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.
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.
Thursday, August 13, 2009
A Matt look-alike
Subscribe to:
Post Comments (Atom)
5 comments:
I'm so glad that you finally got to meet another RTS sweetie. I'm sure it was very healing for the both of you.
It's wonderful that you were able to encourage Sam's parents...I know meeting other RTS kids and parents was and continues to be so encouraging for Tom and me.
yes that is wonderful. I have been lucky to have met so many parents and children with RTS over the last 3 years. It is a wonderful experience.
I am glad you had the chance to meet another family with RTS. I have had a chance to meet other families over the last couple years and it has helped me so much! I understand your joy! Kelly F
This is so encouraging isnt it. To be there for someone else in your exact same situation, and to have someone there for you. I also understand your joy!
Post a Comment