Last week, when I came to school to pick him up, one of his teachers came running over to tell me that he said “Evey” as clear as a bell. Evey is a five year old girl who was Jacob’s first friend. Apparently Evey was asking him to say her name, even helping him close his lips with her hand like she sees the Speech Therapists do. And he said it. The next day, with some prodding from one of his teachers, he said her name, “Ahuva”, also very clearly.
When I hear and see things like that, it reinforces to me how much is going on inside Jacob’s head. There are so many things he wants to say and do but has difficulty with the execution. That’s why we are trying so hard to find something, some way, to help him express himself, to move and to play the way he wants to, not the way we think he wants.
It’s hard to believe that after we’ve come so far, our biggest hurdle is doctors who are too afraid to help us, too afraid to learn about PMD and not even willing to explore the potential treatment we have waiting for him. We don’t expect anyone to be comfortable with trying an experimental drug on a four year old child. In fact, we shouldn’t feel comfortable about any child with such a debilitating disease. We’re not comfortable at all. But we’ve done our homework, we are not being reckless. We are more afraid of not doing anything and letting this awful disease progress down its natural course than we are of trying to help our son. Our son, the one with the best laugh you’ve ever heard and the biggest smile you’ve ever seen.