean has Down Syndrome.

    I never dreamed that.

The Twelve Days of Christmas

On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability.

Beatitudes of theExceptional Child

Blessed are you who take time to listen to defective 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 relaxation.

Blessed are you that never bids us "hurry up" and more blessed are you that do not snatch our task 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 ventures, for our failures will be outweighed by 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 by all these things you assure us that the thing that makes us individuals, is not our peculiar muscles, nor our wounded nerves system, but is the God-given self that no infirmity can confine.

Blessed are those who realize that I am human and don't expect me to be saintly just because I am disabled.

Blessed are those who pick things up with out being asked.

Blessed are those who understand that sometimes I am weak and not just lazy.

Blessed are those who forget my disability of the body and see the shape of my soul.

Blessed are those who see me as a whole person and not as a "half" and one of God's mistakes.

Blessed are those who love me just as I am without wondering what I might have been like.

WHAT YOU SHOULD KNOW ABOUT MY CHILD

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.

Author Unknown

Insights by: Mary Wilt

I cried at your birth Unable to "see" The way that you were

Just the way you "should be".

The pain in my heart Was a cold, heavy stone.

I regretted your life, And lamented my own.

Still, I held you close. Let your warmth touch my heart.

Let your love filter in.And the stone fell apart.

Through warm, healing tears I've watched as you've grown,

And the strength of your spirit Has sheltered my own.

Now I see that your Maker Intended your birth,

That He knows all His children, And gives them all worth.

And now I can "see" Your beautiful face.

And there's not a feature I'd gladly erase.

For Emily, from Mommy April, 1991

Just thought we might be able to apply this to our lives. Winning isn't about always finishing first.

In Brooklyn, New York, Chush is a school that caters to learning
disabled children. Some children remain in Chush for their entire
school career, while others can be mainstreamed into conventional schools.

At a Chush fund-raising dinner, the father of a Chush child
delivered a speech that would never be forgotten by all who attended.

After extolling the school and its dedicated staff, he cried out, "Where is the perfection in my son, Shay? Everything God does is done with perfection. But my child cannot understand things as other children do. My child cannot remember facts and figures as other children do. Where is God's perfection?

The audience was shocked by the question, pained by the father's anguish and stilled by the piercing query. "I believe," the father answered, "that when God brings a child like this into the world, the perfection that he seeks is in the way people react to this child."

He then told the following story about his son Shay: One afternoon, Shay and his father walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they will let me play?"

Shay's father knew that his son was not at all athletic and that most boys would not want him on their team. But Shay's father understood that if his son was chosen to play it would give him a comfortable sense of belonging.

Shay's father approached one of the boys in the field and asked if Shay could play. The boy looked around for guidance from his team-mates. Getting none, he took matters into his own hands and said "We are losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him up to bat in the ninth inning."

Shay's father was ecstatic as Shay smiled broadly. Shay was told to put on a glove and go out to play short center field. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three.

In the bottom of the ninth inning, Shay's team scored again and now with Two outs and the bases loaded with the potential winning run on base.

Shay was scheduled to be up. Would the team actually let. Shay bat at this juncture and give away their chance to win the game? Surprisingly, Shay was given the bat.

Everyone knew that it was all but impossible because Shay didn't even know how to hold the bat properly, let alone hit with it. However as Shay stepped up to the plate, the pitcher moved a few steps to lob the ball in softly so Shay should at least be able to make contact.

The first pitch came and Shay swung clumsily and missed. One of Shay's team-mates came up to Shay and together they held the bat and faced the pitcher waiting for the next pitch. The pitcher again took a few steps forward to toss the ball softly toward Shay. As the pitch came in, Shay and his teammate swung at the ball and together they hit a slow ground ball to the pitcher.

The pitcher picked up the soft grounder and could easily have thrown the ball to the first baseman. Shay would have been out and that would have ended the game.

