This is Benjamin Shively, 10yrs. born 3/30/95. He is a
sweetheart. We never thought anything was wrong with him
until the day the doctor heard a heart murmur at 6 month
old. 
Because he didn't gain any weight when we went
back one month later, we were sent for an Echo Cardiogram.
We were living in Pomona, CA and a Pediatric Cardiologist
from Glendale, CA read the test and sent us immediately to
Children's Hospital in Los Angeles. I packed toys and
stuff to keep Ben occupied not realizing the severity and
the length of our hospital stay. Each day his heart got
worse and he needed surgery. It was not until the surgeon
had opened Ben's heart did he know what he was dealing
with. Ben had a blocked Coronary artery! The surgeon said
the scar tissue look like that of Williams Syndrome and
sent samples to Genetics. We were in shock at all that was
happening in such a short time when we had no idea Ben was
suffering...we was such a happy baby! Seventeen days later
we brought Ben home from the hospital and it was like
starting all over with a new baby. Our lives took a new
path of therapies, challenges and two introvert parents now
coming out of their shell!! I think Ben's first word was
"HI".
Ben is very impulsive and a little obsessive...about lawn
mowers, construction equipment, drums, guitars, wanting to
go, go, go! He is in 4th grade this year and loves to be
around all of the people. He is fully included and is
pulled out for reading and math, he has speech, OT & PT
during school. He is quite a handful at home unless he is
watching videos or surfing the Web to look at drums.
Because his interests are big, he often wants something
that is not feasible and will totally explode with anger.
That is when I feel so helpless. How can I help reason
with someone who has no reasoning?
We would welcome anyone who want to chat or get together.
Kim Shively mom to Ben (10ws), Noah (7yrs), Lydia (5 yrs)
wife to Jonathan
KgraceShiv@verizon.net
