
| Issue: | 21,2002 | Page: |
8 |
|
Abstract: |
Story of a father with an
epileptic child |
| Keywords: | father involvement,epilepsy,special needs |
Riki Crosado and his
wife Tracey are parents
of two delightful preschool daughters, two year old Zoe and her eight
month old
sister Thalia. Riki has been an "at
home dad" since the end of 2001, as well as being a night-shift worker
to
bring in a bit more money to help the family make ends meet.
However,
he was given an additional
responsibility when Zoe was diagnosed with epilepsy.
Riki
can still remember the day in November
2000 when Zoe was born. "It was the
most wonderful thing," he says, "Everything was perfect".
Riki never had any problems with taking on
his new role as a father. Zoe was an
easy baby as far as eating and sleeping were concerned, and she smiled
and
laughed a lot. That was the way it was, until one morning in September
2001 when
everything changed for Riki's family.
"Zoe
started to shake like mad in her
cot," says Riki, "Me and Tracey didn't know what was going on, so we
rushed Zoe to the 24 hour clinic, and they sent us to hospital." It was then that Riki and Tracey were told
that, like approximately 1% of the general population, and 2-5% of
children,
Zoe had epilepsy.
Riki
remembers Zoe's first admission to
hospital as being the start of a nightmare that in many ways crushed
Tracey and
him. They were with Zoe in Ward 22 of
Christchurch Hospital and, although the doctors and nurses were great,
Riki
just didn't want to be there. "I
tried to be the 'strong man'", he recalls.
"I was holding it all in; I didn't want to be weak in front of
my wife
and child". During the second day
in hospital Riki's wife convinced him to go and get some food for
himself. "I just sat there in the hospital
coffee
shop with a filled roll, trying to eat.
After the second bite I was crying into a now crushed and ruined
piece
of bread. I must have looked a real
mess, unshaven and unkempt."
Such
was the anguish that Riki felt for his
daughter that he says he would willingly have changed places with her
in the
space of a heartbeat. "I was never
so scared as I was when I was watching my little girl in hospital", he
says. Zoe was "doped up to the
eyeballs" with tubes and drips feeding her medicine.
It was clear that she hated the environment
she was in, and she pulled out the drips with her little hands.
However, Zoe's stay in hospital was to be an
extended one, and it was there that she first learned to crawl. Indeed, she was actually starting to stand by
the time she was discharged.
Up
until the time of Zoe's initial hospital
admission, both Riki and Tracey were in paid employment.
However, with Zoe having up to 13 seizures a
day, a decision was made for Riki to
become an at-home dad, looking after his daughter.
Feelings of isolation have been a problem at
times, but after contacting Father & Child Trust Riki was able to
link into
a men's support group which runs coffee mornings and other activities. Not only does this give him the support that
he needs to fulfil his role as husband and father, it has also given
Zoe a
chance to play with other children her own age.
In
April 2002, Riki and Tracey gave birth to
their second daughter, Thalia.
Riki
remembers this as being a time of both
excitement and fear, as well as "... hope above hope that Thalia was
not
going to follow in Zoe's footsteps".
"The chance of Thalia having epilepsy was small, but it filled
me
with fear," he says. In fact,
Thalia had an approximately 5% chance of
having epilepsy; small odds but still five times as high as for the
general
population. But happily, at eight months
of age, she has shown no signs of having the condition.
Medical
intervention has helped Zoe to the
point where she has not had a seizure for over eight months. This in turn has allowed Riki to take up a
night shift job outside the home in addition to his role as father. With two pre-schoolers to care for, life can
get very busy. "Mornings can become
a bit of a blur sometimes," he says, "but I tend to come right around
lunchtime." To help with this he
has a half day respite a week where he is able to do his own thing
while the
Zoe and Thalia are in care for a few hours.
One thing that he finds interesting is how frequently people in
the
street will comment on how lucky the children are to be out with their
dad, as
if this was some rare and special treat.
Unfortunately for
Zoe, the same
anti-convulsant medication that appears to have her epilepsy under
control has
resulted in her development being so delayed that she has the same
communication level as her much younger sister.
"She cries a lot over little things", says Riki, "(and)
it can be a great drain on my mental strength, trying to find out what
(she)
wants or needs!". However, with the
help of a group of wonderful people from Special Education Services
(SES), Zoe
is slowly starting to catch up.
"The team comes around to my place every Wednesday, and runs Zoe
through different exercises designed to improve her communication
skills to a
level more appropriate to her age."
Although
Riki knows that there is a chance
that Zoe will be unable to catch up and that she may need special help
in
school, he still loves her like the first time he ever got to hold her. "The gratitude that I have for everyone
who has been involved with Zoe's care is something that is very hard to
express
in words", he says. "I can
only say thank you, thank you and thank you over and over again."