Friday, May 6, 2011


A full conference day is behind me. Tired eyes I sit here with a precious 15 minutes internet access to reflect on the abundance of experiences today presented. Sitting in a large circular conference venue with over 200 other participants listening to multiple interesting speakers all bringing to light different aspects of RTS. Meeting RTS parents from Spain, Norway, Denmark, UK, Scotland, Netherlands and USA whose hearts are so similar to mine. I have mental images of the various RTS people I have met today - some in wheel chairs, some babies, toddlers, teens and some older, some singing and dancing on stage, others running, some crawling, some talking some not. My emotions have rollercoasted from the excitement of meeting more and more on the same journey, to sorrow as I hear others' journeys that have been harder than ours, to a strange mixture of inspiration and anxiety when I look forward to the potential future of Matt, to joy watching Matt engaging with other kids who look much like him, to satsifaction from getting those rare aha moments in relation to understanding Matt better. The day is brimming with too much to process. It will take me a month or more to untangle all the threads of today. But it is so good. I will enjoy mulling over this experience. And there is still more to come tomorrow.


Cindy said...

Your impressions sound so similar to ours last summer in Ohio. I'm sooooo glad you are there! You will return with much more insight into your family's future.

Nicky said...

Loving your account of all the different emotions you are experiencing on this adventure, Jax. I am living the conference through you, so so appreciate your honesty and "real" reflection xxx

Jenna said...

Hi Matthew
My name is Jenna and I came across your site. U are an inspirational brave courageous fighter, and a hero.
I was born with a rare life threatening disease.