One of the biggest difficulties of raising special needs children is having to fight for them all the time--either with various systems or against other people's limited and limiting views. May we change the way our culture perceives these children. May we change public policy and education, for all children.
Someone said to me, "Maybe instead of advocacy, you should go back to art history." She said, "A friend of mine had a Down syndrome child and it took over her life; she disappeared." I believe her friend didn't vanish but was transformed. Sometimes you wake up and you have only one road in front of you and only you can walk it. What is the alternative--give up on your child? Sometimes transformation is the only choice.
Friends who are surprised by my new discipline of exercise and running ask if I'm training for something. I say, "No," but that's not true. I am not training for an athletic event. I am not training to fight the New York City Board of Education, although I will. I am not training to knock out a meaningful place in this world for my son
and other kids who are different, although I will do my damnedest.
I am not even in training for my own sanity, although sanity is a
I am training to be able to hold my whole self entirely still, a translucent speck in the infinite mirror of the Universe, and say, "Yes, God, I will." I am training to live the life I have been called to live, as well as I can: to transform. I pray that all parents of special needs children can find their way toward whatever transformation they may need.