Married to a Quadriplegic

Hear Naomi's journey of falling in love with her now husband, who just so happens to be a quadriplegic, conceiving their daughter though IVF during covid and their incredible, one of a kind life, together!

Naomi and her husband Reece are a power couple with insane resilience, hope and positivity.

Thank you for sharing your life with us, Naomi.

Transcript

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Bye.

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Welcome beautiful mamas, I am your host Shea Harrison. This podcast is a place for Springfield and local surrounding area mamas to share their stories about life, motherhood and everything in between, completely judgement free. I am so excited to be able to share these stories with you and give women an opportunity to be heard. So if you're ready to laugh, open your mind and be part of a supportive sharing community, let's crack on. Welcome beautiful mamas, I am your host Shea Harrison. This podcast is a place for Springfield and local surrounding area mamas to share their stories about life, motherhood and everything in between, completely judgement free.

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Today's podcast is proudly brought to you by Bloom Exercise Physiology. Bloom Exercise Physiology are women's health exercise physiologists helping women through conception, pregnancy and the postnatal period by using exercise in the treatment of pregnancy and postnatal related conditions and supporting you in your return to activity. You can reach them at bloomexercisephysiology at gmail.com. If you would like to feature on one of our podcasts as either a small business or guest to tell your story You can reach us at Gym and Tonic Movement on Facebook or Instagram. Let's go.

SPEAKER_00: 1:17

Hello, welcome to the podcast. How are you going? Good, thanks for having me. You're so welcome. So as always, I'll just get you to introduce yourself and then we will crack on with your story. So my name is Naomi. I am 35. I had to think about that. Yes, I did. I live in the Ipswich area. I have an almost two-year-old daughter, Addie, and my now husband, Rhys. We got married in October last year. Congratulations. Beautiful weddings. Yes, it was beautiful. Beautiful,

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beautiful. Great. Well, I am really excited to share your story because I don't think that it's

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very common. No, not at all. I don't know of anyone really locally who. No, but I'm sure there are. Yeah, absolutely. I don't think it's common. Like you said, there are probably relationships like this. So let's go. So my husband, Rhys, has a spinal cord injury or an SCI abbreviated. He has a C5. C6 complete spinal cord injury so that means but there's all varying degrees of spinal cord injury and everyone's affected very differently depending on where it is and how complete it is so complete would be pretty much straight through the spinal cord incomplete might have affected a little bit of the spinal cord but his is classified as complete so pretty much at C5 C6 which is your vertebrae in your neck is pretty much where the injury happened is pretty much straight through the spinal cord. So from the nerve function at that point in the spinal cord, he has no motor function. So he had this injury well before he met me. He actually said it was 12 years ago the other day, which is crazy. So he's in a wheelchair. So he's in a wheelchair. He has an electric and a manual chair. But he's manning in the electric purely for being able to drive around and things like that. I'll talk a bit about that maybe later. So is

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he

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classified as a

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quadriplegic?

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Has that been changed now? No. So he's quadriplegic or tetraplegic is the correct term. So quad being four means it affects his four limbs. Yes. So both legs and both arms. So is that three? Yes. No, Tetra's the same. Oh, okay. Tetra's just the more, I suppose, scientific. In-depth. Yeah, okay. Yeah. And that means, so for him, his function and his sensation stops at about his nipple line. Yep. So he has no use of his core or his lower limbs, his legs, and he has limited use of his upper limbs. So in terms of sensation, he can feel from above. of his nipple. Yep. So if I touch his the top of his chest or his shoulders, he can feel that. But because it's a quad, he has limited use of his arms. So his biceps work. Yep. His triceps technically don't work. Parts of his shoulders work, but some parts don't. Yep. He has like a little bit of upper lat, but no lower lat because your lats are your big back muscles. Yep. He has no dexterity in his hands. So the muscles in his wrists and fingers don't work. So he has no grip. limited grip um he can't grasp onto things he can't hold things with his hands um and and hence why he's in a wheelchair um he's able to like in a manual wheelchair he's able to push a wheelchair yeah um because you use your triceps more for pushing um they're called triceps are called in the in the spinal cord world they're called the pushing muscles so they do a lot of tricep training when they're when they're doing um their rehab and exercise programs and things like that yeah um um and yeah so that's kind of in terms of physical sense and then in terms of sensation so yeah he can't feel anything from his nipples down but he can like face yeah face so kissing and affection he can but he like and it like i said before every spinal cord injury is really different like someone could have the exact same spinal cord level injury yeah and they'll have slightly different function and sensation to the neck so he can um he gets really weird things like he'll get a nerve of tingly sensation in his face, which tells him he needs to wean. Oh, wow. Totally. And it's something that he's probably been able to develop over the years. Like... cottoning onto sensations in his, the sensations he does get in his body, but yet like weird things like that. Yeah. And you know, he can sometimes still get, if you're like, sometimes it is a bit like subconscious sort of like if someone touches him on the foot, like, you know, the drag across your toes and your toes curl up. He can, not that he can feel that, but he knows it's happening type of thing and his toes will still curl up. So there's still... Like muscle memory? Yeah. yeah and just nerve response so there are still and spinal cord injuries like in this there's so much research going into it and they're still so unsure but there are still pathways which seem to want to work but don't properly and no one knows why yet

