Not Just a River in Egypt

The woman who led last week's Down syndrome New Parent Support Network training session has a 27-year-old daughter with Down syndrome. After we discussed the states of grieving parents experience upon learning that their babies have Down syndrome, she shared her family's stories of Denial.

Her story was funny, but her husband's story really struck me. He said, "Our daughter is going to be the Helen Keller of Down syndrome."

Ah hah. Click moment. This confirmed what I had been suspecting – I am still in denial. So far, though, Ellie has been cooperating amazingly well. I am going to continue on in my little cocoon of denial until I can't anymore. It's comfortable here and it blunts the hard edges of the world outside.

I figure that either I'll lose the cocoon one little piece at a time, gently and gradually, or else Ellie really will be the Helen Keller of Down syndrome. In that case, it will turn out that I haven't been living in a cocoon of denial, but rather allowing my denial to carry me to a place where I could confidently set high expectations for Ellie, encouraging her to become all that she really can become.