Over the past year, and a bit longer, I was involved in the production of a play entitled “Fierce Love.”  It started with 6 moms of children with cerebral palsy (me included) participating in a 10 week writing workshop that culminated in our stories being turned into theater.  We were involved in every aspect:  we helped audition the actors, were at every rehearsal (constantly writing and rewriting), and baring our souls for all the world to see.

As the mother of a 23 year old daughter with CP, I have worn many hats since she was first diagnosed at four months of age:  physical therapist, occupational therapist, speech therapist, advocate, lawyer, augmentative communication specialist, and educator….My greatest desire has been to educate the world about disability.  I didn’t even know what cerebral palsy was when my daughter was born.  I know how easy it is to be ignorant about disability.

Even the term is different to me today – everything about my life is different from parenting my daughter with the kind of love “not for the faint of heart.”  Repeatedly, people would say to me “I could never do what you’re doing.”  !  Really?  So if your child was born with CP, you’d just walk away?  No, of course not.  Were their comments meant to make me feel “special”?  Forgive me, I digress.  Easy to do on this subject.

What I started to say is:  there are just so many differences people are born with.  I long for the day we can do away with the word “dis-ability”.  My friend Patty, another mom on this path, told me years ago that when we lived in caves, every person who was “different” was a potential threat.  If they weren’t from our tribe, they may want to kill us.  We carry this in our lizard brain, or so it seems.  Wouldn’t it be great if we didn’t fear differences, at all?   I long for a world where every body is valued, everyone is treasured, everyone is safe and has enough.

And now I come back to Fierce Love:  this play was the most powerful teaching tool I’ve encountered since my daughter was diagnosed.  The power of story telling is not new.  Stories bring us together.  Stories move us beyond our differences.  Stories go straight to the heart.  Fierce Love was one more gift my daughter has brought into my life.  Sometimes it still feels like too much, and my fear of her future may never be abated — but the gifts outweigh the difficulties.

I’ve learned that there are great gifts that come wrapped up as tragedies.

Us moms wrote and wrote:  first about the hard-hitting diagnoses; the about the encounters with strangers in stores who ask what’s wrong with our child; and about the absolute acceptance we gathered about our children, exactly as they are.  We had great directors who helped us use a lot of humor amidst the sadness — the joy and triumphs.

I was “the producer” of the play in many ways:  raising production funds, finding the mom writers, and hiring a videographer to film the live performance so that we could have it memorialized.  Now I’m in the process of having the script published.  The complete 2 hour performance is on DVD and is available for only $10 from this website: http://www.acommunityforeveryone/news (you have to scroll down to find it, but it’s there).

 

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