Today is the 6th anniversary of Elle’s diagnosis and once again a time for us to reflect on the last year and to try to share with you our experience in a few paragraphs – a challenge we know, because there is nothing simple about Rett syndrome.
Writing this post is always so hard…. not because we don’t have so much to share, but because it requires us to either just write some very generic post or to be vulnerable and share intimate details about Elle, and our family’s journey. For those of you who know us well, we don’t often put ourselves “out there” and almost always hold things close to the chest. This year, we decided to take a leap, to be vulnerable and share some details about where we are at. At the crux of it, this year reminded us not to get too comfortable.
We know that in the hierarchy of “special needs” or even in the Rett syndrome community, that we are blessed in that Elle can walk and talk, however the reality is that we are still living with Rett syndrome, just our version of it. When many of our friends are entering the stage in their parenting lives where they share stories of “it’s so great that the kids can just play while we get in our workout or read a book” or “we love the weekends cause the kids can get themselves up and we get a little sleep in” – this is not our reality and never will be, as despite how much Elle is able to do, she is not able to be left on her own for any amount of time. For us, this year has just been another realization of how our life journey is so different and will always be different from many of those around us. We know that some will say that those are just the sacrifices of parenting or that we are just being too self-centered in wishing or even thinking those things, but we would challenge that sharing these thoughts takes courage to verbalize and saying them out loud come at a risk to us. But perhaps it is our turn to be real, and to give those caregivers who feel too scared to verbalize their thoughts and say them out loud, a voice, or at least help them know that they are not alone.
We try to help people understand what is like to share our home and our life with Rett syndrome, but it is not easy. There are many days that we don’t understand it, because it changes and the impacts it has on Elle have changed. But as parents we are expected, and want to, understand it and do everything that we can to meet Elle’s needs. But we are not experts, we do not have medical degrees nor are we educated in physiotherapy, occupational therapy, education or any of other expertise’s that are required to manage the multiple disguises of Rett syndrome.
Just when you think everything is under control and you can finally breathe a sigh of relief, it raises its ugly head and rapidly curves your daughter spine right before your eyes. Right now, Elle is going through some significant challenges with the curvature of her spine. She is now wearing a back brace up to 22 hours a day. She also sees a chiropractor, osteopath, massage therapist and does regular stretching and core strengthening, with the hope of preventing her from needing to have major spine surgery in the future. But will this be enough – our constant worry – “have we done enough?”
Elle’s seizures, thankfully are controlled for the most part, however at times are so subtle, that if you are not paying attention to her, you would never know that she is having a seizure. But are those seizures? Or just what are called ‘Rett episodes’. How do we know?? To really know the difference, Elle would need to have to be hooked up to an EEG monitor or perhaps have them observed by a Neurologist – but you can’t plan the seizures or “episodes”, so we do our best with what we know.
This, however, is not meant to be a “poor Elle” or a “poor Lory, Kevin and Paige” post, this is simply meant to bring to light that Rett syndrome is always going to have an impact on Elle and us, and often when we least expect it. But we are not ever going to back down or crumble in our efforts against it. Elle is simply too important to us, her family and friends, and the entire community whom she has around her. Like everyone, we have our good days, and our bad days, moments that we don’t want to forget and moments that we don’t want to remember but can’t forget. Nonetheless all it takes is just a few minutes with Elle – talking to her, interacting with her, and being silly with her – to find strength. She is our strength. She is the reason that we will continue to fight and never give up. She helps us to do whatever we need to do for her, but also continues to motivate us on our quest to help all those individuals and families impacted by Rett syndrome.
As in previous years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C). On January 26, 2019, we will be hosting the 7th Annual Ref4Rett Event at the Brant Sports Complex in Paris. This year’s event will continue to feature two hockey games. The first game will feature an alumni game between the Paris Mounties alumni. The second game will be the last regular season game between the Paris Mounties and the Ayr Centennials. Along with the great hockey, there will be a silent auction. Our goal this year is to raise $30,000.00 for the Ontario Rett Syndrome Assocation (O.R.S.A.) and Rett syndrome research in Canada.
As we plan for our event, we are currently looking for donations, sponsors or silent auction items. If you or someone you know is interested, we have two different sponsorship options available. Silent Auction Items are also being accepted. Your sponsorship or donation of any amount will help us to realize our goal.
If you would like to support Ref4Rett and enjoy some good food, join us at the Knights of Columbus Charity Breakfast.
REF4RETT 