I remember the day it happened, it was almost
overnight. I was ready, I still have no idea why but I was instantly
ready. Paul and I talked about it and he was just as ready, but I
wasn’t prepared for an instant pregnancy. I thought we’d have a year
or two of trying and getting used to the idea that we would soon be
a family. “What did I get myself into?” “I’m not ready for this,
I’ve jumped the gun.” Instant panic has set in. I hadn’t even told
my parents Paul and I were trying. So the day after my 30th Birthday
I head to my parents to tell them that I’m pregnant. Moments later,
my father tells me he has prostate cancer. My fears and worries
about being pregnant are gone.
Being a grandfather gave my father hope. He got
to watch my belly grow, feel the baby Kick and move. My pregnancy
was beautiful. I never felt better, emotionally, physically or
spiritually. I felt unconditionally beautiful for the first time in
my life. I loved being pregnant, and then on October 17th 2002, I
loved being a mom. All of Paul’s and my family were there waiting
hopefully for wonderful news. All of a sudden our parents were first
time grandparents. Clae instantly changed everyone’s life.
Clae was born with a red mark over his nose, and
between his eyes. Originally we thought it was just some bruising
during labor, then a stork bite, and finally when no fading was
noticed at his 2 month check up our Dr. told us it was probably a
Port wine stain. Because of it’s placement we should get him checked
for Sturge Webber Syndrome. Instantly I go home and start
researching PWS and SWS on the internet. Oh, the overwhelmingly
scary information you can find on the internet is enough to make any
parent, let alone a first time parent a nervous wreck. I became
obsessed with finding out as much information as possible. My
Doctors were great though. They pretty much told me right away that
they really didn’t know anything about SWS and very little about PWS.
I was given so many appointments with specialists at the children’s
hospital that after awhile I felt I could drive there (45 min. away)
Clae’s first dermatologist told me to start
putting make-up on him because nothing could be done to help. Wow
make-up on a baby. A baby boy at that. I just couldn’t do it. No
way. Paul and I discussed what would be worse for him growing up.
Telling friends about something he was born with or trying to
explain away makeup on his face? That’s when I joined the support
group from birthmarks.com. They helped me through many difficult
decisions and informed me that there is help available. It was quite
a struggle for me on weather to treat or not. I loved my boy
birthmark and all. Why get rid of it? The issue of Bullies were
there but not strong enough to seek treatment. Then everyone started
talking about complications that can arise in adulthood. After
researching this (still being an obsessive first time mom) we looked
into treatments. Canada is different from the US in the treatment of
PWS, and the one clinic in the area, wouldn’t even consider
treatment until he was at least 2 years of age. So it was settled.
We would start treatments once he turned two and if he decided when
he was older to stop we would. But, for now we still had to rule out
Sturge Webber Syndrome
Well after two MRI’s with contrast, and two EEG’s
it was determined that Clae did not have SWS. He had multiple eye
exams and tests for glaucoma, appointments with neurologists, more
dermatologists and developmental specialists. So many tests for such
a little boy. But he never minded, nothing ever seemed to bother
Clae. He grew into such a smart, handsome boy. He had a huge dimpled
smile that would melt any heart that saw it. His laugh made everyone
turn and laugh right along with him. Everyone that ever met Clae was
touched in some way by his magical personality.
Clae was lucky. He had so much love in his life;
more than I thought was possible. Paul’s parents went their separate
ways when he was younger, but it enabled Clae to have three sets of
grandparents. We never had to worry about a sitter considering all
the grandparents were within a 20 min. drive from our home. They all
took part in a Clae day that was one day of the week that one set of
grandparents got him all to themselves.
All parents brag about their children, and I am
certainly no different. This one moment on his second birthday is
fresh in my memory and I tell any ear that will listen, in this case
any eye that will read. We had one of those magnetic sketchpads for
him and he was great at telling us what each thing we drew sounded
like. A car, made vroom vroom sounds, a snake hissed, a dog barked.
He could point out any letter from 26 letters of the alphabet that
we asked. It might take him a minute of looking, but he would never
give up, and would always find it. He was truly a brilliant little
boy. (I’m not biased though.) On Clae’s second birthday, Grampy
(Paul’s dad) wanted to show us what Clae had learned at their house.
Grampy took the sketchpad in hand and wrote out the letters m, o and
m. Oh the proud tears that filled my eyes when I saw Clae’s little
finger underline the letters and read out loud, mom. Everyone
screamed with excitement and he clapped right along with all of us.
Then he did the same for the words Dad, and Nan. A few days later he
was reading, ball. Well I could go on and on at how brilliant our
little boy was, let alone handsome.
Unfortunately, all we have now is memories. And
every one of them makes us smile, except those from the last two
days of our baby’s life. Clae only ever had two colds in his two
years. Neither were even that bad, just a runny nose and a cough,
not enough to stop him from playing and falling over from laughing
so hard. So the morning that he woke up vomiting scared me a little.
