I was born with a rare congenital condition. The docs thought for sure I would die or be a vegetable, so they wanted to put me away in an institution. Forget about this baby, you have a healthy one, you can have another healthy one. But my parents would have none of it, taking me home, not knowing what the future would hold.
I don't know which is worse, living with a disability or having a child with one. Being a parent is the most challenging job in the world; adding a disability compounds it. Add to that the constant grieving that a parent experiences at each milestone that a child is supposed to experience, that everyone takes for granted: walking, talking, school, marriage, children, career. I grieved these things too. Of course I can walk and talk, but marriage and children? That's just not in the cards for me. It is not what I wanted, but what I have accepted as my reality. But there are still times that I rail at God, "why did you create me this way?"
There are no easy answers. God is not punishing my parents, God did not deem them "special enough" to bless them with me. Sometimes life just happens. And in that happening, God still wants to use it for good.
So I created an online support group for those with my condition, and a website for those having questions about it.
I'm not saying God didn't create me this way for a reason. I believe there is a reason for everything, that every life has a purpose. But when people ask why does God allow this? I feel at a loss for an answer. For I know that any answer I give will not be enough. Sometimes all I can do is listen, and pray.
I think that is what people want. They want to be heard. They want to know that their feelings are valid. They want to know that their feelings matter. They want to know their lives matter. And they do. All of it. All of it matters, to God, and to all of us.