Instead, the pitcher took the ball and threw it on a high arc to right field, far beyond reach of the first baseman. Everyone started yelling, "Shay, run to first. Run to first." Never in his life had Shay run to first. He scampered down the baseline, wide-eyed and startled. By the time he reached first base, the right fielder had the ball.

He could have thrown the ball to the second baseman who would tag out Shay, who was still running. But the right fielder understood what the pitcher's intentions were, so he threw the ball high and far over the third baseman's head.

Everyone yelled, "Run to second, run to second." Shay ran towards second base as the runners ahead of him deliriously circled the bases towards home.

As Shay reached second base, the opposing short stop ran to him, turned him in the direction of third base and shouted, "Run to third." As Shay rounded third, the boys from both teams ran behind him screaming, "Shay run home." Shay ran home, stepped on home plate and all 18 boys lifted him on their shoulders and made him the hero, as he had just hit a "grand slam" and won the game for his team.

That day," said the father softly with tears now rolling down his face, "those 18 boys reached their level of God's perfection."

 

Phillip's Egg

Phillip was born with Downs Syndrome. He was a pleasant child....happy it seemed, but increasingly aware of the difference between himself and other children. Phillip went to Sunday School failthfully every week. He was in the third grade class with nine other 8-year olds. And Phillip, with his differences, was not readily accepted. But his teacher was senesitive to Phillip and he helped this group of eight-year olds to love each other as best they could, under the circumstances. They learned, they laughed, they played together. And they really care about one another even though eight-year olds don't say they care about one another out loud.

But don't forget. There was an exception to all of this. Phillip was not really a part of the group. Phillip choose, nor did he want to be different. He just was. And that was the way things were.

His teacher had a marvelous idea for his class the Sunday after Easter. You know those things that pantyhose come in? The containers that look like great big eggs? The teacher collected ten of them. The children loved it when he brought them into the room and gave one to each child. It was a beautiful spring day, and the assignment was for each child to go outside, find a symbol for new life, put it into the egg, and bring it back to the classroom. They would then open and share their new life symbols and surprises, one by one.

It was glorious. It was confusing. It was wild. They ran all around the grounds, gathering their symbols, and returned to the classroom.

They put all the eggs on a table, and then the teacher began to open them. All the children gathered around the table. He opened one and there was a flower, and they ooh-ed and aah-ed. He opened another and there was a little butterfly. "Beautiful!" the girls all said, since it is hard for eight-year old boys to say "beautiful." He opened another and there was a rock. And as third graders will, some laughed and some said, "That's crazy! How's a rock supposed to be like new life?" But the smart little boy who put it in there spoke up: "That's mine. And I knew all of you would get flowers and buds and leaves and butterflies and stuff like that, so I got a rock because I wanted to be different. And, for me, that's new life." They all laughed.

The teacher said something about the wisdom of eight-year olds and opened the next one. There was nothing inside. The children, as eight-year olds will, said "That's not fair. That's stupid! Somebody didn't do it right."

Then the teacher felt a tug on his shirt, and he looked down. "It's mine," Phillip said. "It's mine." And the children said, "You don't ever do things right, Phillip. There's nothing there!"

"I did so do it right!" Phillip said. "I did do it right. The tomb is empty!"

There was silence, a very full silence. And for you people who don't believe in miracles, I want to tell you that one happened that day. From that time on, it was different. Phillip suddenly became a part of that group of eight-year old children. They took him in. He was set free from the tomb of his differentness.

Phillip died last summer. His family had known since the time he was born that he wouldn't live out a full life span. Many other things were wrong with his little body. And so, late last July, with an infection that most normal children could have quickly shrugged off, Phillip died.

At his memorial service, nine eight-year olds marched up to the altar, not with flowers to cover over the stark reality of death....but nine eight-year olds, along with their Sunday School teacher, marched right up to that altar, and laid on it an empty egg....an empty, old discarded pantyhose egg.

And the tomb is empty!

   

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