Five years ago today we learned Elle’s diagnosis. As we sat down to right this post and reflect on the last year, one thing that stuck us is that it is hard to remember what life was like before Rett syndrome became a member of our family.
What we realized is that the last five years have brought us the opportunity to meet some really amazing people – who we likely wouldn’t have otherwise met. The last five years have also helped us to truly appreciate the goodness in humanity and to appreciate all of the people who we are blessed to have in our lives. Rett syndrome has taught us in a very special way to appreciate what we have and can achieve and not to focus on what we don’t have or what we wish we had. It has provided us with a different and better perspective of life.
So this year our focus is not about what we can and can’t do, or what Elle can and can’t do, but more about just living. Although we could write pages about our challenges and our worries, or share with you the successes and achievements of this past year – we won’t. What we will do is acknowledge that we all experience worries and celebrate successes; they might just be different. This year we just want to leave you with this – Rett syndrome is a member of our family, with whom we can’t remember living without. While we aren’t giving up on finding a cure or a treatment, we have found our “normal” and just work on making the best of every day.
As in the past five years, we continue to receive tremendous support from the Paris Mounties. On January 27th, 2018, we will be hosting the 6th Annual Ref4Rett Event at the Brant Sports Complex in Paris. This year’s event is set to be another great event and will once again feature two hockey games. The first game will be an alumni game between the 1996 Championship Paris Mounties Alumni and the 2014 Championship Paris Mounties Alumni. The second game will be the last regular season game between the Paris Mounties and the Ayr Centennials. Tickets to the event are $8 each and include admission to both games and can be purchased at the door. Along with the great hockey, there will also be a silent auction. Our goal this year is to raise $40,000.00 for the Ontario Rett Syndrome Association’s (O.R.S.A.) Hope Fund which is dedicated to Rett syndrome research. Check out our website (www.ref4rett.com), like us on Facebook or follow us on Twitter for more details as they become available.