Life is

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.

by Mother Theresa

Retelling the Gecko story

Matt's physiotherapist read the story of how Matt enjoyed chewing on a gecko, and this inspired her to write the following:

Analysing the action learning experience, interpreting Matthew’s point of view during the process and reflecting this back to him

A present from his neuro-developmental physiotherapist Pam Hansford

Take a dekko at this Gecko!
Is it ‘lekker’? I really want to know
So, closer and closer I go –
thinking, should I grab it, stab it
or let it go?

Touch it, jab it
reach for it and nab it –
pop it in my mouth
(uncouth – but quite delectable!)
savour the flavour …………………

Oh no, no, I’ve been caught
so all my careful planning,
(organising & sequencing)
has come to naught!

Did I ever mention
that fascinating situations
fraught with possibility
are often brought
to a sudden frustrating halt
by other’s intervention -
Ruining all those special plans I wrought.

No wonder I yell when others direct me into new situations!

(I act upset when it seems as if I am being corrected before I’ve had a chance to do something wrong! It takes time to learn as we build our best base of support in partnership with others. We discover slowly that “beyond independence lies inter-dependence”. Together we can go further, faster achieving the best outcomes!)

As far as I can see, it’s only self-directed activity
that takes me (and everyone else incidentally)
just where I want to be!
But – luckily for me, those in my immediate vicinity
and wider community can (along with me) generally see
Infinite possibility ……………………

So watch this space for more news of me!

Grandpa's Poem

In memory of a new day in terms of Matt’s eating habits, his grandpa wrote the following poem:

You can dine in the aura of art deco
Or by waves with their murmuring echo
Or for a crucial event when flowers are sent, at the site of an old Roman Fresco.
So long as you know that the special today, is a squirming, delectable Gecko

- John Tooke

My Name is I AM

I was regretting the past
And fearing the future.
Suddenly my Lord was speaking to me:
"My name is I AM"
He paused
I waited. He continued,
"When you live in the past
with its mistakes and regrets,
It is hard. I am not there.
My name is not I WAS.
When you live in the future,
With its problems and fears,
It is hard. I am not there.
My name is not I WILL BEE.
When you live in this moment
it is not hard. I am here.
My name is I AM."

By Helen Mallicoat.

Shared by Annemie.

Welcome to Holland

When I first read this story I was so struck by how accurately it described what we were going through. Thank you Emily Perl Kingsley for sharing this beautiful story.

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 are 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. 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 then 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.

Matt’s dedication: Poem from Stanzi

MATTHEW JOHN TOOKE

Matthew.
I have seen your river
bright and full and sparkling with fish,
green and gleaming things.

I have waded waded into
the water deeply,
clumsily hoping to catch words
to show this picture, this love, this dream.

Matthew.
A man – a man – once made many fish from two
leaving over so much
the basket-carriers didn’t know
what to do.

This man kneads the bread of life,
feeding need until more is left
over than all we ask or imagine;
Cups that flow over
And over
And over

This man, this GOD I know,
His words changed into a stream
and the stream flows with life.
Can you hear Him calling
the fishermen to fish until
they become the stream?
Calling soft-handed masters to wash
Their servants’ dusty feet,
and hoarders to cast
their bread upon the waters?

MATTHEW.
THIS is what I pray for you:

Wide, wild water
freshly living and filled
with lively grace,
silver fish that miraculously
multiply.

Matthew J.Tooke may
your life be filled with
pools of greenness like your eyes
the blue of water,
grey pregnant skies;
may your life be flooded
with these things I love for you –
may yours be the river
of revelations twenty-two
and yours the water
of psalm twenty-three.

Little precious boy much loved
may you truly, splashingly
LIVE
and may your swimming, soaring soul
always and in truth
be free.

Matt's Dedication: From Grandpa (Lloyd's Dad)

MATTHEW JOHN TOOKE

Man’s history often intertwines
With strands of mystery from the weavers hand
And Grace is often seen from weeping eye
As counter to our hopes of bright benevolence

Thus we all with puzzlement and with dread
Received the news of something different and obscure.
That seemed to mark a harder weaker poorer life
For one we all held dear and longed to take upon our breast.

At first it seemed we had the right to mourn what could have been
And see, in all the trial and stress of giving nourishment
To one who hardly knew the method and the means
the anxious cause and reason for our fear.

And more malignant yet reports of deeper threat
That strangled the vital capacities to breathe and live.
Four times it seems the journey went to the limit of his life
And revealed the fragile, journey of our infant child

But from his soul there came a surer sign
A toughness to endure, to carry on
Courage like a lion began to beat and this small warrior
Like Hercules to kill the snake, reached out to claim his right to live.

And peeping from his seeking eyes came looks
That seemed amazed at us as though
Nothing quite so good or cute or grand
Could possibly be true or real

And smiles exploding from beneath his nose
Quite made the world ignite with mirth
and we forgot all else to take his lead
and follow in his bright delight.

And fists that clench and legs that kick
More dangerous than a Springbok pack
And voice that cries imperiously
“Come and get me if you dare!”

One thing is sure it is our hope
That in some loss can lie perfection’s way
That weakness is the preface to a strength
That uncertainty is quite the cause for faith

The poor will prosper and the last come first
The least will yet be greatest you will see
And service may be offered best
Bound up in the cords of small humility

So Welcome Matt you are much more than hope
You foster triumph as you go
We hold to you in ever greater joy
To banish fear and past regret

Here are our hands our hearts our help
Our arms to lift the burdens on the way
Your dates with destiny we’re sure
Are kept within the Grace of God.

Matt's Dedication: From Mormor (Jacqui’s mother)

And this is for you Matthew.

And it is about a few of the reasons Why I love you

Now - what IS this thing - called Love?

Love is:
funny enough very hard to define - but it gives us a nice, warm fuzzy feeling that keeps on growing - and my love for you just keeps on growing - deeper and deeper - and I am SO happy that you were born into our family.

Love is also:
your sweet smiles that make the sun come out - even in bad weather. You are holding the light, which shows US the way - even your strength is a great example to us.

Love is even:
when you show your independence by showing intense interest in something or an absolute dislike for something else. There is sooo much to

learn - and will we all love to help you. :-)

Love is definitely also:
the many special moments we have had together - right from the beautiful, starry evening when you were born - to the day when you asked me for a sip of milk from a really big cup. I simply love those impromptu moments and am looking forward to many, many more :-)

Love is also
when God hears all our prayers for you - right from people in places near the end of Africa right through to people in places near the top of Europe.

But Love is so much more, Matthew
what really counts - is for all of us to live lovingly together - just like God always wanted his children to live - and I am sooo thankful, that you were born one of God's children - and that you are the son of Jacqui and Lloyd -

and that you are my grandson. :-)

Poem: The Peace of Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.
— Wendell Berry