* Captions by June Yeow. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2018 (FUNKY MUSIC) Kia ora. I'm Courtenay. I'm a 39-year-old mother of six. (GENTLE MUSIC) Demar is my eldest baby. She's 21. She contracted pneumococcal meningitis when she was 5 months old. So she has cerebral palsy, epilepsy, hydrocephalus. She's feisty. She's my homie. She's my girl, and she's pretty cool. Matariki is our second-eldest girl. She's 12 going on 25. Lots of energy; very smart girl; beautiful girl. She's my great help and great friend. My husband, Matetu, is my rock. We're an undeniable team. Love him to bits. Our baby, Tahumatua, is 7. He has autism. He's our smallest superhero ` full of energy, full of surprises. My family is loyal and kind and humble. All superheroes. (CHUCKLES) Together, Courtenay and Matetu have six kids. Three of them live at home. (POIGNANT MUSIC) (VOCALISES) She's got a sore stomach. She's got wind. Mm. So she's just had a big burp, but she's still got more. So she's just uncomfortable. And it's first day back at school. (VOCALISES) She's obviously non-verbal, but she talks to me with her eyes, like, um... her right eye can look where she wants to look sometimes. It's a very intense relationship ` 21 years in the making. When Demar got sick at 5 months old, it was suggested that maybe it would be better for her and for us as a family that she goes into a home. (POIGNANT MUSIC) Her disabilities were so severe that there wasn't much hope for her to have any quality of life. Obviously that didn't sit right for me. She wasn't supposed to survive many times, and many times she's tried to die. But I go by Demar. If it's ready and it's her time, it's her time. We just take a day at a time, and today she's well and she's great. She's just celebrated her 21st birthday. (SINGING IN MAORI) (SINGING CONTINUES) TEARFULLY: Thank you all for coming. Cos the other weekend, she was in hospital and we didn't know what she was doing. But she's always strong, and she gets through everything. Thank youse all for coming. # Karanga mataatua # e te ope nei. # Haere mai, haere mai, # haere mai ra. # Mauria mai te taonga, # te aroha e. # I tikitia ra # i roto e # ki te manawa e... Kia rite! # ...kia rite ake ai # ka wawata... # I have to go to Nan's house? Yep. For my birthday party? For your birthday party? Yes. When is your birthday? On 8 February. Yes! How old are you gonna be? A wizard. You're gonna be 8! 8! Ko wai to ingoa? Ko wai to ingoa? Ingoa? Ko wai to ingoa? Ko wai to ingoa. Ko... Ko... to ingoa. Tahumatua's autism - that's not all he is. He's a boy with autism. And he's not just autistic. That's one part of him. He's so much more than that, and his autism gives him just these abilities that not a lot of us have. So we don't see it as a hindrance of any type. And he's very affectionate and very able and strong. Demar and Tahumatua ` their needs are very loud and very obvious. And so we make sure that we put a lot of time into the big kids ` probably worry about the big kids more. It's just about embracing whoever you are, and I think that's what we're trying to teach them. And so I think different is really cool. I love different, and now they are really compassionate people. Matariki is Matetu's oldest daughter. I met Matariki just before she was 1, so she's one of my babies that I didn't have to give birth to, which is amazing. Been a relationship that we've developed, eh, over the years. And now I think I'm so grateful for her. She, like, constantly goes and never stops. Yeah, she's consistent with that with me and Tahumatua. Like, if she's still tired, she'll still talk about our day with us, talk about everything. Did you have to give that note back? Yeah. (SPEAKS INDISTINCTLY) Cos I think the details were on there. There's, like, no stop button for her. She just keeps going and going. If she's tired, she still makes us a kai. Yeah, she constantly keeps going. Hi, Court! Hi, Sue. Hi. How are you doing? All right. How are you? Demar has caregivers for 11 hours per week. Why's she so tired? What's been happening? Oh, first day back. Sue is a part-time carer. I love it. She was initially a challenge. There's no shortcuts with her. She can open that mouth and tell you what's what in no uncertain terms if it's not going her way ` Little Miss High Maintenance. I don't know if I'm cut out for this, but I wouldn't have it any other way now. I'm pretty protective over her. I think as all her support workers ` once they get to know her and get into her routine ` it's not your routine, it's her routine ` and it works. So having someone