never say never
i'll never forget looking over jayme's shoulderlate one night
while gavin was sleeping in his crib
we read about
this terrible birth defect
our son might have
we'd been told earlier that day
x-rays showed a problem with his head
surely this was a mistake
we were in shock
the doctors said
his brain might not have enough room to grow
down the line
possible brain damage
deformity
we looked the term they used up on the internet
it was called
craniosynostosis
it refers to the early closing
of one or more of the sutures of an infant's head
the skull is composed of bones
which are separated by sutures
as an infant's brain grows
open sutures allow the skull to expand
and develop to a normal head shape
if one or more of the sutures has closed early
the skull expands in the direction of the open sutures
the result is an abnormal head shape
and in some cases
increased pressure on the growing brain
leading to mental impairment
jayme found an online forum where parents recounted stories
of their babies' operations
incisions made from ear to ear
to cut out the bone that had fused
in order to let it "hopefully" re-grow properly
surely there was an answer other than operating on our baby
turns out there wasn't...
that was the only way
horror brought to life
not a single day goes by
that i don't feel lucky that gavie is with us
the fear of something else happening to him
will never go away
this is instilled in all parents anyway
maybe amplified a bit in jayme and i
because of what we've already been through
i started this song on october 11
2003
my son was two months old
i have only the slightest recollection of its beginnings
at the time
all i had was the "never say never...never say no" bit
exactly one month later
in fact
to the day
on november 11
gavin underwent surgery at children's medical
we had to put our trust in those doctors
trust that they would take care of our baby boy
they did...
i am forever indebted to them
i finished "never say never" shortly after that
the missing pieces fell into place
if almost by magic
posted by salim nourallah at 12:45 AM
3 Comments:
Hi! I got a 'google alert' about your site because you mentioned craniosynostosis, so dropped by to check it out. I hope that things are going well with your son now. It's a lot to go through, mentally for us, physically for them, but somehow the love overshadows all of it. My oldest son was born with Pfeiffer Syndrome, which is one of the syndromic-forms of craniosynostosis. He had one of the 'worst-case' skulls (called "cloverleaf skull", all sutures closed at birth), but 14 years and 27 operations later, he is doing great! From the sound of it, you guys won't have to go through anywhere near that level of medical intervention, though. My web-page link is to a site I created about my son, in case you would like to read it. There are some good links for different support groups on the links page, in the event you are interested in those, too. Have a good day...
Salim, I remember back when you guys had first found out about it and also remember the day of the surgery. You were all in our thoughts, what a terrible thing to go through.
There's nothing like the protective instinct we have for our children, it's a helpless and horrible feeling to know they are hurting or in danger.
I'm glad things have gotten better and allowed Gavin a normal childhood.
dw
You and Jayme are very lucky. Sometimes it's over before you even know, and they're gone, and there is nothing you can do about it. It's over. It's all over.
l,
r
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