If you asked me how I was feeling last Sunday, the answer was “Cri-du-Shattered”. The inaugural International Cri du Chat Awareness Week was busy and exhausting! It was also very uplifting and inspiring. I talked about CDCS even more than usual and caught up with 12 families in person, 2 more over the phone, and lots more on Facebook. I shared our brochures at kindy and at therapies, and made key rings for families affected by CDCS. “Cri-du-Shattered” just popped out when I tried to describe how I was feeling. I like it and I think I’m going to be using it more often! As a group, we were certainly successful in attaining the support of newspapers across Australia, and all around the world, due to the hard work and persistence of many families. It was wonderful to see so many families sharing their personal stories, many for the first time, to raise awareness and to give our kids a voice. It would have been wonderful to secure some TV or radio time too, but these can just be goals for next year :). On Saturday, we celebrated at Paradise Country with SIXTY-SIX PEOPLE who are directly affected by Cri du Chat Syndrome. 13 people with Cri du Chat, ranging in age from 10 months to 27 years, were a part of this number. The rest were parents, grandparents, siblings, aunts, uncles, cousins, friends and carers. This number in itself reminds me that we are not alone. Something to really celebrate was the family who attended from the Tweed who contacted me after reading the Sunday Mail news article. Saturday was their first meeting with any other families with CDCS. Their son is 14.
The Gold Coast put on some beautiful weather for our day out. Paradise Country staff members were very accommodating and most guests enjoyed the barbecue lunch after a morning tea that was generously donated by Brumby’s at Upper Coomera. I was so busy chatting that I didn’t see any of the shows and only took a quick stroll with Claire through the animal farm on the way out. I’m sure this was the case for many of our families! Perhaps the most positive part of the whole week for me, was seeing the enthusiasm with which families approached the task of raising awareness, and seeing the unity that is growing in the global Cri du Chat (5P-) family. Once again, I am thankful for Facebook in assisting these connections to be developed and maintained. I am now even more enthusiastic about the planned family weekend for May 2013. I am a little concerned that with the growing interest, we may soon outgrow the venue that had been selected! This of course is wonderful news and I look forward to sharing updates as our plans become more concrete. We want the weekend next year to be a valuable and rewarding experience for all families involved, and we want as many families to be able to attend as possible. For our day on Saturday, we had two families travel significant distances from interstate to join the celebrations. Our youngest new friend was the beautiful Miss Ella, who had travelled by car for three days to meet us all! I was fortunate enough to share some time with her family on Friday too. It was nice to pass on the torch to a new tiny person who is the first person with CDCS that we have met who is younger than Claire…Claire is growing up! 😉 Ella is adorable and we wish they lived closer!
Thank you so much to all of the friends and family who changed their profile picture to reflect that they were raising awareness. Thank you to those who shared links promoting CDCS. Thank you to those who spoke about CDCS (or Claire) during the week to someone who may not have been aware that this disorder even existed. Thank you also to those who donated to the Cri du Chat Support Group of Australia.
So…while I was “Cri-du-Shattered” by Sunday, it was an amazing week and I was really proud to be a part of it. I hope you were too :).