Saturday, April 10, 2010

When Your Baby Has Birth Defects

For 16 years I have been a guest speaker in the Human Growth & Development class at Waldorf College. Each year, the faculty member assigned to the course invites me to share what it is like to be the mother of a child born with physical and intellectual disabilities.

I always consider the invitation an honor, a privilege and a responsibility.

The class, which occurs every semester as part of the college's education curriculum, is largely comprised of men and women who want to be educators one day. Chances are great that they will encounter a student - an entire family even - whose life has been shaped, in part, by chronic disabilities. If I can, through the recounting of our family's story, introduce them to the emotional, spiritual, financial and physical ramifications of forever living through such a perfect personal storm, then they might be better able to connect with others in a meaningful, productive way.

My goal is to instill a measure of empathy and understanding that can help them meet the demands of their future jobs to the best of their abilities.

Stross accompanied me to the class the first time I spoke at the invitation of Prof. Marcia Trystad. He sat on the lecture table, happily playing with toys and delightfully distracting students with his infectious smile. He was oblivious to the words I shared and what they meant about our life together. Stross continued to accompany me to the class each semester for the next few years, playing off to the side of the room or sitting in the back with Mark.

Now he is taking college classes - one per semester - himself. And he continues to keep track of the days I go to speak to the class. With excitement and eagerness in his voice, he asks, "Are you going to talk about me again?" (For Stross, that is affirmation that he is famous.) "Are you gonna tell them everything?" His questions, and the joyful tone in which he asks them, serve as permission for me to vulnerably share details about his life - actually his and mine together - trusting the audience will respect what is shared.

To Stross, the details of his life make for wonderful storytelling. It is about him, after all. And life - his life - is all good stuff.

I love that about him; I treasure him.

I treasure the life - the story - our family has been given to share.

Involuntary Joy (book website)

This vlog is but a compilation of brief clips, letting you see what such a class period is like. A lot has stayed the same in the past 16 years, but each time is different. I continue to trust it is worth the hour or more of renewed pain that accompanies remembrance.

Please enjoy. Please appreciate. Please respect the story you hear.


Note: I have spoken to many other audiences, tailoring the message for the audience's needs. The groups have been comprised of educators (of all variations), wellness students, education students, high school students, parents of children with disabilities, friends and family of parents of children with disabilities, church members, and caretakers of persons who have disabilities. I still want a chance to talk to medical professionals - doctors and nurses. They figure as such a dominant part of the stories that belong to persons with disabilities. I would be deeply honored to share what that has meant to us - the good, the not-so-good, the hopeful, the confusing. I'll let you know when that finally happens. I'm counting on the fact that - eventually - it will.


KaKi said...

Thank you for always being so transparent and vulnerable. Your willingness to share with others is an inspiration!

P.S. I love your new blog look!!!

Joy said...

Thanks, KaKi. I appreciate your encouragement - both about the vlog and the blog's new look.