I am a little boy

For Ben 

I am a little boy, my favourite colour is red, when the evening comes around I never want to go to bed.

I am a little boy, I like playing with my whoopee cushion, I like dinosaur stories especially when my brother and sister come and listen.

I am a little boy, I like splashing in the bath, sometimes bubbles rise to the top and I laugh and laugh and laugh!

I am a little boy, I like to cuddle with my Mum, but when my Dad comes home from work I know that he's most fun.

I am a little boy, ladies often say I'm hansom, they comment on the length of my eyelashes, I oblige by fluttering at them.

I am a little boy, but I can't see you come and go, I know that I'm part of the world if you stop and say hello.

I am a little boy, I like banging on my drum, but I know that I'm different, someone has to change my bum.

I am a little boy, I used to eat just like you, chocolate pudding was my favourite but now I'm fed with a tube.

I'm just a little boy and sometimes I get scared, when people talk about me as though I'm not really here.

I am a little boy, on my birthday I was six, my parents know they're lucky, I am as old as this.

I am a little boy, I appreciate all you give, the world says that I'm different but it's you who says how I live.

I am a little boy, I 'll teach you love and joy, when you look at me I hope you see, I am a little boy.

by Sally Fletcher

Kidney Bean

Kidney bean

Could you ever know all that you mean? I've loved you since you were a kidney bean!
So I'll try to be just who I am, before I ever heard the word canavan.   by Sally Fletcher

I Am the Child

I love this poem, I read it if I am feeling sorry for myself and want to remind myself how Ben must feel. I keep a copy of this poem in the front of The Ben Manual so that anyone who cares for Ben sees it. It was written by the father of a child with Canavan Disease.

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 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 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

by Keegan's Dad

Welcome to Holland

Whilst I was pregnant with Ben someone I know who was taking a class in childcare showed me this poem and I cried over it and blamed the reaction on my hormones. When I found out that Ben had special needs I asked her for a copy of this poem, it still makes me cry but it explains it better than I can.

Welcome to Holland by 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 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.

Prayer

We had the following prayer read at our youngest son Sam's service of thanksgiving in August 2008.

Dear God, we thank you for the gift of this child to raise, his life to share, his mind to help mould, his body to nurture, and his spirit to enrich.
Let us never betray his trust, dampen his hope, or discourage his dreams.
Help us, dear God, to help this precious child become all you mean him to be.
Let your grace and love fall on him like gentle breezes and give him inner strength, peace and patience for the journey ahead.

Sam & Ben

Heaven's Very Special Child

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 progress may seem 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 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 it 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 this gift from heaven.
Their precious charge, so meek and mild is Heaven's Very Special Child.

by Keegan's Dad