Today is the 9th 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. We feel it important to share our experience and journey navigating not just life, but life with Rett Syndrome, as we continue to feel that it is a part of our mission to be a voice for Rett Syndrome awareness.
It’s interesting because as we sat down to write this post, we realized that this past year has just been an extension of the previous year, and although there is some hope with the roll out of vaccines, there is still so much uncertainty and so many challenges that people are facing.
As parents of a special needs child, we find that we often sit in silence with our worry. Silence because nobody wants to hear about our issues. Silence as most people don’t really understand what it’s like to parent a child who’s not the same as other children. Silence because sometimes when the veneer cracks and you feel safe enough to share some worries, the response is “well it could be worse “or “at least you/she got……” All well intentioned, but the reality of it is some days are really bad, and some days it’s not so easy to be silent and on those days the silence can feel like it crushes every ounce of our being.
Let’s share one example of a silent worry we’ve been keeping. As children get older typically, they develop more independence and freedom. Hanging with friends, some time on their own at home, maybe even getting themselves lunch or a snack if necessary, and even part-time jobs. For us, this is not our experience. There is no increased independence, without planning; there are no “breaks” or downtime for us as parents. And in fact, as she grows and becomes physically bigger, the physical toll on us is increased. Her wants and needs are bigger, and it’s no longer possible to just pick her up and move her.
As we look towards Elle’s transition to high school for next year, the worry for us as parents is indescribable. Not because there won’t be staff who can care for her, but because they don’t know Elle the way that her current educational team do. She will move from a school of hundreds of kids to a school with thousands of kids. And unlike other children who can express worry and concern, she is not able to. So as parents, it is our job to try to anticipate the challenges she may face, be prepared and ready to react. The emotional toll of this on-going heightened anticipation ever present.
We want to be really clear; we completely recognize that everyone has their own journey. We know that this pandemic has caused an increase in our silence, but we also recognize that everyone has their own struggles and that everyone has been impacted in different ways. So, our post today is about breaking the silence, and to be a voice for and stand together with other parents on a similar journey. For the record, we are not complaining nor are we looking for pity, we just think it is important to raise an understanding for what is our journey.
As you know, over the last 10 years we have received so much support from Todd Wood and the Paris Mounties (OHA Jr.C), who have helped to make Ref4Rett such a success. Unfortunately, due to Covid-19 and to ensure the safety of our community, we have had to once again make the very difficult decision to cancel what would have been the 10th Annual Ref4Rett event. But rest assured that we remain true in our passion to raise awareness and funds for Rett Syndrome research and hope to be back with an event in 2023!