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The Day Everything Changed

By Pat Albertson

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 preschoolers 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 anticonvulsant 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.”

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