like Sue coming in is really important for me. She's honest, she's good at her job, she's prompt, she's reliable. And that's really important. And it's taken me a long time to find people that I'd let in. Demar's my inspiration. When I'm having a really bad day, I'll look at her and think, you know, my problems pale in comparison. And I wish more people could get to interact with just this one little girl. Could make such an impact on their mental status. There you go. At the top of the list for me is you need to love her. You just need to love her. We can sort out all the nappies and the hair. We can do all that. But you need to love her. I need to feel that from you, otherwise it's never going to work. It won't work. Nearly done. I know now that I had control issues. You know, I've let go a little bit, but with regards to her, mm, tiny bit. Mm. There's just too much at stake if I let go too much. Mm. Typical day for me starts at 3am, 4am, 5am. Demar is up a lot during the night, so today I've been up since 5. It's always really busy. There's not a whole lot of downtime, but it is what it is. Eat your breakfast, son. No! Eat your breakfast, son. Demar is tube fed three times a day. She's been fed like this for 15 years. When Demar first got sick, I was only 18. It felt like I wasn't credible because I was young and I was a new mum. And Demar was only 5 months old when she got sick. Half the battle is being taken seriously. (ENERGETIC MUSIC) Bye, son. Say goodbye to Dad. Good one. (GRUNTS) Come here. (CHUCKLES) Eh! Eh you! Mm. Mm. Squeeze. Your turn. (CHUCKLES) My turn. Come on. Love you. Bye, darl. Have a good day. Cheers. Here. Stand up. Quick. Are we have` have a picnic? A picnic? We can have a picnic. On Ben and Holly's Little Kingdom? Having a son with autism, for me, was quite exciting, actually. Cool ` how does this kid learn? Demar's one person and Tahumatua is a whole new ball game. When he was diagnosed, I was like, 'Wow, what does that mean?' And 'What do we do?' And 'What will he do?' And I found it exciting that this kid was` Oh, he's got some really cool things that he does. I think, for me, I reacted a little bit differently to Courtenay. I was broken. I didn't know actually what it meant. So I Googled it. The first picture on whatever Google was toys stacked up and toys in a line, and that's what son did. And I said, 'Oh, he's got it.' That's what I thought to myself, and I was having a bit of a tangi about it. What I've learnt is he can do and far exceed any sort of expectation that I would have had for him, which is pretty cool. And we've started to see some of those things already. He's a genius, so... Yep. Yeah. Our family has just got different needs. Still needs like every other family with kids. Ours are just different. Really different. Ears, ears, ears. I think we're lucky. I think we were picked to have two superheroes in our family. (WHIRRING) All right. Bye, son. Bye. # Tena koe ` hello to one. # Tena koutou ` hello to two. # So Kea Street Specialist School here in Rotorua ` Demar first started here in 2007. So she's been here for a long time. Good. Demar's going to put her name up. Just touch there. Closer. There we go. That's very good. Well done, Demar. Yeah. # Hokihoki tonu mai. # Te wairua o te tau. # Ki te awhi Reinga, # Ki tenei kiri e. # Ki tenei kiri e. # My name is...? What's your name? ...Demar. My name is... Demar! Demar. Demar will go put her name up where her hat is. Demar will go put her name on. So she can go up to the front. There we go. Here you are, Demar. That's your name here. It's your turn. (SPEAKS INDISTINCTLY) Yes. Find the time. COURTENAY: Tahumatua started here at Bay School earlier this year. Teachers here I think all have a special quality to them. We've certainly got a whole raft of wonderful people who work here, so we're really lucky. (MELLOW MUSIC) So now that Demar's turned 21, her funding changes slightly. So we'll be sourcing new funding for her education. So I'm here at Kea Street School. I'm meeting with CCS to talk about Demar's transition next year. This is her last year at school, so got a few things to look at and decide on for her. 'I have concerns about finding a place that can cope with her physical disabilities. 'Yeah, that she's now entering the adult world and what that might look like for her. 