My Perfect Family: Candle Dad
My. Morning routine will. Get the kids up and. Go. Back upstairs ten minutes later and get the kids up just, know. Little. Bacon sandwich. Yes. Okay. That's exciting. Then. Your whole day is always exciting isn't it. Nicky. Over here I, tend. To have to keep on so right you need to do this and then you need to do this and the newly produced I've kind of had to supervise that good morning we've seen a lot probably more than if you would with any other funny one I'm finished early well if just like tiny physical Tom Bergeron thing morning. Again. Emma. Emma. Did. You say good morning to me we Emma. Hi. Nikki ah. Morning. Emma, morning. Morning. Thank. You very much. Yes, it, was only 13 months between them was, really well planned. We. Had. To, wear four kids in, six. Years and three. Bakeries, all. At the same time during that period also we just bought. Our first house which, was a wreck and renovated. It from top to bottom while living in it so that's quite there was a busy sort of period. Right. Tell, us how we're doing for Time Warner, -. We've got 10. Minutes to, get, in the car and you. And I can go after work yeah, take, everybody's, helpful. The. Girls are actually really really different from each other so Niki is very vocal and talks all the time whereas. Emma. Doesn't, talk very much. We're. Just dealing with individuals, and, then the Down syndrome past sort of Emmons is very very secondary so there was good to be able to put that away really early in the face. We're. Ready to go and see your friends. You. Say that every day and then you love it when you go inside. Our. Commutes can take an hour each way in Auckland's, wonderful traffic firsts. We dropped Niki school and then mr an I head off to work. Niki's. Just turned 21 and she's, in her final year at some of all special school and they, can only stay in until their turn 21 and after. That it's, off to work if. They can find a job. Emma. And I we spend our work days at down lights candles it's a business we started just a few months ago. After. Emma, left schools I approached so, many employers to see if they'd give her a job and basically, got nowhere. So. I thought well how. Can self employed most of my life so why. Don't I just set up my own business and then she can work in that. We've. Always had candles at home and Emma really likes them so I thought let's, make candles, that'll. Be a piece of cake. How. Did you candles okay it's not piece of cake this apparently. Has got hidden depths and it's a lot more difficult than nerds and you would think. After. Only, a week, or so no, saint to these friends though I think. I need some advice about this and, my. Friends set up. Kennel, company that she lives just down the road I. Was. A little concerned about, the. Steps he was taking with the, business so I offered, him the opportunity to. Use. The, manufacturing.
Facility, At Illumina, so that it would save. Him, costs, at the beginning and to. Show, him a few tricks of the trade I. Was. Born in Canada. And I've lived in New Zealand for, 22, years I, fell, in love with New Zealand and I just had to stay I've, always, been, involved in something crafty, so making. Candles just seemed like a fun thing to do. Tony. Had a very small range a few fragrances, he did this market, and that. Led to 7:00. Sharp doing a story with Tim Wilson you probably don't know about candle, making as it happens a pretty, high temperature how warm. Is it it's. A secret. It's secretly, warm after, that we sold a candle, a minute for. Two days so we very quickly developed. A business, name a tagline. Ordered. New glassware developed. A logo all within, three. Or four days the. Name down lights oh definitely. Wanted to have a connection between Down, syndrome and the. Name of the company. Thank. You for, Jennifer. And Illumina, to basically, hand over her intellectual property so quickly to us four, or five years of worth of experience and really, really hard work which we haven't had to go through you, know your intentions. And goals with Emma were just so genuine, and I. Just really, wanted. You to succeed for, for. Emma so that she, would have something. In. Her life every, day and there. Was just no way I could have. Let. You flop. When. We first started everything was had to be supervised whereas now it's just a case of just point out that needs doing and, within. 30 seconds she's up and doing it and on, her own so once you learn how to do the jobs they're not set, the task walk. Away just right into it and it's really good. She's. Really, risen to the challenge of the fact of having to get up every, day and Travels. Work and spend the whole day at work but she's no she's really putting herself into a big-time. Yeah. You do that and. I'll get the wax. Since, we started doing this that prefer independence, has really blossomed it's been fantastic really, to see to see the changes in her. She. Feels, the treatment from what she's doing you know world through jobs and she'll. Be smiling away at the end of it when we've finished it you know she's obviously very proud, of herself and and, what we're doing. Her. Conference, just it's growing. And. What's. That. I. Think. Is is. Trophy. Trophy. World. When. They turn 21 that, is the biggest challenge because. Businesses. Often, don't