It is Stiaan’s birthday today. Sweet 16.
Pretty normal thing for most kids to get excited about, isn’t it?
So we know. Not sure
if he will ever understand the concept of birthdays. Irma will go fetch him this morning in
Kempton Park and then they will pick Martin up from school. Tonight we will open presents! He will act surprised. We will all smile and take happy snappies!
16 years ago Stiaan was born in Clinton Clinic. Premature at eight months. It was the same night when I returned from
hospital that I was almost attacked / hi-jacked as I got off the highway at
about 3 AM . Fortunately I saw the
bastards running up to me and there was no other traffic around so I made sure I got home very fast. But this story is about Stiaan, not me. I could not wait to share the news so I
‘phoned my late mum-in-law up at that time of night and told her that she had a
new grandson. I told her that Irma was
OK and that Stiaan was OK. There also was
a lot of not-so-OK-stuff I did not know about at that time that I could not
tell her.
I knew he was very small at birth but I thought that was
simply because he was prem. I had a
concern about his malformed toes but the pediatrician assured me it was nothing
to worry about. Those were the immediate
worries. If I only knew then.
During the next few months we were introduced to worlds only
other people live in. One of the new
worlds was that of people who have constantlly ill children. It was difficult for us. We did not understand. We had no issues with bringing up Martin,
Stiaan’s older brother. Like khakibos. It grows.
No issues. Not that Martin is khakibos. He is exactly the opposite thereof. What was wrong with Stiaan?
Stiaan would not suck.
“Suck or starve”, the pediatrician told us. He would not suck, and we would not let him
starve. So we fed him with syringes. Every few hours. He was crying all the time. We did not know what to do. Many a time he would fall asleep on my
stomach, with Irma waking up in a panic a couple of hours later and asking
where he was. Still on my stomach. Sometimes I would let him gently slide off
and let him sleep between us. For the
first six months of his life, and I’m not lying, Stiaan was more in hospital
than at home. We learned to pack his
bags when we took him to a doctor as we knew he was going to be admitted.
While Irma was still on maternity leave I would drop her at
the hospital and Martin at daycare in the morning, and go to work. After work I would pick Martin up, go to
hospital and pick Irma up. We were not
sure if we could trust the nurses feeding Stiaan with a syringe. Not too many people have the patience to do
that with a baby who is suppose to drink from a bottle.
When doing a first aid course many years ago the instructor
told us that most people would on average get in a situation only once where
they would need to administer
mouth-to-mouth. One night I had my turn
with Stiaan. Good thing I did that
course.
Another world we became part of is that of parents who have
more than one pediatrician for their child.
Who in their right mind would want to do that? Well, we did, but we only had two of them on
our books while we had the account to settle of the first one. We decided to get a second opinion. Things changed immediately. At six months of
age Stiaan was admitted to hospital for the last time – to this day! The new pediatrician kept him there for about
two weeks. At that time we had a
wonderful nanny taking care of Stiaan as no daycare close to us would take him
in. Once again, every morning we would
drive from Crown Gardens to Linksfiled Clinic to drop her so she could feed
Stiaan and take care of him during the day, then into the CBD to go to
work. In the evening back to Linksfield
and back to Crown Gardens. Up to this
very day I can’t drive past the Linksfield off-ramps on the N3 without thinking
of those two weeks. During that time every
possible test was run on him. We had
more specialists and laboratory bills from those two weeks than most people
receive in a lifetime. Then the results
came. And the phone call from the
consulting rooms. “Doctor wants to see you”.
So, we became part of yet another world only other people
live in. We officially became the
parents of a disabled child. Denying was
not an option. The proof was there,
black on white, on the results of the lab test we now have to send a copy to
SARS every year as they still need proof every year that Stiaan’s chromosomal
defect was not fixed. I find this very
funny, not only because he can't be fixed, but also because they keep accepting a document issued 15 years ago! The same results we had to submit to the
department of education to get Stiaan exempt from attending school when he
turned seven. The same results the
doctor handed to us with copies from a medical text book from the 60’s
describing his condition. His condition
was first described in medical journals by the same doctor who described Downs
syndrome. The text book copies were
clear: Stiaan had an IQ just enough to
keep him alive.
It took a few days for this idea to sink in. The first thing we were told was to change
his formula. Not S26 or the other stuff
you buy in shops. Some stuff I can’t
remember the name of and you had to put in a special order at a pharmacy. Yet another death sentence to the
wallet. And guess what? The six months of constant crying stopped the
moment we changed the formula. The
internet became our best friend. We
searched, saved and took in everything we could on Cri-du-Chat. We ordered videos from Australia, joined
support groups, and then we made a decision.
Despite all the new worlds we were living in, we were going
to let Stiaan live in as much of a normal world as we can give him.
During the next ten years Stiaan was pushed to his limits
with weekly physiotherapy, speech therapy, swimming lessons, attending a school
for disabled during the day, coming home in the evenings. At age of about ten years we decided to move
him to a permanent home. This was one of
the hardest decisions we ever had to take.
Well, for me it was. There were
various reasons for doing this. I guess the
main reason is that that rest of the family was busy falling apart. For ten years, all attention was on Stiaan,
all the time. Irma and I haven’t had a
proper holiday since our honeymoon.
Martin was known as the kid with the disabled brother, the one whom was
often teased at Sunday school and school.
Most of us were often greeted with “Hello, how is Stiaan?” We had to bring the balance back into our
lives. We had to live again.
So where is Stiaan now?
Stiaan is in his happy place. It
costs us a fortune to have him at Casa Caritas, but so costs life. He still can’t walk properly and sometime
bum-crawl holes into new pants within a day, he still can’t talk but we
understand his gestures (I prefer the word gestures to signs as he uses more
than just his hands to indicate something.
In most cases it is a complete “show” of hands, face, sounds and body) and
the few words he tries to say. He is
still on nappies and possibly will be for the rest of his life. He has a wheelchair for outings to the zoo –
we stopped taking him to shops long time ago.
Not because we can’t handle the stares and remarks of people living in a
normal world, simply because we got gatvol of picking up everything he throws
off the shelves! He recognizes a few
basic colours, some numbers, and he can “tell” you on which channel the TV is
by looking at the logos. He recognizes
most animals and has gestures for them. He
recognizes Ho-Ho-Ho and can’t wait to open his “pakkies” on Christmas Eve. He loves smiling and can put on a real act
when asked to smile! He loves watching
scary late-night movies with Martin when he is at home, and always wants
someone to play hide-and-seek with him.
He gets very excited when we go fetch him for a weekend but also make it
clear that he is not always happy when we take him back. He craves attention and we have to make sure
we don’t plan anything else for when he comes home. A “Stiaan”-weekend is a “STIAAN”-weekend! He loves watching TV and will not move if
there is cricket on TV. If he is not
happy with what is on TV he will make you understand that you must change
channels until he finds something he wants to watch. He has an army of teddies and other soft
toys. Each has a name and he remembers
their names – and don’t dare make a mistake and call a teddy by the wrong
name. You will know it is the wrong
name! He will punish you by letting you
call out all the names of all his teddies until you get it right. He gets up early in the mornings and keeps me
company while Irma and Martin still sleep.
He does not like our cats and dogs much but tolerates them – he knows
what is good for him! He loves playing
with his teddies in the empty bath; he can sit there for hours on end. He has a fine sense of humour and likes to be
teased every now and then. He also likes
walking (not stalking) up to you, giving you a frightening “WHA!”
It sounds to me like we are caught up in a pretty normal world,
doesn’t it?
Happy birthday, Stiaan!
