Poem

I have seen this poem circulated a few times among my online Rett community and it touches my heart every single time.  It was written by Kathy Hunter, Rett Mom and founder of what is now IRSA and is now IRSF (International Rett Syndrome Foundation).


           Before I was a special parent.
           I thought RETT SYNDROME was something you got from
           Watching too many re-runs of Gone with The Wind
           That is, after you recovered from Scarlett Fever
           Before I was a special parent.
           PT meant part-time
           OT meant overtime
           BRACES were something you wore on your teeth.
           And a WIDE GAIT was attached to my fence

           Before I was a special parent.
           I actually had a savings account
           I didn't know that I should have invested heavily
           In Scott paper towels, Attends, Velcro and Applesauce

           Before I was a special parent.
           RIGIDITY was my anal-retentive boss
           SELF-INJURIOIUS BEHAVIOR was what I did on a night at the casino
           MOOD SWINGS came only with PMS
           And VALIUM was used by high strung socialites

           Before I was a special parent.
           I thought BUTTONS went on your blouse, not your belly
           GENES were labeled Levi or Guess
           And MUTATIONS were confined to the Incredible Hulk

           Before I was a special parent.
           I thought the IRSA was the IRS Association
           HANDWRINGING was what you did after an audit
           SEIZURE was what they did when you failed
           And RESIDENTIAL PLACEMENT was a jail term

           Before I was a special parent.
           STATUS was something you earned, not dreaded
           And when you got it, MOBILITY was usually upward
           A FINE MOTOR ACTIVITY was taking the Chevy thru the car wash
           And a GROSS MOTOR MOVEMENT was the universal one-finger salute

           Before I was a special parent.
           VACANT SPELLS were related to real estate
           SPASTICITY was a good Jerry Lewis movie
           The IDEA was just a bright little thought
           And GUILT came from something I did, not from something I didn't do

           Before I was a special parent.
           BALANCE referred to my checkbook
           CIRCULATION was about my hometown newspaper
           HYPERVENTILATION was limited to Rover's greeting
           And CURVATURE was very sexy

           Before I was a special parent.
           COMMUNICATION was about saying all the right things
           IEP was pronounced IPE
           INCLUSION meant tax added
           And IMPACTION was a speedway crash

           Before I was a special parent.
           My other children were called kids, Not SIBLINGS
           They played together, not INTERACTED
           And my husband's 3 most important words before drifting off to sleep were
           I Love You Instead of DID SHE POOP?

           Before I was a special parent.
           I thought shoes with VELCRO were for lazy people
           ADAPT meant telling someone to get over it already
           And ASPIRATION meant ambition.

           BUT ALSO

           Before I was a special parent.

           I didn't know that SORROW never leaves you where it found you
           I didn't know that such unbridled JOY could come from heartbreak

           I didn't know that my child would be my TEACHER

           I didn't know the meaning of UNCONDITIONAL LOVE

           I didn't realize that the little stuff is really THE BIG STUFF

           I didn't know how well someone could COMMUNICATE without words

           I didn't know that when God sizes us up, he measures the HEART, not the head.

           I didn't know that milestones are not as important as SMILESTONES

           I didn't know that my child would TOUCH the world not from what she has done, but from what she cannot do

           I didn't know the POWER of her powerlessness.

           I didn't know that I had so much to learn.

           by Kathy Hunter
           Copyright 2005