Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.
Saturday, November 3, 2007
Wednesday, October 24, 2007
Sleeping baby
There is something heavenly about a sleeping baby. Something that is not of this earth. Am I sensing God’s presence? Is it that He is watching over this child so intently that anyone who comes into the room can feel His shepherding Spirit? The Shepherd that leads one beside quiet waters and restores one’s soul.
Sometimes I stand there soaking in the rest and when I finally close the door behind me I feel like I have been away on a long, rejuvenating holiday.
Saturday, September 29, 2007
Matthews 1st Birthday - 26th September 2007
Monday, September 10, 2007
On his Father's shoulders
A few days later I was praying with a friend of mine, and God gave me a very clear picture. The same scene – the race at the school, parents on the stands, children crossing the finish line, where is our little boy? And then Matt rounds the corner – this time not alone – but riding on the shoulders of Jesus. Matthew’s face is bright with joy. Jesus’ eyes shining with laughter. Neither very concerned about the race at all. I felt God saying “Jax, I have Matt just where I want him, He’s with me and that’s all that counts”
Again God’s peace removed the ache.
Every time I see little Matt enjoying the ride on his father’s shoulders it reminds me that he is also riding his Father’s shoulders.
Saturday, September 1, 2007
Love
"If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing." 1 Corinthians 13: 1-7
nothing
nothing
We are nothing without love
It does not say if we learn to crawl long after most children crawl we are nothing
It does not say if we struggle to learn how to speak we are nothing
It does not say if we grow up dependent on others we are nothing
No it says if we have not LOVE then we are nothing
This is helping us to free ourselves from worrying about Matt's development.
Rather, our goal is to let Matthew know he is LOVED
And to help him unlock the deep well of LOVE that God has placed in his heart...
For then he will have LOVE and he will be something
Sunday, July 1, 2007
Monday, June 18, 2007
Uncle Neeb is 42 - 18th June 2007
Saturday, June 16, 2007
Matt’s dedication: Our dedication
To love Matthew.
To help him be all that God has made him to be, not what we think he should be or what others say he should be.
To delight in the things he can do, rather than despair in the things he cannot do.
To share our relationship with God with him.
To let him know that he is precious and that his life has purpose.
To learn from him.
To use our experiences from him to help others.
To hold him close, but never too tightly, knowing that God has got Him in his hands.
Matt’s dedication: Poem from Stanzi
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: Quotes
Jesus chose to be around small children a number of times in his ministry, often over the objections of his disciples. Sometimes he seems to have done this in order to hold children up as examples of the childlike qualities that enable God's Realm. But maybe, sometimes, he just wanted to hold them.
Matt's Dedication: From Grandpa (Lloyd's Dad)
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
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)
Now - what IS this thing - called Love?
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.
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.
when you show your independence by showing intense interest in something or an absolute dislike for something else. There is sooo much to
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
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 -
Thursday, June 7, 2007
The places where Matt has bathed
There must be quiet a few things that a hot bath won't cure, but I don't know any of them. Sylvia Plath (American Poet & Novelist)
Wednesday, May 30, 2007
A smile just for me
Many months I waited. Looking at him, looking at his eyes. Nothing, no recognition. His rare smiles only reserved for bright colourful objects, but not for his mother. Other mothers were already enjoying the delights of loving smiles from their precious little ones.
I felt like I was all alone even when I was with him.
2 months old
3 months old
4 months old
5 months old
Slowly he started seeing me. At first it was just a fleeting glance that seemed to rest a little longer on my eyes. Then he would keep my gaze for a few seconds, curiously watching my facial expressions. Until there were days when he would stare endlessly, fascinated. Every time he looked at me - joy filled my being like delicious hot chocolate on a freezing day.
Yet I longed for a smile. Not at the luminous yellow and green book that he loved so much, but at me. A smile just for me. A smile that told me that he knew me and that he was happy that I was in his life. A smile that said he knew he was loved.
There were times when I would return from being out shopping having left him in the care of my mother or husband. I was excited to see him, yet always a little saddened that he would not seem to notice my return. There were no smiles.
6 months old
7 months old
8 months old.
Today he was sitting – still wobbly but a lot steadier than he has before – I was holding up a rainbow coloured wheel, spinning it gently in front of his face. He was captivated by it. But then he did something so unexpected. He slowly lifted his head towards mine, and shakily looked me in the eyes. And he smiled.
He smiled at me.
A smile just for me.
I smiled back at him. His smile broadened, his eyes brilliant with laughter and warmth. Tears filled my eyes. Thank you my God for giving me the patience to wait while the beautiful flower bulbs have been growing and sprouting unseen for so many months. Today they have broken the soil’s surface and stand tall, splendid and magnificent, bringing delight to all who see.
Monday, March 26, 2007
Wednesday, February 28, 2007
First visit to the beach
One cannot collect all the beautiful shells on the beach; one can only collect a few, and they are more beautiful if they are few.
Anne Morrow Lindberg (American writer & aviation pioneer.)
Sunday, January 21, 2007
Poem: The Peace of Wild Things
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
Friday, January 5, 2007
Nurturing Soil
Sunday, December 31, 2006
Sunday, December 24, 2006
Clouds and sunshine
Thursday, November 16, 2006
No God not that task, please give me a nicer one
And yet I question the task that He has placed before me.
Can I be a follower if I am not prepared to follow? Is Christianity all about God making my life better, easier or more comfortable? Is that His promise to us?
No!
He calls us to become like JESUS whatever it takes.
He calls us to walk in radical obedience, whatever the cost.
"Do not pray for easy lives; pray to be stronger. Do not pray for tasks equal to your powers; pray for powers equal to your tasks. Then the doing of your work shall be no miracle, but you yourself shall be a miracle. Every day you shall wonder at yourself, at the richness of life which has come to you by the grace of God." - Phillips Brooks