'So little bit worried.' So Transition works with young people in their last year of school. It's basically about finding out what the young person wants to do and then trying to make that a reality for them. So if you think of the perfect life for Demar in a year's time, that's what we'll be working towards. OK. She's currently getting the funding for very high needs. At school? At school. Yep. So does she still get some type of funding? Yeah. So you've got Ministry of Health funding as well at home? The support workers coming in and` Yes. Yeah? How much of that do you have? 11 hours. So Demar ` can she be left on her own? No. So she needs full-time...? Yeah. OK. What about if she had her own support worker and then they went to somewhere together? So she had that staff person designated to her, and then she went somewhere like St Chads for morning activities ` you know, she might enjoy doing the music stuff or that kind of thing. Yeah. So that she's not just alone with the support worker all the time, because that can get pretty boring, I'm sure. Yeah, that sounds fabulous. Yeah. (CHUCKLES) Yeah. OK. The meeting with Sandy from CCS went really well. Not always easy finding someone you can click with and acknowledges and appreciates how difficult those decisions are for us as a family and making sure we're aware of all the support that's available. (GENTLE MUSIC) Here we go. Bye. We're here at Rotorua Hospital for Demar's ultrasound appointment. I think it was crucial for me to understand everything that was happening to her and why it was happening, and so I did have to study things. I did have to ask loads of questions every time we had an examination of some type. And I'm the one that needs to make the decisions for her. That will never be taken lightly. So for the last 21 years, I've been there asking all these questions, and so, yeah, I have gathered quite an extensive knowledge on the medical side of care for Demar. And, you know, this child is completely vulnerable and dependent on you to make the right call for her. And so that means that you need to understand and you need to be in the conversation. So now we don't get spoken to. We're spoken with, and I think that's really crucial. She had a really bad stomach infection, so I think we're just double-checking that it's all gone. (CELL PHONE CHIMES) Courtenay has a reputation in our local hospital and within our DHB for her knowledge and experience of raising someone with Demar's amount of needs. This is where we do our ultrasound scans. Some of her expertise far exceeds some of the doctors' and the medical staff. All right? Here. Slow. Hi! She'll be all right. That's all good. So what happens is we have a good look around. We look at the liver and the kidneys and the things that we can see with ultrasound. Yep. Then my radiologist will be looking at the images and be writing your report. OK. That will go back to the doctor. So I can see the peg there that's feeding her ` the feeding device. She did have a C. diff infection, though, so I just assumed we were double-checking that that's all clear. It said on the request that the liver function, when she was in hospital, was a little bit raised. Yep. And so they wanted us to have a look at her liver. OK. Yep. So before she came in, was she fairly well? She has had a lot of black discharge from the peg site, so I guess we were just eliminating the internal bleeding. Yeah. Yeah. Okie-dokie. (VOCALISES) Obviously had enough of me. You're OK. It's OK. Good girl. I think I've got enough information. Cool. Yeah. Thank you very much for your help. Good girl. You've done really well. (POIGNANT MUSIC) We did prepare for Demar's funeral in 2007. She was going into a surgery where she only had about a 50% chance of survival. So we went prepared, and to ensure that we upheld her mana, it just felt like we needed to be prepared so we didn't let her down should the worst happen. I won't do that again. I won't anticipate her death. That was tough. Mm. It's hard to be` I could fight all day every day, and I do. But it's hard to be in that space and be grateful. Yeah. Cos they're conflicting emotions, so it's hard. But I'll do it. And I'll continue to do it. (SNIFFLES) Yeah. My husband's taught me to take things as they come and not to worry about 'what if this happens' and 'what if it doesn't?' That's a lot of energy that I was using, but, yep, certainly, I've had lots of issues with anxiety. Yeah. And now my anxiety is usually from a happy place. You need help? Uh,... yep. Can you take those two bags and the bottle? I think love is the reason for it all, actually. Yep. My husband, Matetu, is gentle, and he's very kind. He's not a man of many words, but just everything to me. Yep. I'm so grateful for him. (MELLOW MUSIC) (MUSIC CONTINUES) Some of my family over the years have said, 'No. You're too