Despair

On the ride home I feel like one of the puddles on the ground, a collection of many little raindrops; cars splashing through and disturbing its peace.

I cry quietly because I do not want to upset anyone else in the car but I am secretly devastated. I wonder how many times can I possibly be completely devastated in one lifetime, and over almost the same thing: Keegan.

We were so excited about the Berkeley trip, and to find out what Keegan can see. Never did I expect to hear that he flat out doesn't see. The last time we went Keegan was 18 months old and it was such a positive experience: they did tests to see what his potential vision was and gave us all sorts of information.

That was not the experience we had this time around. First of all it was raining, which spoiled most of our plans so we were already disappointed. We were lost, walking around the campus at Berkeley for a half hour with no clue where we were going. After multiple phone calls I finally reached someone at the low vision clinic and stayed on the phone with her while we walked back to our car, loaded the kids up, and found the right building.

Keegan was soaked (we never expected to need the rain cover for his new stroller so we didn't have it with us) and my hair was a wreck but I was relieved we made it. I expected the appointment would fully make up for wandering in the rain, and then it didn't. We spent about 20 minutes in the little room, with the same women we saw four years ago. They each looked into Keegan's eyes and exchanged hushed words; one woman told me that Keegan is blind. He doesn't see. I can't remember exactly what she said because mostly everything was silent in my head for a good minute or so.

She asked me why we were even there, what his ophthalmologist said. She explained very bluntly that he doesn't see. She works only with children with low vision, and he doesn't respond to light, his optic nerves are very small and all twisted, and some other terms that essentially meant he doesn't see. He might have very little light perception and that's it. She asked me if I had any questions, I couldn't even form a coherent thought. We probably talked for about 5 minutes in which she told me not to even focus on vision and to switch tactics and focus on his other senses because there is no point wasting our time with vision. I told her we were expecting to see a neural-ophthalmologist and she made it seem like it was pointless, she also told us not to bother with glasses they won't do anything.

I remembered the nurse who told me not to get so excited about Keegan's seizures being under control because it never lasts long, and wondering if this woman was wrong too. My internal reaction is that she is wrong. I explained some of the things he does that made me think he can see some things and she dismissed it saying he must have used his hearing. I had to keep telling myself to hold it together, just a few more excruciating minutes. I didn't allow myself to even begin processing what happened until we were on the road back to my mom's house.

Watching the rain I wondered what it would be like not to see and how much I take that for granted, how much I take for granted period. If you know me, you know that I am not a negative person; I always look for something positive in any situation. Maybe you think it shouldn't be such a shock to hear that Keegan is blind since we were already under the impression that he was legally blind with a potential vision of 20/500.

I even thought – why is this so gut wrenching? Then I think about the stories of kids who can do much more with the little vision they have than anyone expected. I wondered what this means for Keegan now. Will he ever be able to learn to walk without any vision? He already has so much going against him with the brain abnormalities that make everything so difficult and he can't see?!

Then the knockout punch: I can't fix this. I am always fighting to make him normal, as normal as possible. I am always fighting to help him move forward developmentally. I try to make him appear as normal as possible. I would do anything; give ANYTHING for him to be normal. But he isn't, and without a miracle he will not be. I can't fix this with therapy or medication or anything within my means. That kills me! I don't like to entertain the thoughts but I wonder if it's my fault. The what if's flood my mind and my heart breaks all over again.

People say things all the time about having to care for him for his entire life, and I never think that far in advance. I always hoped that he was just going to be delayed, one, two, five years. I think one day he will catch up and it won't matter that he is five years behind. It is becoming blatantly obvious that my hope is not a reality; the alternative is overwhelming. I can't even imagine going on like this for years and years. So I wonder, do I just give up now? All of this fighting in hopes of helping Keegan progress with so little improvement. So much time and energy and I'm seriously running out of fire. Then I realize I need that fire rekindled, I need encouragement.

I love my friends and family but all they can do is sympathize. Even reading this cannot impress upon you the severity of my anguish, many just can't understand. My desire to attend the conference in Chicago is even stronger now. It isn't simply a want; I need this. I feel very strongly that I will gain more than just knowledge; I need fellowship with these families. I need to spend time with people who are in my position and I crave encouragement from those who are further down the road. So I guess this is just another time to adjust my sails. I have to focus on something else, work towards something positive and that will be the MAGIC convention. I still need a ton of help to keep pushing forward, and to focus on something positive instead of letting all of this sadness swallow me whole.