Thursday, October 19, 2006

Matt Comes Home

----- Original Message -----
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

Sunday, October 15, 2006

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.

Wednesday, October 4, 2006

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.

Monday, October 2, 2006

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”.