My name is Pilar (pronounced: Pill - are). My husband David and
I are the proud parents of Patrick, Kate & Grace and we all
live with our dog Max in sunny San Diego, California. David is an
R.N. for the US Navy, and I am fortunate to be able to stay home
with the kids. Together, Cindy Rose and I co-founded FOCUS Families,
so during the days while my kids are in school I work as a volunteer
for FOCUS Families from my home office while Cindy looks after FOCUS
Families from her home in Gilbert, Arizona.
Patrick was born at 12:09 a.m. on August 5, 1989 after a long and
difficult delivery. He weighed in at 8lbs. 15oz. and was 21 ½
inches long. When all was said and done both Patrick and I looked
like we'd gone a few rounds with Mike Tyson -Patrick had a broken
clavicle (collar bone), two black eyes and a purple ring around
the tip top of his head and I had a broken coccyx's (tail bone)
and couldn't walk for 3 days. Because I'd had a fever during the
course of his labor and delivery, Patrick was quickly rushed to
the NICU, so they could keep an eye on him to make sure he didn't
get the infection they'd believed I'd had. Patrick never had the
infection thanks to a quick dose of antibiotics, but he ended up
staying in the NICU for 11 very long days. He stayed because the
doctors weren't sure why Patrick was so hypoglycemic and jaundiced.
The form of jaundice he had wouldn't respond to light treatment.
The doctors naively hoped the hypoglycemia and jaundice would resolve
itself, so after living the first eleven days of his life in the
hospital our baby boy was finally allowed to come home with us.
Today the standard for a newborn's first pediatric check-up is to
come 2 weeks after a baby is born; way back then (1989) newborns
didn't come back for their check-up until they were six weeks old..
When we arrived for Patrick's six week check-up it we learned that
he'd lost over three pounds and the jaundice was out of control.
Patrick was admitted back into the hospital and it was during that
stay that Patrick was diagnosed as having Septo Optic Dysplasia
(SOD). Patrick's optic nerves are underdeveloped -but he does have
functional vision- and he is on hormone replacement because of endocrine
deficiency. The thing that separates Patrick from the "classic"
diagnosis of SOD is that his Septum Pellucidum is intact. But his
diagnosis is still considered SOD.
When Patrick was first diagnosed as having SOD David and I were
told that we'd never meet another person with SOD because there
were only "60 known cases, past and present of people with
SOD." Where the doctors came up with this number still bewilders
me! That statement alone gave me the deepest feelings of isolation
I had ever felt and hope to never feel again. Because I was told
there were no other families for me to connect with I was left feeling
as though I'd never know what to expect from my son mentally, physically,
visually or medically.
Those first few years were really pretty tough, but to be quite
honest, they're a bit of a blur. David was deployed by the Navy
on 6 month sea voyages a few times, along with other several other
trips (trips that normally lasted 3 months) and I had another baby
(Kate). Unless I really give it some serious thought or am reminded
by someone of a particular incident I don't recall vividly all of
the individual trials and tribulations we went through. I look back
on those times as a learning process for all of us, and we've come
through it scarred but healed. A funny thing that I do remember
is that I never ever wanted to pick up the magazine "Parents"
-the articles seemed to me to be about trivial dribble that just
didn't apply to me and my life. To me it felt as if all of the stories
were about happy families who were overly worried about ear infections,
when to expect the next milestone or what preschool to enroll their
child in. During Patrick's first year of life I was worried about
over booking or missing therapy appointments, if he would ever walk,
and if he could see!
Today Patrick is a very happy teenager! He loves to laugh, read,
watch TV, watch any sport or sports related show (especially ESPN's
Sports Center) ride his bike (an oversized tricycle) play basketball,
and hang out with his sisters Kate & Grace. Patrick is in the
7th Grade at a "regular" Junior High School, but he is
enrolled in a special education classroom. Patrick reads large print
and braille and he excels in spelling and math. Science and Social
Studies are of little interest to him and if it was up to him he'd
love to live the rest of his days without another boring science
or social studies class!
If your child was just diagnosed as having SOD or ONH, you have
come to the right place for information, education and support!
FOCUS Families will help you with understanding all of the technical
terms and will support your in your quest for information. The individual
families that are the framework of FOCUS Families will also help
you through this very difficult time. We've all been "there"
and completely understand your sadness and loss. Please know that
in time you will be less worried, less stressed, the doctors appointments
will lessen in their frequency, and you won't continually test your
child's vision. Normalcy will come back into your lives.
Knowing the families here at FOCUS Families has been amazingly helpful
for my family and so many others. I can ask questions from the families
whose child is older than Patrick, and through my own experiences
I try to help the families whose child is younger than Patrick.
I hope that you will consider becoming a member of FOCUS Families
because you will be offered so much support and knowledge from all
of its members. Maybe someday you too will be able to give back
to another family who is in need of support. After all, isn't helping
each other what "it" is all about?
Pilar Hari firstname.lastname@example.org
P.S. Thanks for reading our story!