We have the best two kids in the world – every parent should think their kids are the best by the way. But truly, they are very cool.
I’ve decided to write about Liz because so many people ask about her and her ‘story’. Most say they notice something a little different about her but can’t put their finger on it. So here goes.
Liz was born at 2.10am on December 31st, 1989. It was a normal pregnancy, a long birth, but you know the first labour, as soon as you get a bit of pain you think it’s all started. She was a bit of a floppy baby at first but fed REALLY well.
Things progressed normally for a few years but there were some differences. Things like she packed the biggest tantrums if she couldn’t go with her dad. She didn’t like going to sleep. Her speech was slow in developing. She didn’t interact with kids the same age. Liz crawled at 12 months and walked at 13.
Liz has always had the cutest smile and her personality has taken her a long way. She’s always been an outdoor girl. Forget playing with dolls and having pretend tea parties. Get her to ride with her dad on the farm bike and that was another thing.
When Liz was 3 we went to India for 3 weeks. Both the girls got the chickenpox and I remember my sister Angela nearly throwing them at me when we returned (she was a champ). After this, our pastor sat with us and suggested that we take Liz to the doctors as she wasn’t advancing as fast as her peers. I’d suspected for a while that something wasn’t right but for Pete there was no way that HIS daughter had anything wrong with her.
Eventually we took her to our GP who got her into some tests and then a speech therapist. Jeanette was the best thing since sliced bread. Until we left Tokoroa Liz would meet up with her each week. I still have all of Lizzies speech language books. I still remember all the specialists visits, the blood tests, the million and one questions about pregnancy, birth and milestones. Liz knew every test by heart because she had them year after year.
It wasn’t until years later that we were told that Liz had a syndrome called ‘Global Delayed Development’ and that she was mildly intellectually disabled. Basically she was 6 – 8 years behind what she should’ve been. We were devastated and went back to Jeanette with THE piece of paper. Her reply – “I knew it but didn’t want you putting her or yourselves in a box. Liz will be able to do what Liz can do”. Sure, she had therapy to try and do buttons up, Riding for the Disabled, visits to a child psychologist for her anxiety issues. There were some really tough times – on all of us.
There were times of going one step forward and two steps back. There was the time in her teenage years when you could see her getting depressed and it looked like a little bit of her (inside) was dying each day. There was her younger sister who had everything she didn’t, and Liz became aware of it. There were the struggles of her trying to do mainstream subjects and finding it really difficult. There were the heartaches of her going to youth group and coming home upset because not one person who talked to her.
And then there were the victories. When she was 17 Liz learned to tie up her shoelaces. She finished high school (neither Pete nor I had). She got to be the youngest deacon ever in church. Liz got into photography and helped out with that. There are some phenomenal older people who’ve become Lizzies honorary grandparents and she loves them to bits. The times she has got employed were great and now she volunteers 5 days a week at a preschool in Nairobi.
Who would’ve thought that this kid who hated to be touched, was scared of the ocean and couldn’t put 2 words together when she was 3 ½ could’ve turned out to such an incredible young adult. When Liz was little all I wanted her to do was to hold my hand, but her skin got negative impulses from touch and it had to be trained. When she was about 18 she started holding my hand in public, and it was a bit embarrassing until I thought to myself ‘I’ve waited all these years for it and I’m going to enjoy it’. I’m not sure how she overcame her fright of the ocean but now you can’t get her out of it.
I remember the first time Liz said ‘I love you’. I was hanging out the laundry in Tokoroa and Liz was playing outside. That’s a trillion dollar memory.
So what does the future hold for Liz? Who the heck knows – well actually God does and I’m pretty comfortable with that. She’s been receiving the disability pension for the last couple of years while we were in Australia. Because we moved from New Zealand to Aussie she had to wait 10 years for it. Then we moved to Kenya. For the past 18 months she has had to travel back to Aussie every 13 weeks to keep that pension. Most of it goes on travel and she’s had a blast doing it.
The new regulation is that she has to travel back every 6 weeks. It’s insane, but there are not exceptions to the rule, even if you are helping vulnerable kids in a developing country. We are now in the final stages of the next step. It involves her getting assessed by a GP to see if she is at a stage of never being employed (sweeping a broom could be a job). Next, she is interviewed by a Centrelink rep. Then, we wait 6 months for their decision. Either her pension will be stopped or they will allow her to keep getting it without her returning every 6 weeks.
We’re hoping for the latter but preparing for the former. Having Liz go back every 6 weeks is a real killer. Trying to find flights that she can pay for is tough. Finding places for Liz to stay is getting tougher. We’ve had some really generous people who’ve had Liz over but you can’t keep using them. Then, what is she to do each day? It’s like living in 2 worlds. While she is away it’s not the real world – people never get ticked off with you, you don’t have any responsibilities, people spoil you. Then it takes a good month to settle into life back here and then you do it all over again.
We are so grateful that Liz is an easy going person. She still has lots of challenges (low reading level, not good at handling money and not always the greatest at reading social cues) but they may be lifelong things. Liz needs a good amount of support for daily living, but she is doing okay for now.
And now is all that matters.