I WAS BORN IN CHICAGO (FIFTH CHILD).  MY  SPINA  BIFIDA IS AT MY SACRUM.  I WAS ABLE SIT UP AT ONE YEAR AND WALK AT TWO.  AT THREE THEY CLOSED THE GRAPEFRUIT SIZED BUMP AT CHILDREN'S MEMORIAL HOSPITAL.  IN THOSE DAYS PARENTS COULD ONLY VISIT ON SUNDAY.  MY FIRST MEMORY IS THE NURSE MAKING THE BED.

 

THEY DIDN'T KNOW WHERE TO SEND ME TO SCHOOL SINCE THE LOCAL SCHOOL WAS ONE MILE AWAY AND IN THOSE DAYS WE ONLY HAD ONE CAR PLUS MY MOM DIDN'T DRIVE.  I WENT TO LUTHER BURBANK SCHOOL FOR THE HANDICAPPED.  THE THING I AM MOST THANKFUL FOR IS THAT WHEN YOU GO TO A SCHOOL LIKE THAT THERE IS ALWAYS SOMEONE WORSE OFF THEN YOU.  I WAS PROBABLY THE SECOND OR THIRD HEALTHIEST KID THERE.  WHEN I AM DOWN I REMEMBER "I CAN WALK". 

 

I HAD NO CONTROL OF MY BLADDER SO AT 21 I HAD MY URETHERS (ALL THREE) DIVERTED AND NOW WEAR A BAG.  IT WAS ONE OF THE BEST THINGS THAT HAPPENED TO ME. I DON'T THINK I WOULD HAVE MARRIED HAD IT NOT BEEN FOR THE SURGERY.  ABOUT THAT TIME I HAD MY RIGHT LEG ATROPHY (PROBABLY TETHERED CORD) BUT AT THAT TIME IT WAS TO RISKY TO OPERATE.  ABOUT TEN YEARS AGO I HAD THE TETHERED CORD RELEASED AND A SHUNT PUT IN MY SPINAL CORD.

 

THE GREAT NEWS IS I WORK FULL-TIME AS A MEDICAL TECHNOLOGIST.  I LOVE TO DO ART FOR MY DAUGHTER'S CLASSROOM.  I MADE A 9 X 15 MURAL OF AFRICA AND A GIRAFFE THAT IS 9 FOOT AT THE SHOULDER.  MY DAUGHTER IS A KINDERGARTEN TEACHER WITH ONE CHILD.  MY OLDEST SON IS LIVING IN NEW HAVEN, CT AFTER GRADUATING FROM YALE.  MY YOUNGEST IS CURRENTLY IN SAN DIEGO, CA TRYING TO FIND OUT WHERE TO GO NEXT.

 

AT THE TIME OF MY FIRST SURGERY THEY SAID I WOULD ONLY LIVE TO 12 WITHOUT IT.  I HAD 50% CHANCE OF SURVIVING THE SURGERY. 

 

MY MOM THOUGHT I WAS A MIRACLE.  I WAS VERY LUCK TO HAVE PARENTS AND SIBLINGS THAT TREATED ME VERY NORMALLY.  YOUR SON SOUNDS LUCKY TO HAVE YOU TOO.  I HOPE THE STORY OF MY JOURNEY HELPS YOU AND YOUR SON IN A SMALL WAY.

 

SUSAN

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