A smile just for me

His smiles were a long time coming. They were there under the surface like daffodil bulbs deep beneath the earth.

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.

Matt discovers solids

Food Glorious Food!!!

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.)

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

Nurturing Soil

Can a baby really be affected by our attitudes? We believe they can, and this frightens us. What kind of environment do we want to create for Matthew? We have a choice. We can allow fear and doubt and anxiety to be the spiritual food that Matthew eats. Even though Matthew’s development is not his fault, he will grow up feeling blame, not good enough and like he is a failure and disappointment. Clearly this is not the outcome we wish for him, so we can – with God’s grace – choose hope and encouragement to be the nurturing soil in which Matthew grows. We do not use the words “God’s grace” lightly as we find our own wells of hope and encouragement are far too shallow to sustain the nurturing environment that Matt needs. Our hearts get crushed by fear so quickly. It is only God’s grace. Only God’s GRACE that has gifted us with His Holy Spirit. The fruit of this beautiful Holy Spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self control. These are just what Matthew needs to grow into the man that God created him to be.

Matt's Grannies

Clouds and sunshine

The future…what a mixture of clouds and sunshine. There is a dark cloud of scientific report that tells us our child will be delayed. That he might not sit and walk until way after other normal children can. I imagine myself carrying a 5 year old. I see my child not being able to talk to me. My heart hurts and the dark cloud thickens. And yet there are the promises that we received from Our Father. There WILL be a banner of God’s goodness over Matt's life. He IS the Son of Light, the Son of Africa, a Joybringer, A Reflector of His Glory. And so the sunshine breaks through the clouds and there is a growing curiosity in our spirits. Like a children wondering what their parents have bought them for Christmas, we wonder how God WILL bring to fruition all He has promised over Matt's life. We join Moses, Joshua, David and so many others who lived with God’s promise burning in their hearts.

No God not that task, please give me a nicer one

So I made a commitment to follow Jesus. I stand with those who say "we pick up our cross and go where-ever He may call us". "He is my Lord" – I confess in church on Sundays. The songs I sing include words like “not my will, but Yours”.

And yet I question the task that He has placed before me.

Do I say to my King and my Lord, I will do anything but this? What does that say of my commitment, my sincerity and the integrity of my faith?

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.

The path is not necessarily to comfort and easy living. Sometimes the road is paved with pain and suffering. His reward for those who obey cannot be measured in wealth, health or pursuit of happiness but in deeply refined love, peace and joy. These are eternal . They cannot be robbed, stolen or rusted on this earth. And through out the journey He is faithful to us and He will not leave or forsake us.

"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

Matt Comes Home

----- Original Message -----
From: tooke@webmail.co.za
To: Our Friends and Family
Sent: Thursday, October 19, 2006 8:58 PM
Subject: Great news

Matthew came home yesterday just after his 3 week birthday!

It's wonderful to have him with us all the time, and such a relief not having to travel through to the hospital a couple of times a day. Those incredible sisters and nurses in the neonatal ICU really grew attached to MJ and one day we were greatly amused when we read in the (usually sterile and boring) nursing process "Took feeds adequately, observations normal, he's so cute - he's our favourite."

Feeding remains a challenge, but the nasogastric tube is out and there is definite progress.We have also learned that babies are not machines - what works one time will not necessarily work the next!

Thanks to all for their messages of support, visits and meals - we really appreciate it.

Love Lloyd, Jacqui and MJ

Taking it one day at a time

So my child has a medical label, Rubinstein-Taybi Syndrome. What does that mean? It could mean a whole variety of things – from mild learning delay to severe disability. No one can tell me the outcome – the story has not been written yet, the song has not yet been sung. There is so much potential, life, possibility all held together in the life of my son waiting to break out and open like a seeds waiting to burst forth from the pod, like house dogs waiting to go for their daily walk.

Yet all this potential is as fragile as a fragrance in the wind. All it takes to eliminate hope is to consider the “what ifs” of the future. What if he can’t speak? What if he can’t go to a normal school? What if he looks funny and the other children tease him? What if I die who will love him and hold him?

