It is pretty high up on my list of most difficult things in life. It breaks my heart daily. It stinks. It is hard in so many ways.
IT is not being able to talk with my seven-year-old son. Oh, I can talk to him. I can talk at him. But I can't talk with him.
Sometimes he talks to me with his eyes. They are trying to tell me everything. Sometimes they do. Like when he's happy. Or when he's sad. Or when he is loving me. But they can't tell me what he's thinking. They can't tell me where it hurts or exactly what he wants.
Sometimes his lips move with no sound and it looks like he is forming words. But try as I might, I usually can't make out a single one. It hurts to know he is trying to tell me something and I can't understand.
Sometimes he squeals, or says "Daddy, daddy, daddy" over and over, or says "tatatatatatatatatatatata". I wish I knew what it meant beyond being excited or upset.
Is it because he has autism? Or because they removed the speech portion of his brain at fifteen-months-old? Did the speech not properly re-map to the other side of his brain? Is it because of epilepsy causing damage to his brain? Or is it because of the benign tumors in his brain caused by Tuberous Sclerosis? Only God knows. Only time will tell.....or won't.
All I know is that when I look deep into his eyes and he gives me a huge toothless grin, my heart melts into a puddle. I love this boy. And that makes it all worth it.
With love and heartache,
Joel's Mom
