Please don’t hurt my baby.
This is Aiden. He is my youngest son. He is the most naturally happy of my 5 children. He also has a genetic disorder called Noonan’s Syndrome.
I share this with you because, as a result of his disorder, he has been enrolled in a program funded by the State called Baby Watch. Amazing program. From the time he was 3 months old, professional women came to our home and taught us how to teach him. When we would get frustrated that he still wouldn’t eat, terrified that if he didn’t, he would need a feeding tube, they would teach us, hold our hands, show us the way. When he was 2 years old and still hadn’t said Mama, they helped. “Lips together. Ma . . . ma . . . ma. You can do it Aiden.” So, when a respresentative from Baby Watch called me this week to ask if I would testify before the legislative committee on health and human services, the same committee that is considering cutting the funding for Baby Watch, I said “yes.”
I have never been a part of the process before. I’ve always stood safely on the sidelines, reporting on other people’s tragedy, other people’s decisions. But not this week. This week I waited in a crammed hearing room with a hundred other people, some disabled, some parents with children who were disabled, some advocates for the disabled, all waiting hour after hour for their turn to speak.
The committee knew it had more people there than it had time to hear, but it tried to hear us all. Two minutes. That’s how long we had. Each person walked, or wheeled, up to the microphone. Some held crumpled papers with their life stories carefully written the night before. They were nervous. I was nervous. Whether they were mid-sentence or mid-tear, when the two minutes were up, they had to go. I understand the pragmatism. They had to move us along. But the pain.
The pain of watching us all, one by one, come to the front to beg. “Please don’t hurt my child.”
“Please don’t hurt me.”
“I can’t function without my assistance. Please don’t hurt me.”
It was one of the most humiliating events of my life. How could we put these people through this? I know the budget realities. I understand so many thousands are worthy for so many different reasons, but if we can’t help these most helpless among us, who are we? Is it purely a numbers game? “Well, there are fewer of them than the rest of us, so we should use the money to help the most people.” Is that a moral argument? Which man with polio should we sentence to death by neglect? Which child with disabilities should we not help develop his brain – when we could – if we could afford to?
I know we need to help each other, that the State is not the answer to all of the world’s problems. In a perfect world, we would all step up to meet every need of our brother. But in this imperfect world we live in, who are we if we do not help the most vulnerable among us? How can we enjoy the benefits we’ll receive with the money taken from these least of our brothers?
I am admitting my bias. My child benefits. My precious Aiden is learning and growing in the Baby Watch program. I thank God for the teachers and therapists in that program. And I am humbled by the process that makes me go to the State to beg.
Please don’t hurt my baby.