This past week I noticed something and its really been bothering me
I am surprised I hadn't really thought too much about it before, but after being around other children all week it dawned on me.
I was laying in bed in the hotel, while everyone else was asleep (Lonnie and Daniel)
and I thought "wow, Daniel doesn't make much sound at all" compared to the other kids,
and I cried for a long time.
I cried because I will never hear Daniel speak. I might hear a word in his language every once in a blue moon. I will most likely never get to have a conversation with Daniel unless he is using his augmentative device. It's not that he doesn't form words, he doesn't even really babble too much. Some days he will, then it might be days again before he does.
When we are in between babbling days I wonder if he is sad. I wonder if he understands he can't talk. All this wondering makes me feel incredibly sad for him. Will he ever be able to verbalize to a girlfriend that he likes her? Will he ever be able to tell me he is scared and if so what of?
Daniel doesn't make the sounds that a normal child of 3 makes, nor does he make the sounds of a younger child very often. He can do it, I've heard him.
He watches my mouth when I talk, he does try to form the words, but his brain just can't send it to his mouth.
bilateral perisylvian polymicrogyria = SUCKY CRAP! This is what causes Daniel not to be able to speak, and no matter what therapy or how hard I pray or try, will I be able to fix the brain malformation. Why does he have it? Fluke? God playing a mean trick? there will never be an answer, but I will tell you it truly is heartbreaking because I know there is so much in this little boy that needs to be heard. I mean its crappy enough that his body doesn't work for him, but he also doesn't have a voice. How many people in his life are going to just ignore him because he can't be heard? Because they can't understand him. Because they feel he isn't worthy of anything because of his disability?
I get all bummed out about this when its quiet in the house, and then tomorrow will be better because I get to wake up and see this
and I know that I will always hear Daniel, and anyone that has a heart will be able to hear him too without him ever saying a word!