It proved to be very tricky to get all three cutie-pies to remain seated, looking at the camera and smiling - despite a very energetic rendition of Wheels-Of-The-Bus by yours truly. So this pic was the best of the lot.
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.
Wednesday, December 15, 2010
RTS Cape Town
It proved to be very tricky to get all three cutie-pies to remain seated, looking at the camera and smiling - despite a very energetic rendition of Wheels-Of-The-Bus by yours truly. So this pic was the best of the lot.
Thursday, November 12, 2009
And another RTSweetie in South Africa
Wednesday, November 11, 2009
A growing RTS family in South Africa
We met at Tamsin's family home just before she was heading off to the hospital for the day. I love these ladies like they are my own sisters, even though we hardly know each other. Matt was a little subdued during our time with them, but I know he was able to show them that their future is not all doom and gloom, rather a hopeful place.
Please pray for God's strength for Tamsin and His protection and healing for Payton.
Thursday, August 13, 2009
A Matt look-alike
Last week Matt and I met a tiny little baby called Samuel. He has a full head of hair – dark black. He has a big red birth mark on his forehead. He has the cutest face. He has thumbs that are elegantly angled outward. He looks like a new born Matt, only smaller. He looks like he could be Matt’s younger brother. In some ways he is.
Yes I finally met another child with Rubinstein Taybi Syndrome. This was a day I have been longing for and dreaming about for a long while.
Last week Thursday Samuel came to visit us with his mom and dad. I had been in telephonic contact with them for a few weeks and finally things worked out for us to meet. I know that Sam’s parents are still trying to find their way in "Holland" and so they were probably not so excited about meeting me as I was to meet them. But for me it was so precious – knowing that we are not alone anymore. Being in physical contact with someone on the same journey – words can’t describe that feeling of camaraderie. I know our friendship will grow from here.
Pray for little Sam, who was born prematurely, and is facing a number of health challenges. I was so overwhelmed and so overjoyed at meeting them that I forgot to take photos. Hopefully we will be able to visit them soon and I can get some pics – so watch this space.