“Oh, don’t be silly mom,” I thought to myself “his first flu bug and
you overreact.” By suppertime he has eaten a little and goes to bed
early, but wakes up at 3:30 am with a high fever. Again, I don’t
think it’s much to worry about because he is full of energy, a
little crankier than usual but seems like his regular self. All
Friday he’s back to normal, playing and laughing, and eating so much
I don’t know how he can pack it away. All of a sudden Clae climbs up
on the couch beside me and starts sucking his finger, which always
meant, “Iím tiered mom” but when asked, would climb off the couch
and continue to play, because no little boy ever wants to go to bed.
Well, this was the first time he ever put his arms up to be picked
up and carried to bed. Later that night when Paul and I decided it’s
time for us to go to sleep, I go in to make sure Clae is still
covered and see him laying there wide awake in a bed full of vomit.
Paul takes him out of bed and cleans him up while I try to take his
temperature. He’s irritated by us being so close to him and I can’t
get a full reading, but it’s over 40 and still climbing. “Why didn’t
he call out to us?” We wonder as we rush into emergency.
We wait for hours in the small waiting room with
other children who all look like they have the flu, it must be going
around. By the time we get to see a Doctor, hours have passed. She
asks us how long he’s been vomiting and having diarrhea. We explain
that he hasn’t had diarrhea at all, and only vomited yesterday
morning and this evening. She does a neck manipulation on him, which
I’ve always known to be a test to rule out meningitis. Clae has
never responded to pain in the same way that most people do, so
during the test, I’m watching his face and tell her that his neck is
sore. She dismisses what I say, so I think that the test must not be
for soreness but maybe for stiffness. She’s the doctor; she knows
how to make him better. So she gives us Pedialyte, tells us it’s
just the flu and sends us home. It is 7:20 in the morning when we
get to go home and she tells us to get some sleep because we’ve been
up all night and continue Pedialyte ever 10 min. once we wake.
We wake up a few hours later because our
2-month-old daughter Cyenna needs to be fed, and we continue with
our instructions. I go in diligently every 10 min., and Clae only
opens his mouth wide enough to suck on the syringe and wont open his
eyes. All I can think is, he should be getting better by now. The
Doctor never told me what to expect from him, how long to continue
giving him the Pedialyte, when he should start getting better. I
don’t know anything. She’s the doctor; she knows how to make him
better. I’m just an over protective, over reacting mother who rushed
her child into emergency at the first signs of flu symptoms. Right?
Well, he’s still not looking any better a few hours later and still
hasn’t wanted to get out of bed. So we decided to go back to
emergency. We figure they’ll only just tell us he has the flu again,
but we know he just doesn’t look right.
This time, there is no wait, we are sent right
into triage and the Doctor (a different one from this morning)
realizes he is badly dehydrated and starts him an IV. He assesses
him awhile later, and he seems to be coming around a little. Little
do we know, at this time the Doctors shift is over and he goes home,
happy that Clae is getting better. That’s when Clae starts to go
downhill, fast! Now he can’t hold his head up. His little head is
just like a big ball of lead, and he starts to moan and grind his
teeth. I run out to tell the first person I see. Still at this point
they all think it is dehydration and the nurse tells me it’s typical
for a dehydrated person not to be able to hold their head up because
they are so weak. Many doctors see us in the next few hours, as Clae
is getting progressively worse. He is starting to posture and
scream, and can no longer move his legs. All of the Dr.’s are asking
about his PWS, and when looking at his body language they ask, “ is
this normal behavior?” Of course not we tell them all. Meanwhile
thinking, what kind of 2 year old has normal behavior like that? It
is hours later when Paul and I are frantic when a new doctor comes
in and looks at Clae for 30 seconds and immediately orders a spinal
When the test results come back positive for
meningitis, they bring him up to PICU. Paul and I have to wait until
they have him settled before we are allowed to go into the room to
see him. When we are finally allowed to enter we have to wear smocks
and a mask and go into a room that is glassed in and separate from
all the other PICU patients. There are so many tubes and machines
hooked up to him we can barely see him through all the wires. We are
by his side the whole time telling him how proud of him we are and
how much we love him. Telling him all the wonderful things we’re
going to do when he gets to go home. We are hollering in his ear how
much we love him because in emergency the dr.’s told us there are
really only 3 outcomes of meningitis. They go home healthy, become
deaf, or die. So we are trying to make sure he can at least hear us.
He just has to know how much we love him!
After hours of being beside Clae crying and
talking non-stop to him the Doctor tells us, “We need to talk.” No!
how can this be happening! He’s not going to say it! no, he’s not
going to say it!! But, he does. Clae is brain dead.
Paul and I get to say our goodbyes. They bring in
a rocking chair for me to sit in and hold my little baby boy as all
of the machines are turned off. How can this be happening, how can
we say goodbye when there are so many things left to do? I don’t
want to leave, I want to hold him forever, I don’t want to forget
how he smells and how he feels in my arms. I can’t leave, I can’t
I know now that I never will. I will be
holding him forever!