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.
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, September 30, 2006
Thursday, September 28, 2006
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.
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.
Tuesday, September 26, 2006
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