River is about a week old here. This was the day (actually hours before) he had a pulmonary hemmorhage. It was the first time he ever looked me in the eye. His Nana Kathy took this picture with her phone standing over my shoulder and I remember sobbing to her and Matt that River was looking at me and seeing me. It still hurts my heart to look at this picture... even though it remains one of my favorite pictures and memories ever.
So yesterday we saw an eye specialist at the U A B Center for Low Vision. River's occupational therapist recommended this doctor and I've been both dreading and anticipating it for months. When it comes to children with special needs there are rarely easy appointments. Most hold the potential to either make or break your day (week, month, year) if you let it. You just never know what a DR is going to tell you, what diagnosis is coming next. Even though River has had a little success in tracking objects during therapy and we've seen improvement in his eyes roaming I was still scared that we might go and be told that River can't see. Would that be the end of the world? No. Would we rally (just as we have with everything else) and move on? Yes. Still, I don't think anyone ever wants to hear their child is blind.
Let me back up and say that their is nothing wrong with River's eyes... on the inside and outside they are beautiful and without any problems/complications/issues. He has no optic nerve damage. But as it goes in children with brain injury... the problems lies in his brain getting a message to his eyes that he is seeing. River has CVI (cortical visual impairment) and that is a neurological visual disorder.
The DR we saw was probably the best we've ever seen when it comes to River's DR's. She told us that she would NOT say that River is blind, but he does not have good vision. She thinks his vision may be somewhere around 20/100. That's not something we can tell at this point. He is far sighted (typical of a child with brain injury like his) so she prescribed him glasses. She's unsure if they will help, but she says they definitely will not hurt. So given that she wasn't able to give us a lot of information on what River is/isn't seeing you may be wondering why I would say she is the best we've seen. Here's why: She is the best because she believes River's future is not defined by his present. She is the best because she believes he can get better. She was extremely encouraging and kind during the whole hour and half she spent with us (mostly just talking), but at the end of the appointment she looked at me and she said, "I'm sorry I wasn't able to give you more information, but at the end of the day it doesn't matter what I or any other doctor tell you. I have been doing this for 20 years now and I learned a long time ago not to say what a child will or won't do because I have seen my share of miracles." She then went on to tell us of the story of one of her favorite patients who doctor's said would never see, walk, or walk. He goes to school with her own children and she said the day that he walked for the first time the entire school cheered. Everyone loved him and everyone was invested in his care... they wanted to see him succeed. And he did. Kid's brains are so plastic that just because River has a lot of damage to the area of his brain that controls vision doesn't mean he can't see.... their brains rewire and his can use a totally different area to control vision. When you think about it's really amazing. She said River is on his own schedule... he's not walking yet, but he's working towards it and he can do it. Just like that he can catch up with his vision. I appreciate a doctor who realizes the potential of my son, who realizes there is Someone bigger than all of us, bigger than brain injury... and He can move any mountain.
So we wait with hope... and I'll keep dreaming of the moment I can share with my son when he looks in my eyes again and really sees his Mommy.
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