On Wednesday December 21st our family was invited to an Usher Syndrome awareness event that was being sponsored by Arts for USH. The significance of the date was that it coincided with the winter solstice and occurred on the darkest day of the year. Not exactly sure how many people walked but I believe it was approximately 75-100, many of which carried flashlights from the Needham town hall to the VFW (approximately 3/4 of a mile). Our cousins Adam, Ashleigh and Noah joined us as well and we were all there to “shine a light on Usher Syndrome”.
Prior to the walk there was a gathering at the Needham town common. There were about 30 pictures on canvas displayed around the common, each of these pictures represented a person or persons with Usher Syndrome. One of those pictures was of Rebecca, Beth, and myself and although we were surrounded by so many people that were there to show their support, it was difficult to not feel alone once we came across her picture. That’s the bitter part of this, I hate that Rebecca is associated with this disease. I hate that one day we will need to explain to her that she will lose her sight. I hate that she will most likely feel worried and scared. I don’t want either of my kids to worry, but how can I convince her not to when facing something like this. The only thing we can do is to do everything we can to raise awareness about this disease.
The sweet part on the other hand is the community that we are now a part of. We have met many people who inspire us, people that are facing the challenge of vision loss and are overcoming it, moms and dads that are doing everything they can to beat this disease for their children and future generations of children. We are fortunate and grateful to be part of this community. Although this will be tough, with these folks by our side and us beside them we will definitely find a way to beat this