If our baby boy was born normal, would we worry about if he would become paralysed in a car crash at the age of 12 or if he would become addicted to drugs as a teenager, or if he would get cancer in his young adult years? No, with normal children you just look to your hopes and dreams for the child.

And so we choose to receive strength from God for what we have to face TODAY. And we have discovered something so amazing, is that God really does give one strength to deal with all the challenges that one faces at any one given moment. People ask us how we are coping, and we can truly say the burden has been light. That is because Jesus is carrying today’s burden, and we have promised ourselves that we will not carry tomorrow’s.

The Invisible World

I was lying in the hospital ward holding my precious son. For a number of days Lloyd and I had been trying to come to terms with the fact that our son had a “syndrome” and he may become “disabled” or “delayed”. As I lay there that Friday evening, trying to watch television so that I could feel like my life was not that abnormal, I realised something. All the adverts, all the people portrayed in the media are what we would term “able-bodied”. I contemplated the impact it would have if a nappy ad included a child with Down Syndrome, or if a beer ad featured a man with one leg. What if a banking ad had someone who was blind with a guide dog or a chocolate ad starred a person with cerebral palsy. There are so many people who are affected by disabilities in our world, yet they are part of the invisible world. These invisible people are ignored by media and much of society. And looking down at my beautiful boy I marvelled at the richness and depth of his life, but to so many he will be invisible.

The KING of the Neonatal ICU

Matt was almost three times the size of all the other babies in the NICU – most children that needed special care were premature or tiny triplets.

Our big guy soon got a nickname: “THE KING”.

Self Sacrifice

I was about to be discharged from hospital after my caesarean section. No feelings of joy or anticipation filled my heart as I was to return home alone, leaving my 4 day old son in the high care unit. How I wanted to short-cut his recovery so that I could have him home. Natural feelings you might say. But I realised that it was all about my need. In fact his need was to get the medical care that only the high care unit could offer. I then realised that up until that point in my life all the “selfless” things I thought I had done had in fact always benefited me in some way. Having a child and being committed to meeting his needs means self sacrifice: Truly doing things you don’t want or like doing; or not doing things that you so want to do, in order that your child’s needs are met.

The Email that Introduced Matt to the World - 28th September 2006

----- Original Message -----
From: tooke@webmail.co.za
To: Our Family and Friends
Sent: Thursday, September 28, 2006 1:50 PM
Subject: Matthew John Tooke

Greetings friends: from Kingsbury Hospital maternity ward.

For those of you who don't know, Matthew was born at 21h22 on Tuesday 26th September. The delivery was by caesarian section after a trial of normal labour failed - probably because he came out at a massive 4kg! He is very cute and has more hair than his father! Jax was amazing throughout the whole experience.

I think most of you know we had a worrying scan at 20 weeks which showed a few abnormalities that raised concern about a possible genetic or early developmental problem in our baby. We elected not to undergo further testing and considering the circumstances were blessed with a feeling of peace during the four month wait.

After Matthew was born, we had such a mixture of emotions - relief that he was not critically ill, but also concern as there were some abnormal features - mostly involving his thumbs and a few mild facial features.

He is now off oxygen, slowly trying to learn to breast feed, and spends most of his time out of the high care, in Jax's room. He has been diagnosed with a very rare condition called Rubinstein-Taybi syndrome. People with this syndrome have a varying amount of medical problems and also developmental and intellectual delays. They are usually happy, friendly and loving children.

It's been quite a roller-coaster of emotions but what Jax and I have decided is as follows:

1) Matthew is Matthew and not a syndrome. We want to get to know him as a little person first and foremost.
2) He has a potential, and whatever that potential is, we will attempt to to help him to reach that.
3) It is difficult and scary when we look ahead into the future, and have decided to take one day at a time.
4) Although we don't understand God's purposes, we continue to try and hold on to His love and promises.

So many of you have already played such a part in Matthew's life through prayer and support during the pregnancy and we hope that you will continue to do so as we journey forward with this special little boy.

Love Lloyd, Jax and Matthew.

The beginning: 26th September 2006

Matthew was born on the 26th September 2006. So many of you have prayed for him - for which we are so grateful. The clear message from God is that Matt will teach us all loads and bring us joy. So watch this space...