I am the Child

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 or 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 about the world about 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 with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world 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 dependant on you in these ways. My gift to you is to make you more 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 simple things. I am not burdened as you are with the strifes and 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 about how 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.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very  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.

A GIFT FROM HEAVEN

"I'm sending you a child " God said, " to take care of for me. you'll need patience, and understanding 'cause this child, he cannot see. you'll learn the beauty of a smile,you see, his learning will be slow. But with the love that you will give I know that he will grow.

This child will bring you pride and joy with each new thing he learns though there will be times be brings you worries and concerns. But you're the kind of parents that I know can make it through. That is why I'm sending him to the two of you.

The lessons he will teach you not everyone will see, because he will also have what's known as Ring 20. His learning will take effort and progress will be slow but the love and joy he'll bring you few "normal" kid's parents know.

I'm not sending him because you've sinned, nor to punish you, I'm sending him to you because I know you'll love him too. This child is a special child I wouldn't place just anywhere, I want him with a family I know will take good care.

And after searching wide and long the whole world through and through, I decided that this gift of love would be sent from Heaven to you."

Celebrating Holland

I'm Home I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. Inthose first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Challenged

Some say I am disabled, But you know that isn't true. I simply have a challenge A little different from you.

My slight inconvenience, has taught me Things they could not know. Each obstacle is a victory, Enabling me to grow.

I'm not really any different, I cry, I laugh, I snore. I don't want to be treated As if I'm not a person anymore.

Out of good intentions, People are afraid to let me try. But sometimes I have to fall, And sometimes I need to cry.

God gives me strength and dignity, And the courage to be all I can be. For He doesn't see me as disabled, He just sees me as me.

Our Gift of Love

We first look for reasons

On where to place the blame

Though their health may be different

Their heart is still the same

We're sent a child with so much love to give

With a fight inside

And a reason to live

To be touched by a love

That few will ever see

Our child can show the world

The way love should be.

My Anticipated Son

I anticipated complaining of a waking baby;

Not of being grateful he's able to wake at all.

I anticipated the wonder of time rushing past,

Not of reflecting on milestones so small.

I anticipated crying at immunizations and bumps while learning his way;

Not of agonizing at more tests, evaluations, and word of more delays.

I anticipated choices over preschool, clothes, and scout troops;

Not of choices between hospitals, specialists, and which support groups.

I anticipated loving him, but enjoying his independence from me soon;

Not of loving him so much I'd want to keep him sheltered in my cocoon.

I anticipated health and perfection when my baby was inside, thinking anything less would be tragic;

But now that he is here, my special son had worked some kind of magic.

I anticipated anger and disappointment at this fate;

Not the joy and growth and knowledge that have become mine as of late.

I anticipated something different, that is certainly true;

But that's because I never could have anticipated one I love as much as you.

To Alexandra On Mother's Day, 1996

My sweet Angel, What a precious gift God has given to me in you. At first, there were so many things I did not understand . . .

Why would God give me a child who was not perfect . . .

I did not understand that it was I who could not see. I grieved for all you would never do . . .

For the first steps you will never take, For the tricycle you will never ride,

For the roller skates you will never own,

For the first date you will never have,

For the prom you will never go to,

For the joy that you will never know of having your own child.

I grieved for myself . . .

For never being able to hear you say " I love you, Mommy"

For never being able to teach you all the things I wanted to share with you,

For never being able to see you in a lovely wedding gown,

For the grandchildren I'll never have.

The pain of losing those things will never, ever go away.

But now I know . . . now I understand . . . You are a very special gift.

What you have to give transcends all those things I have grieved.

How can I possibly tell you how very much you have taught me?

I am amazed that I could learn so much from a child. . . .

A child whom others think has so little to give this world . . .

And cannot speak, but you say so much . . .

You infinite patience without complaining,

You're pure and simple innocence,

Your tolerance of so much that others could not bear,

Your sheer delight in even the simplest things,

Your quick, beautiful smile even when all is not well with you.

You have shown me things in myself that I never knew were there. You have taught me so much about life.

Now I know . . . now I understand . . .

It is you who gives me strength,

It is you who has so much to give and so much to teach me.

God has blessed me with a very special gift . . . the gift of Alexandra. I love you.

Some Mothers Get Babies With Something More

My friend is expecting her first child. People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have given
throughout the pages of time. She says it doesn't matter whether it's a boy
or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin. Every mother wants a baby so gorgeous that
people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on page 57,
column two). Every mother wants a baby that can see, hear, run, jump and
fire neurons by the billions. She wants a kid that can smack the ball out of
the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that
didn't fuse, a missing chromosome or a palette that didn't close. Most of
those mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the
fourth grade when you didn't see the kick ball coming and it knocked the
wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even
years later, take him in for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as they bear the brunt of
devastating news. It can't be possible! That doesn't run in our family. Can
this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles with nary an ounce of
flab or fat, virtual powerhouses of strength with lungs and limbs working in
perfect harmony. Then the athlete walks over to a tote bag, rustles through
the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third
knee surgery, or on a trip home from an echo cardiogram, there's no such
thing as a perfect body. Every body will bear something at some time or
another. Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen, quietly treated with trips to the doctor, medication or
surgery. The health problems our children have experienced have been minimal
and manageable, so I watch with keen interest and great admiration the
mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out
of a wheelchair 20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred specialists yammering
in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned
souls explaining how God is at work when you've occasionally questioned if
God is on strike. I even wonder how you endure schmaltzy pieces like this
one -- saluting you, painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer for this, you
didn't jump up and down in the motherhood line yelling, "Choose me, God.
Choose me! I've got what it takes." You're a woman who doesn't have time to
step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the
strength of a draft horse while holding onto the delicacy of a daffodil. You
have a heart that melts like chocolate in a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can be warm
and tender one minute, and when circumstances require, intense and
aggressive the next. You are the mother, advocate and protector of a child
with a disability. You're a neighbor, a friend, a stranger I pass at the
mall. You're the woman I sit next to at church, my cousin and my
sister-in-law. You're a woman who wanted ten fingers and ten toes, and got
something more. You're a wonder.

Twelve Days of Christmas