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yeah yeah

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and like yeah so um some really random things happen with the body yeah um and then so because you can't um nothing works from below the nipple line um things like um bowel function um uh doesn't work so he has to have assistance with that um with his bladder he's been able to train his bladder to um and people do this very different ways with spinal cord injury like people have catheters or self catheter um he has a indwelling catheter so he has like a little basically a little tube um has been put into his abdomen through to his bladder and so he can basically self go to the toilet with this tube and that's where the little funny tingling sensation comes in so he's like I need to go wee yep and he can basically go to a normal toilet granted it's a disabled one with some room some room yep and go to the toilet

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wow

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with a tube

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that's

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incredible and he's had to train his body up a bit to do that yes and yeah create those new pathways yeah create those new pathways wow that's so

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interesting so I guess how did he you said you mentioned 12

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years ago he had an accident yeah so he was a young 25 year old boy in the navy in the north the territory uh actually no he just discharged he literally just discharged purely because he wanted to try something else no other reason and um he was um dirt bike riding motorbike oh and he was just one of those fluky things where he was wearing a helmet but hadn't got his proper neck brace yet and went over a jump came off um came off his bike as he came as it was coming off the jump and he landed on his feet and then a split second later the handlebars came down and hit him in the head and broke his neck and there was not a single other scratch on his body or injury and it was just his neck oh my goodness and he was in I think he was in Catherine at the time so they took him I think they took him to a hospital close to there but then they took him straight to Adelaide oh no he was there so there was a long period of time between proper care so he was in the hospital would have had no because i think catherine's a bear base yeah so in darwin so there's not a lot out there yeah and i'm not sure about it would have been down to adelaide and one of the things is spinal cord injury and they know this now is the quicker you release the pressure off the spinal cord the better your outcomes are okay so because he had such a long period of you know waiting for helicopter and that's probably one of the reasons why his injury is so severe because he had pressure on his spinal cord for that long whereas now they're pretty not and depending on situation as well where you are when it happens but if something like that happens they're very on to getting them to like somewhere like the PA which is specific to spinal cord injury to get that pressure off and get them into surgery to put stents in and braces and all that sort of stuff right so the outcomes are better now than they were 12 years ago granted that you're close to a hospital and that's you know so yeah he was there's lots of variables there obviously a lot of variables yeah so he was in Adelaide for at least six weeks in intensive care and then he came back up to the PA so he was originally from Rocky he was a Rocky boy but he'd been in the Navy for the last like five or six years so he'd done his traveling and lived all over and whatnot and he was so discharged and he was planning on going and doing like he was an outdoor guy so he was planning on going doing like helicopter firefighting and all that sort of like he was that sort of person and then he had that happen he was in Adelaide they brought him back up to Brisbane because it was the closest one to where his parents were his parents were in Rocky and And he was in the PA for about six months, I think. Sorry, Prince Alfred is where they do all of that, have the big spinal cord injury unit and brain injury as well. So they do all the rehab and stuff there. He was very, from what he's told me and also from like how he is now, he was very onto researching what to do. So from the get-go when this happened to him, he was like looking into sexual health and fertility and excess training and rehab and like he was just researching everything so that he could live his life live his life yeah um that's really proactive he was like and that like because Yeah, the stuff that he tells me that he was doing back then as, you know, also a young 25-year-old male. Yeah. But he was very proactive. What did he do in the Navy? He was in gunnery, so... Yeah, okay. Already wild boys. Yeah, he was a very, very typical Navy wild boy. Yeah, yeah. I told him I wouldn't have come near him with a 10-inch pole if I'd met him back then, probably. Yeah, yeah. Um... So he was researching everything. Yeah, super proactive. And even so, when he got out of hospital, he would just... He was... I suppose, very dedicated to everything in a way. And he says in a way he isolated himself because he was so focused on rehab. Like, you know, he'd sit at home and do exercises with his hands every night, you know, to try and get some, you know, grip strength ability back. And, you know, and every day he'd be at the gym or every day he'd be working at home. You know, he'd spend all his funding on exercise equipment and all that. You know, he was super dedicated. super focused on that and at the time so when he had his accident he was with an ex-partner and they were living together somewhere near Catherine and she was with him for about 18 months after the injury and then they separated and then after that separation he put even more into all of his rehab and things like that but I guess with spinal cord injury as well is i suppose it's a bit different now but back then because he his level of injury was so severe there isn't unfortunately there isn't a lot that can change like you can support the body and you can keep everything as strong and healthy as possible but you can't change the injury itself and that's where all the research is going at the moment like you can't change you've got a spinal cord injury it's not like you've torn a bicep and you you can repair it

