Time changes everything, sometimes more quickly than we’d like. When you know what’s coming, you should be prepared for it, right? The time table we were given just doesn’t make sense, it wasn’t accurate. In the beginning, when we were absorbing information as fast as we possibly could, we held onto every word that every doctor spoke. But doctors can be wrong, after all, they are only human like the rest of us. Part of having a child with a rare disease is realizing that sometimes, you might know a thing or two that the doctors haven’t figured out yet. One thing we have learned is that Usher Syndrome affects everyone differently, even within each sub-type. Everyone with Rebecca’s sub-type, which is 1B, they all seem to have been given the same magic number. Ten. Ten years until we notice a difference, until SHE notices a difference. Ten years until we really need to worry. Ten years until time changes everything.
While sitting in the living room with Rebecca just the other night she said, “it’s too dark in here mommy, I can’t see you”, but the lights were on. While reading her a book just recently I pointed to a dog that I was reading about and she said, “I can’t see it”. One night after putting Rebecca to bed with her usual night light on, and the lights on in the hallway with her bedroom door open, I said goodnight and left the room. She came to the door screaming, “it’s too dark in here! I’m scared! I’m scared!”. Our house is becoming a lot brighter. Lights are being left on that never had to be before. Rebecca now sleeps with her bedroom lights fully on. We are hearing more and more, “it’s too dark in here”, and we provide more light. What happens when more light is not enough?
One of the many cruel things I have learned about Usher Syndrome is that there can also, believe it or not, be too much light. On bright sunny days Rebecca jerks her head to the side when I open her car door and says, “it’s too bright!”. So we put sunglasses on her, and make it darker. We adjust, we are constantly adjusting, as is she. When transitioning from outside to inside, Rebecca has learned to run her fingers along the wall to guide her until her eyes adjust. She is one smart girl.
We have another ophthalmology appointment next week, I don’t think it’s going to go well, but these appointments usually don’t. I know what to expect now. I have grown used to hearing Rebecca say, “it’s too dark”, or, “I can’t see that”. I don’t think Jake has. We handle things in different ways and at different times. Jake is at work all day, he doesn’t hear what I hear or see what I see, not as often any ways. I see it coming in the distance, and Jake get smacked in the face with it. Jake works hard every day so that I can be home to bring Rebecca to and from school, and to all of her appointments. I am so lucky to be able to do this.
But while time changes everything, there is one constant that does not change. Rebecca is HAPPY, and that’s all that really matters, right? Rebecca is always laughing and being her silly self. We don’t want her to be scared, we don’t want her to be worried, we don’t want her to be afraid, we don’t want her world to go dark……but it won’t. There is too much light inside of her for that to ever happen.