Who loves plums?

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.

Celebrating a vomit free day!

Matt vomits on average once a day, that’s over 465 vomits so far!

Matt has vomited on me, on his dad, on the couch, on the floor, in his bed, in our bed, in his high chair, in the bath, in church, in the pram, in the car, at our friend’s house, at the shop…

Matt has reflux problems – this means the food from his tummy sometimes comes back up his oesophagus. Add to this a sensitive gag reflex. And the result: VOMITS! When the reflux tickles the back of his throat he starts coughing, gagging and inevitably vomiting. And when he starts vomiting he can’t stop until he has cleared his tummy. When he has a cold, where the flem causes coughing, then the vomiting worsens.

Little Matt is a real fighter. You can see that he is uncomfortable during the vomiting, but afterwards he just gets on with life – playing, eating (again!), sleeping – whatever he was up to before the vomit happened.

Some days it really gets me down, especially as we are concerned about Matt’s weight. Other days its fine, we just get on with cleaning up the mess and feeding again.

I have found that one way of coping with an ongoing problem like this is to focus more on the vomit-free days, than on the vomit days. So in our house a vomit-free day is like a birthday or Christmas – greatly anticipated and greatly celebrated!

Water Play

Out come the wires

Matt showed his courage again yesterday when the wires were removed from his thumbs. It was a simple procedure that took place in the doctor's office. Matt didn't get anaesthetic, only oral pain-killers. Matt sat on the bed and the surgeon used a pair of pliers (literally) to pull out the wires. He cried a lot at the time, but within ten minutes he was fine. Resilient!

The holes have closed up and this evening Matt had his first bath in 3 and a half weeks. Matt still needs to wear his splints for another 3 weeks.

Look at these loooong things that were in his little hands!

Bandages removed - 3rd December 2007

After Matt's bandages were removed, tiny splints were made for his fingers. We were so impressed with the Occupational Therapist's ability to create these delicate, but sturdy, thumb supports.

Boxing gloves?

Matthew is initially confused by the big bandages on his hands.

However it didn't take him long to adapt and to find ways to still pick-up and play with his favourite toys.

Matthew's Surgery

Matthew was born with angled thumbs and undescended testes, both typical of his syndrome. On the 26th November he underwent surgery to have these two issues corrected.

The orthopaedic surgeon, working under a microscope, cut into the bones in the thumbs and straightened them. He put wires down the middle of the thumb bones to fix them in place.

The urologist found Matt's testes in his groin area and brought them down into his scrotum.

Amazing craftsmanship!!!


Waiting for surgery, unaware that his life is about to change!












Here is the brave warrior after he emerged from theatre...

Celebrating one year of Physio!!

Matt’s first visit from his physiotherapist, Pamela K Hansford, was on the 24th November 2006 when she came to our home. Since that time he has had regular sessions at her at practice. She has helped him make great progress. This post is to celebrate one year of physiotherapy – of stabilizing, stretching, and strengthening.

February 2007

March 2007

June 2007

November 2007

For a cellphone I will do anything...even try to crawl!

Sleeping baby

When I check on Matt as he sleeps I am filled with a sense of wonder. He is lying there -serenely, peacefully, contently. His face is captivated by restfulness. His breathing calms me as does the soft trickle of a mountain stream.

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.

Matthews 1st Birthday - 26th September 2007

The box is always more fun than the actual present.

Opening presents in Nature's Valley

Matt's birthday cap

Matt's birthday swim in Nature's Valley Lagoon

Matt's birthday celebration in Kirstenbosch Gardens

Cuddle time with his uncle, Kennet

Play time with Mormor (Danish for Grandmother)

Fun piggy back rides

Happy to be one years old!

On his Father's shoulders

I was spending time with some friends who have children the same age as Matt. I love to see how they grow and discover the world. Yet there is a tiny part of me that wishes Matt could do the same things that they can. I was trying to describe this feeling to Lloyd – “It’s like Matt is running a race at his school. All the parents are sitting in the stands watching the end of the race. The children come running in, a tight finish, everyone holds their breath to see who wins. But someone is missing; one child hasn’t finished the race. And then there comes little Matt – running determinedly, but slowly. Everyone watches as he crosses the finish line way after all the other children.” Lloyd was quick to point out that Matt isn’t running in that race - in fact there is no competition between him and other children. I knew this with my head, but my heart needed something more in order to remove the ache of seeing one’s child come last.

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.

Love

The Bible says that if we have not LOVE then we are nothing

"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

Matt discovers flowers