much for taking on that.' And I said, 'Oh, it's more about the ma, really, for me.' Uh... Yeah, she's just... Yeah. Pretty cool. (CHUCKLES) I remember hearing in our early days somebody saying how lucky I was because I'd found a man that accepted... us. And I always thought that he was lucky (LAUGHS) to have us. Yeah. But, yeah. Yeah, Dad's cool. He's pretty kickback ` watches TV most of the time. But when I don't do the dishes right, he'll make me do it again. (CHUCKLES) But, yeah, he's cool. I think that'd look really nice... Yeah. ...down and curled. Just cos your hair's in really good condition. Yeah. Not like... Not dry. Moxie ` she's cool. Moxie is Courtenay ` my dad Matetu's wife. She's nice to talk to. Like, she understands. She's like, 'Oh, I've been through that.' She can help me with that. Yeah, she just keeps going. Doesn't stop because she's having a bad day. Yeah, she's an inspiration. Am I serving yours? Yes, please. My family look after me so well so that I can look after Demar. I have a bond with all my kids. But I guess because Demar communicates differently, we're more in tune with each other, I guess. She's given me much more than I could ever give her. When you see the struggles that she goes through, life isn't so bad. So for us, all our kids are always first. Everything is around the kids. (LINE RINGS) Hi, Mum! Hi, my darling. How are you? I'm good. Good. How's everybody there? Good. Oh, that's good. So the other day, when we went into the hospital for that ultrasound on her abdomen, that's come back all clear. Oh, that's good. Yeah. Yeah, we were talking about all of you last night at our potluck dinner and I was saying (TEARFULLY) how proud I was. And all your auntie and uncles... CRIES: You would have been really pleased to hear what they had to say about you and your girl and Tahumatua. Just so strong, my darling, and so loving. You know, I often look at you and think, 'Wow, is that really my girl?' So proud of you. I take my hat off to you, darling. Thanks, Mum. All right. Love you, darling. Love you too. All right. Bye. Bye, darling. Oh my God. I knew that was coming too. God. (SNIFFLES) Sorry. What does 'you' time look like? Um... (LAUGHS) Um, maybe getting a meal with my husband. Um, watching TV? (LAUGHS) Mm. I don't know. We've talked about prioritising that sort of stuff. We've talked about it, but doesn't always happen. I think the intent is there. We know how important our relationship is. And our communication is amazing, so I talk to him about everything, as he does to me. And that's our connection. We need a home of our own so we can make some alterations for Demar to her living environment, her living space. She's getting bigger. She's gonna need wider corridors and doors and bigger hoists and all her equipment and stuff. And we can't just fit into normal homes any more. And it's important that we get a home that we can alter for Demar and we can all fit when all our kids are here and... ..and they can spread out. Somewhere stable and hopefully when we get some mokos in about 20 years,... 50. ...you know, they can come. 50 years, whenever. (CHUCKLES) (VOCALISES) Good girl. I'm really proud of my family. We've come from a place that was a bit hard, and we didn't know how to get through some stuff. And we've learnt how to do that now. (VOCALISES) I guess I just want to show who we are and what we've done in the hope that if there's any other family that's struggling, maybe, or that watches this and may need something, and we may be able to help. We have an abundance of joy in our house. We have more joy than any other emotion in our house. We've got some pretty cool kids, so we find joy in the craziest places every day. Demar gives me joy just by looking at her. This child that's been through so much; that can't do a thing, apparently; gives the most. (POIGNANT MUSIC) I need to speak. That's not always in a fight. It's just to make sure that we're represented in the conversation. And I know how important that is now. Initially, this journey made me fall into the shadows cos I was so unsure of myself and unsure of this new world that we were embarking on, you know, and the medical stuff. It was all very overwhelming. So I just listened and nodded, and then it felt unfair cos I didn't know what I was agreeing to, and so it just starts from a place of struggle, I guess. I'm happy to use my voice now. So now I... I know my self-worth. I know my role. And I'm OK. I sit in a good place... with myself. (CHUCKLES) Yeah. Yep. Captions by June Yeow. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2018