As I nurse Rebecca, she stares up at me with those beautiful blue eyes, and I stare back at her. I can’t help but think of the dreadful day when her gaze no longer meets mine. Time goes by so fast. Before I know it she will be 7 years old, and like with Reagan, I will look back and wonder where the time went. I can’t let these thoughts consume me. Rebecca is loving life. She does not know that she is deaf, she doesn’t know sound, and she also does not know that one day she may be blind. She is loved more than life itself, and she knows it. I need to enjoy these moments and be grateful for them. I am so lucky to have her. Of course there will be days like today, when a mailing from the Perkins School For The Blind makes it all too real. But there will be so many days of laughter and love, days of coloring, swinging, painting, dancing, sledding, reading, and fort building. There will be first steps, Christmas mornings, movie nights, “cuddle sessions” (as Reagan calls them lol), and toe nail painting. There are so many days ahead for me to look forward to and to be so thankful for. I am so hopeful for a cure, but if no cure is found, we will make it work. Rebecca will feel the sun on her face, the wind in her hair, and the sand beneath her feet. She will feel every ounce of the immeasurable amount of love that surrounds her, as she already does. We will overcome Usher Syndrome.
Usher Syndrome Registry
Its so important for anyone with usher syndrome to register so that they are in contact with the researchers who are working to cure this awful disease. If you or someone you know has Usher syndrome please register at the usher syndrome registry.
The Big DayDecember 15th, 2016
The big day is here.