if we run back to 2007 I was your typical overachieving type A mother of a
two-year-old who was eight months pregnant and decided it was an ideal
time to tear down my house that was 1,200 square feet and
build a 3,000 square foot house
I'd watched a little bit too much HDTV at the time
sounded like a great plan moved out
moved into the smallest rental house we could find in our neighborhood
baby was born everything was perfect
house was coming along fine I was gonna go back to work
I mean I knew what I was doing I was an executive
I knew it was happening in life I was I had it going on and I moved
my son Tommy my 11 year old now well he'll be 11 on Monday
I moved Tommy from the bassinet to the changing table and his arms shot out and
his eyes moved to the side and I was like that was weird
he's just startled he's fine
put him into the bath he does it again and I was like what was that
so I called the pediatrician they're like check his temperature I'm like
yeah I did he doesn't have a fever check it again
I'm like he doesn't have a fever
they're like go to the ER so I was like okay whatever
so I went to the ER
dropped my son off at my friend's house my older son Mitchell
I said I'll be back in an hour I just I don't know what's going on
they just wants to go check on something at the ER
so we're checking in he does it again arms go out eyes go to the side
and the nurse who's taking checking us in says how long has your son been having seizures
I was like what that's not a seizure like it's the first time I'd ever even heard them
I was what's this lady talking about seizures are much more dramatic
I'd seen those on TV I knew what a seizure was
and next thing you know we were thrown into this world
and within two weeks my husband and I had seen four neurologists
we had spent the night for over overnight EEGs in two different hospitals
we'd had two MRIs and we'd had a cat scan okay I'm a little bit type A
and so all we had learned at the end of these two weeks was
that our son was born with a brain malformation he had something called focal cortical dysplasia
he had this thing called infantile spasms and he was taking
medication and it wasn't working that's all we knew so we're sitting out on the
front porch of our little rental house and I looked at my husband and we were
both were just shell-shocked I mean I knew how to handle things and I just
looked at him when I asked the question that everybody would ask just looked at
him I said so what kind of tile do you think we should put in the master bath
and we laughed so hard because prior to this happening those were the types of
conversations that we had on that front porch I don't know what do you think
about this color I mean it was just really put things in perspective and it
also set the tone for the journey that we were about to go on
so tommy was five months and we were struggling trying to get seizure control
we were having ten to a hundred seizures a day we are being faced with okay you want to do a
hemispherectomy which is you guys it's great to talk to an audience that
actually understands these terms and or we could try this thing called ACTH and
it sounded pretty scary I read about it online and people didn't react to it
well and so Thanksgiving 2007 we checked into the hospital that week and after
two injections Tommy's seizures stopped and ACTH gave us
20 months of seizure freedom and in those 20 months we had every type of
therapy you can imagine come to our house and help us and our little boy
found his voice and he was doing amazing I fixed it
we were good and then on August 4th 2009 the seizures came back so of course I
was going to go fix it so we worked through it they came back slowly and
after about four years we had to look at surgical options and Tommy was born with
a brain malformation so we knew that we were a surgical candidate so that was my
answer we're gonna go get surgery perfect so we reviewed three
different surgical centers we decided upon and surgeons we decide upon
Dr. Bingaman at the Cleveland Clinic in Ohio and we were getting ready to go there
and I was gonna make the reservation and my husband said we're not flying to Cleveland
excuse me I live in Sacramento by the way which is right here in
Northern California what do you mean he's like we're gonna drive
I'm like it's December he's like yeah we're gonna drive I'm like why
he's like I don't want to be that family that gets on an airplane to go have brain surgery
I'm like we are that family and he's like no we're not I'm like okay so we took the
most direct route to Cleveland we went through Wyoming to show the kids where
we got married up into South Dakota so that we could get another state on our
list up to Minnesota if you guys know your geography this is not the most
direct route and then we drove down from Minnesota we had New Year's there and
drove down from Minnesota to the Cleveland Clinic and we were there did
our pre-surgical evaluations and they said we don't know enough we're gonna do
the intercranial EEG and we're gonna see if we can really help this boy so
they went and they looked and we did the did the cranial EEG we're back in the
stayed in the hospital a while longer and the results were pretty
inconclusive they said you know we think we could
probably do it but we can't guarantee you're gonna have seizure freedom his
brain has to heal why don't you go back home so we drove back home and the
seizures got worse and we started going into status and I said you know this is
not fun so why don't we go back to Cleveland so we had a family wedding
that we had to be in I had to put on a guava chiffon dress at 43 and be a
bridesmaid which was great in Cancun and so of course we decided that we would
go to Cleveland via Cancun once again the most direct route and we went in there
and we had our our brain surgery and my parents met us and my older son Mitchell
was 10 at the time my parents came out my stepdad took
Mitchell to the Indians game so that he didn't have to you know stay with us in
the hospital as we fretted over the surgery and the surgery was a success in
that Tommy made it through the surgery was a success that they got some of the
malformation but it wasn't a guarantee and I mean nothing's a guarantee but
Dr. Bingaman wasn't fully confident that we were gonna be seizure free so we flew
back home and three days later Tommy had a seizure so once again David and I were
sitting there devastated and he asked the logical question that you would ask
in that situation and he looked at me and he goes I think we can get our
money back and it was at that moment I realized that I was focused on
completely the wrong thing I was focused on the destination I was focused on
fixing Tommy I was focused on surgery was gonna be my answer and the story I
just told you was actually about the journey and I was really fantastic because
when I think about Cleveland I don't think about the 13 nights I
spent in the hospital I think about the bald eagle we saw in Wyoming I think
about the Grand Tetons I think about our friends that we saw along the way
I think about the Indians game I think about all these other really fun
cool things that happened to our family because that's the journey and that's
all we have that's all we have is where we are right now and the journey we're on
so Tommy's gonna be his in April it'll be four years since he has
surgery we've had a VNS we don't have seizure control but I'm not trying to
fix him and don't misunderstand me trust me I want to scream from the top
of Mount Tam and say my kids seizure free I haven't given up on that hope but
I've decided to change my focus and not focus on fixing Tommy but focus on the
joy and the wonderful things about Tommy so wherever you guys are in your journey
because we're all in a different place with our journey think about enjoying the
moment because none of our lives are guaranteed you know no one knows what
their destination is and just and I see these people at these conferences that
are doing amazing things with epilepsy and as a
mom it gives me so much hope because Tommy's life is gonna be great and it's
gonna be Tommy's life and Tommy's journey and so that's what I've learned
so far and I'm still on it and maybe I'll see you guys in a year and maybe I
will be screaming from the top of Mount Tam I haven't given up hope but that's
where we are so wherever you are in your journey please try to remember to enjoy
it because it's all we have