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.