take, on. People. With disabilities. We. Have a lot of opportunities, William to. Practice. The skills that they personally need for, when they finish school there, really flew unique step and, unfortunately. In a lot of cases that. Next step doesn't, happen and the. Disappearance that I talked to really struggle because, they would, like their. Child, to, continue going to work we. Need to do some stretches ready. To do so strict just kind of stand over here. Having. A job having, a role having a purpose, gives them a reason to get up in the morning. They'd, like to contribute to society what. Tony's, done is given em up an opportunity to, create, a life that she wants and I feel that will be the same for Nikki as well. Do. You know where that was what country was that hey it wasn't spying it was in France Paris, yeah, okay. Remember, going to Spain. Yeah. Food, was fantastic. What's. The next picture press about. Four. And a half years ago I sold the cafe that we had in Marathi and. We. Traveled. I'd. Been working seven. Days a week for 25-30, years so we decided that we were travel. And. So. We went to Europe Spain, and France a lot, of time in the UK to, eat do, you like it there no, no, hey, I was, really amazed you know that well I don't know why should be amazing because nothing they do amazes me anymore here they.
Hey. I'm travelling. Like, a duck to water. Okay. You. Love pictures of yourself. Who's. That girl. It's. Emma you're looking gorgeous there ever there's. Been Harrison Hey it was just a little boy he's, taller than me now first. In line Harrison, so he's our oldest seventeen, months later Claudia came along and, then Emma, was born undiagnosed. But was diagnosed at birth with Down syndrome. Which. At, the time was, really devastating, it wasn't something we'd considered. All. Those questions why me, what have I done to my family. All. The destructive Christians. That you do see yourself like what if what. If I just stayed with two I should have just stayed with two and then had. The weirdest dream and it was my grandmother saying it's good, okay and I woke up in the morning feeling like our. Weight would have been lifted off my shoulders that was quite bizarre I could see black-and-white television. Documentaries. Pictures, in my head of. Institutionalized. People. So, devastating. Really and it's like oh god that's. What we've got to look forward to Carolyn. Was the receptionist, at. A business where I went looking for a job and. Was. Very pleased to meet the receptionist. Our. Decision about having another, child after, Emma I think a lot of our friends probably cut the thought oh really. He want to have more kids the, initial thought was I let's. Have another baby when that will sort of push, Emma along from behind and, once. You've got three kids he lost anyway so might. As well have four will, have 40 doesn't make any difference you're. So immersed. In family. Nicky, was born 13. Months after Emma and, lo, and behold then she was born with Down syndrome as, well. We. Was even, more shocked than we were the first time around and. The. First the initial thought was slow it's. Just just disaster. The. Way it's actually turned out is completely the opposite, if Nicky had been born as, an average person she. Probably would have overtaken Emma and. Emma. Would have been left as the. One child sort of on her own in a way they'd, get on like a house on fire so it's fantastic they're gonna have a friend for, life I wouldn't, be without change. A thing if I had my time over my. Head I wish Theory come down and say I could change it all for you I just say no go away really. They're. Just amazing, kids. Yeah. So Carolyn. Was diagnosed, with breast cancer in. 2007. Basically. The option was a mastectomy and Karen said right booked me and tomorrow we're. Gonna do something about this, she. Had six months of chemo it, was pronounced. Fit and well there she'd she'd beaten it. Unfortunately. Cancer. Decided, it was gonna make a return visit. To Carolyn. Only a few years later. And. Then shoo so she was read I ignite again with her even. More serious. Cancer in 2010. And, this. This. Time they told us it was terminal, can you cut their place. After. She passed away I decided that her positive, attitude was something which I have to. Mimic. To start off but because of doesn't say it wasn't a particularly positive person, at the time. And. I, figured, that I. Live. By the mantra of attitude. Positive, which. Is something I actually ended. Up having it tattooed on my chest so that every morning when I woke up I could look at that and go, that's. How you're gonna be today and. You've only gonna do it for a day and. Then the next day you've only got to do it for another day and eventually. You keep on trying. To live like that and try to live like that and eventually you do and you actually start, becoming. That, way. I. Trust, you Nikki I. Think. The issues for, me at that time were practical, issues and, I was still running a business which, was a cafe, at the time seven, days a week starting. At 7 a.m. finishing, at 5 p.m. and had about 70 hours a week and look. After four kids at the same time so. Claudia, my, oldest, daughter was due. To go to university, at a particular point and I suggested, to her that maybe she delays. The.
