At the end of June Oliver could walk, talk, swallow, sit up, control his legs, control his arms and fingers, roll over, pull himself up, control his head, blow kisses, giggle, play with toys, tell us he loved us...
Now he cannot do a single one of those things. His retained skills include his ability to smile (thank God), he can still hear, and he can still see, but we're currently witnessing him lose his sight. To say it's been painful to watch him go through all of this would be an understatement of incredible proportions. It has been torture, that is really the only way to describe it.
His sight is starting to become affected, and we're seeing his eyes do very strange things. Darting back and forth, rolling back, pupils being either very dilated or not at all, regardless of light. He doesn't track you if you walk across the room or even move back and forth right in front of him. He doesn't track toys, he doesn't always blink when things are near his face and he probably should. He can't focus on things very far away and is starting to struggle with close up. I'll be holding him and he'll be looking away and I'll say "Hi baby, I love you, look at your Mama." And his eyes won't budge. I cry just thinking about it.
We don't know to what extent he can actually see, because he can't tell us and there is really no way to gauge. I just know that I don't want his whole world to go dark, since day one of his diagnosis it's been my biggest fear. I would give up my ability to see for the rest of my life if he could just retain his ability to see for his unfairly shortened life. How evil is this disease? Isn't it bad enough that it's taken away his ability to move, talk and eat? But his sight? It seems the cruelest of all. To not be able to see the faces of his Mommy and Daddy as we hold and comfort him? To not be able to see all the people and other things that he loves like Elmo, lions, dogs and his Daddy's silly dancing? It makes me sick to think about him becoming blind and being scared. Nothing is worse than him being scared. I feel physical pain at the thought. I feel helpless.
Scared, needing his Mommy and Daddy, trapped in a world of darkness, struggling to breathe, no idea what is happening to him. Sick. This disease is sick. And it all happened so fast.
Here are some pictures of Oliver from June...
And here are some pictures from Oliver in September