February 23, 2010 at 7:30 in the morning, Kaleb and I waited in the lobby of our eye doctor's office for what we thought was going to be a routine eye exam. I remember it as if it were yesterday. At this time, Kaleb couldn't sit on his own but he still wiggled around and held his head up so the doctor had me sit in the big, black, uncomfortable chair with a squirming Kaleb in my lap. He turned the lights off and chased his head around trying to see in his eyes, he tried getting his attention with some strange looking "toys", which I didn't think worked but I'm not the doctor. He turned the light back on and told me they were going to dialate his pupils and then he'd examine him further. So, the nurse put the drops into a now screaming baby's eyes and sent us back to the waiting room. I tried to feed him to comfort him, but he wasn't happy.
About 15 minutes later, we went back to sit in the uncomfortable chair, in the dark room for what felt like an eternity as the doctor looked into his eyes. I thought it was taking so long because Kaleb didn't want to cooperate and now I think it was because the doctor wanted to be sure of what he was looking at. When he was finished he turned the lights back on and looked at me, something had changed, he said he was going to write his notes and then he'd talk to me about what he saw.
When he was finished writing, he looked back at me and said that what he saw would help our neurologist make a diagnosis and he would call him today. He clearly didn't want to tell me what he saw and all I could say was "is it bad", and he said "yes, it can be". I think he threw in the "it can be" to try and make me feel better. He didn't want to be the one to give me such devastating news and I would imagine he wanted to be certain. Then he asked me if I had ever heard of Tay-Sachs and I told him I did remember reading about it, but I didn't remember anything about it - and he didn't explain any further, thankfully - I would have never made it home. (Now I know I didn't remember much about it because what I had read said it was predominately found in those of Jewish descent and that's neither one of us, so I dismissed it.)
I left his office full of fear, but still not thinking that what he saw was going to be terminal. At the very worst I was thinking he may be blind. I strapped Kaleb in his car seat and he cried the entire 30 minute ride home, it's like he knew what we were about to learn. I called my husband on the way home and he said he'd look up Tay-Sachs and call me back. He called me back right as we got in the door, so I hadn't had a chance to look myself and he told me in a very somber voice, "we don't want that" then he said he was coming home.
I layed Kaleb down for a nap and turned to the computer ~ I haven't stopped crying since. The things that stood out among all of those words, were ALWAYS FATAL, NO CURE, and LIFE EXPECTANCY IS BETWEEN 3-4 YEARS OF AGE. Kaleb was already half way to his third birthday, he was almost 17 months old when, on March 19th, we got the call to tell us that he had Sandhoff's Disease, a more rare form of Tay-Sachs, talk about being kicked when you are down. I remember reading that a child with Sandhoff's disease didn't live as long as the child with Tay-Sachs. What I would come to find out later is that it doesn't matter if it's Tay-Sachs or Sandhoff's, nobody has a crystal ball and can say how long he will live - and the Tay-Sach's child doesn't always live to be older than the Sandhoff's child - they are all taken away WAY too soon.
A lot has changed in this past year, I still cry a lot, maybe not EVERY day now, and Kaleb is different too, the baby who laughed and played on the floor, now manages a smirk for us once in awhile, but can no longer move or see. He sleeps a lot and stares off toward Heaven, I wonder what he’s thinking, I wonder if he can see all the friends that are waiting for him there. Because he is so special, I am sure that he has more than one guardian angel, in fact I think he has a lot of them... But, they are going to have to wait a to play with him, we still need him here.