University, For a year and she helped. Me look after Nikki and we. Talked about it and decided that's I would, take, him/her Nikki on kind. Of doing the school runs in the morning you know waking up getting. Them ready driving them to school and if. They, won't need it after, school activities, I would be in charge of that from. Her and Nikki it was great because it gave him. Someone. To focus on who was you, know consistent, every day drop in med school they had a routine that they could stick to it, was really good just to spend a lot of time with my sisters I got, to spend a lot of time with my dad and I did have to grow up a little bit you know I was 17, fresh. Out of school going, from hanging with my friends and doing school or day to being essentially. A full-time not, a parent but a caregiver, so, it did make me grow up a little bit faster than maybe I needed to if, that, wasn't the situation but I think ultimately I've, turned out a better person for it during, that period of time where she gave me that grace period I, reorganized. My. Business and. Took. On more stuff and sort, of extracted, myself from, the business so I didn't have to be there the whole time which, meant I couldn't step in and actually take. A more. Active role and being. With the girls or looking after the girls and. It's continued. From there in that way. We're. Eastridge shopping center in Mission. Bay so, we've got a Facebook event happening, so that people know we're here and, often. When we do these events that we get lots of people attempt, to see us you come to meet Emma. It's. Just got better, and better winners to be so outgoing and, so confident. In, herself, and, running. Around smiling and enjoying herself. Thank. You thanks, to your support thank you, she's. Stepped. Up as far as meeting, strangers. To. See her handle. All, these different environments, and, different experiences. And, the. Shyness is going slowly. I, think. I mentioned before you know they're having two. Kids went down to the same family so as you can see they got I think it on like a house on fire and, this. Is. Demonstrated. Constantly. I. Think. People. Respect. The fact that we're trying to do something for ourselves instead, of expecting. Other people to help us so no. It's it's always a great response. It's. About. 1450. Follows. Social. Medias it's. Gone, crazy it makes us feel what, we're doing is something, really worthwhile because so many people are coming. On board and telling, us that I think, I'm fortunate in that that's. Another that's another. Like. So. You're wearing all your plugs. Where. Are you going. Huh. Just. Somewhere you wanna go traveling again a journal. I'm. Gonna, go make some toast. The. Amount of exposure that we've had has been phenomenal, and. Disney. Digital network contacted. Us and said look we want to do an article on our digital. Network and got a fantastic response off that and then, there was a another company in the States who obviously. Had. Connections with Disney somehow or another it's a video production company called, ever hats and, they. In turn came to us and said we, love what you're doing them very really inspired by it and we want to make a promotional. Video so. Ever, hands came, to us and said after they finished. The video and said we've got a connection, with a very. Famous person George Takei, of Star, Trek fame turns. Out that he's got 10 million followers and the.
Bigger It gets the. Better it gets because, we. Will then have to step up production and then, we can start employing other people so the whole idea really is as we. Go further is, to create, a factory. Situation and get a much bigger so. That we can employ other people with dancer. The. Girls again. Hello. There. So. We're at the the Franklin Tap. House in bitch, lands which is our local pub. We. Only, come in twice a week and, because. Some now of course the support. And the following will get the downlights now we're getting people coming up to us and chatting to us when we're in the pub as well which is great that's really into it there. Was a really, big wall that's game on and we came down for that and we, met a couple of bikers who, were, so impressed, with the way that the girls were enjoying. The whole thing and they knew about our story as well so they knew what we were doing and. They were like. Oh. Blast t-shirts and then about a week later I, got a phone call from one of the guys come. And meet us in the pub this afternoon we've got those t-shirts for the girls, so. This, has been another outpouring, of generosity and, the. Way that people have been his support that's brilliant, they're. Just so, full of love like. They're just there to have. Fun and you know make, the most of their time they're just so open and friendly and. Sometimes. Too friendly you know when you go out and they just want to talk to everyone and I'm kind, of more reserved so I like to stay back a bit but they just, you know they love hugs they love laughing, a, couple. Years ago I, decided, every. Nikki's favorite band were in town so, we decided last minute that I would take them there and we, had a great time but I remember talking to this woman who was next to me and she, could obviously recognize, amore and Ikki both had Down syndrome and, so, she started asking me questions and I told her that you, know they're my sisters and the amount of praise that I got from her I found really unusual because she was saying you know you're an incredible sister. How amazing that you're doing this for them but, in my mind I was kind of taken aback a little bit because obviously you. Know did my sisters and I, don't really. Think that their depth that different, from other, people so it's kind of the same as if they didn't have Down syndrome as taking my sisters out I. Shouldn't. Have to stay home just because they have special needs you know they can go, out and have fun and like I probably didn't even need to be there they. Won't find it on their own dancing, and singing at a great time. Kind. Of a reality, check I suppose that you know they are different but, that's just who they are I. Hope. That they can be more. Independent. It. Big, for them to have dreams. And be able to follow those dreams and, actually, have something that they want to do instead of us you, know going cool. It's an idea let's go through with that and then they have a great time anyway but I'd love for them to think. Of stuff on their own to be like this is what I want to do. I. Hope. That they can have a future. Which is not dependent on me and that's really big.
Part Of what this is all about of trying to get, them on that path. I suppose. Practically, speaking that, I think they're gonna need some sort of help they're gonna need some sort of supervision, or just. A nudge here and there but then they've keep on surprising me as well as to how bloody, clever they are. If. Things keep moving as fast as they have in the last few months then. Yeah I think maybe they could be living on their own and just to maybe have someone could just come in and check on them occasionally make sure things okay. Whatever. Their independence, level is I want to get them up as. Far as they possibly can up that ladder I. Don't. Think I've sacrificed anything, I. Think. I've, just done, what. All parents do and I, mean okay you can call it sacrifice but it's not sacrifice, we choose but. How is that a sacrifice if you've chosen to do what you want to do just, not a sacrifice. Those. Started thinking more about the future then what, happens to my youngest tickets, as I, get older and as they get older I. Thought. Is that to sit. Down and write. Down some of my thoughts about, my. Family, the. Children, their. Lives and. Maybe. Their hopes and dreams and, my hopes and dreams for them. All. I just, want to say that I'm very very, lucky man I was. Blessed with the love and the company of a wonderful woman that. Was lucky enough to spend 25. Years with her I know, our greatest achievements, was all of you every. Day I'm. Really. Proud to be your dad. Every. Day I love. You more. Every. Day I worry for you I don't I know I shouldn't, you're, all gonna do great things every. Day I feel. Lucky, to have you in my life. Edda. Truth was made with funding from New Zealand on, air.