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yeah

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the spinal cord is is severed or you know partially severed so you can't technically you get back movement in your legs yeah again there is more research going into it and there's lots of stuff that is happening where people are starting to be able to walk but that's you know a whole other story yeah um so you are kind of so rehab in a sense is it's more just supporting yeah and maintaining yeah so when he was working through all of these things he didn't have this hope that he would always has that hope yeah okay so he's never let go of that yeah okay you know he if he says you know if we ever win the lottery and that are we going over to this university which has this program running and we're going to do this to try this because he would do anything to get not so much the um i mean walking using his legs would be amazing but it's things like bowel function and sexual function and all those sorts of things which um every people without injuries you know we don't even think about the fact that we have that ability but when you lose it and then um yeah you don't have it anymore and you're having people help you with those things yeah it's um if you could gain those things back would make such a difference to quality of life

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yeah absolutely

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yeah

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that's really i love that he's still so positive and hopeful yeah that there is

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there's an outcome there could be an outcome there's something out there that's still and that's that there is so much research at the moment but um unfortunately it's slow because you know nothing happens overnight and you you know you need funding and all that sort of stuff but there is a lot more coming out which is promising for you know at least people in the future that's really great yeah so how did you two meet then you said that the accident was obviously a while ago yeah so we we've been together four years now and we met at his gym probably know that we would have met at his gym five years ago when he was training there so there's a gym in Brisbane which specializes in disability so he goes there and does all these cool funky training like he gets up and walks and wow um they they're it's really awesome um and i was doing my finishing off my exercise physiology degree and my last placement was at so it's called sporting wheelies um in inner city brisbane um and he was one of the clients there so i we joke about the fact that the first time we met i was most likely holding his glutes up in a harness while he was walking on a treadmill because that's what you have to do you've got to sit yeah their whole body while they move their limbs on a treadmill yeah um and he was a nice guy he was very he was always a very quiet fairly quiet and it was hard to get talking with the students because he was so focused on his training yeah yeah so he'd be polite and nice and stuff but and i was i'm also quite a quiet and reserved person so you know we'd be polite and you know talk about a bit of chit chat um and then you're just holding his bum and i'm just holding a treadmill and it's because you know in at this gym you're very physical with the clients like you're having to help move them around so you know and other so other times I probably would have been holding him up on these armpits while he was doing art you know so it's very hands-on very hands-on yeah um and anyway that I was with a partner at the time anyway and it's professional it's a professional environment absolutely yeah I mean now that you're married it's fun to joke about these things yeah um and then we oh that that finished I finished my degree um had nothing to do with each other and then I was single again about a year later online and I swiped across and I saw him and I was like oh I know him obviously he's a guy covered in tats and a wheelchair I was like that's recent yeah and I remembered him being a really nice guy and I think it was Bumble so I was like how does Bumble work the girl has the female has to initiate it I think on Bumble

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I'm not too sure

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anyway so I messaged him and I was like hey how are you going and very quick he asked me out um and it was um that's why it's you know it's really you know it sounds terrible but you do you think about hang on a second this guy's in a wheelchair and I knew what sort of I knew about his injury because I'd worked with him and I knew like things that he couldn't couldn't do and you know you all those things go through your head um but anyway I was pretty open to anything at the time and um we I love that you have like I can't think of the word like you went through that process like hang on yeah is this yeah is this something that I want because it is it would be I can only assume obviously be a lot to take on yeah and so you I can that's so normal and I love that you've gone oh and you've said that rather than

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no I was open to it we were good to go

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like yeah I can't and you know at that so I would have been 30 almost 31 or 31 yeah that's right yeah and so I was I was I wasn't on there I wasn't on online dating for five on I was online dating because I wanted to meet someone like I wanted to get married and have kids my entire life so it wasn't just a play around thing it was I'm trying to meet someone obviously not marry the first person I mean I'm going to date and meet someone that I like but I think like going back to you know knowing about his injury knowing the things that he could and couldn't do and that kind of making me think about it it also helped in a way because having worked with him at the gym and other people with disabilities I also could see what sort of amazing lives they were still able to lead like I had that better understanding of you know they aren't these people who sit at home all day and also don't you know don't have any social skills or whatever it is like they are still real people and you know they live great lives. I always remember my mum saying like it's not a disabled person it's a person with a disability because they're a person before their disability yeah exactly so yeah we went on our first actually we had our first day here at the library no we're at the library guys just um he asked me to meet him at so i was living in inner city brisbane and i was an inner city brisbane girl for a very long time and he lived out in greater ipswich um and he asked me to meet him at the hotel at um springfield hotel no um the one near the lakes no the one here orion orion hotel yeah yeah yeah the orion hotel okay um and so we met here we met there yeah and um it was a sunday afternoon sunday set and i could not hear a thing oh and so we did those really awkward like nodding and like did not hear it yeah um anyway i was super nervous and he said he was so so nervous um anyway he asked me for he had something happening like they always someone was visiting some family was visiting and he knew he'd be preoccupied for like two weeks so he really wanted to see me again so we like he was pretty like it was he seemed very keen but I think it was just he wanted to see me again before there was a big gap so we had another date not long after um and yeah we just it went pretty quickly and um again that those cautions were probably still running through my head um but he was such a nice guy and it was so easy and I think it did help that I hadn't had met him previously I knew a bit about him I knew a bit about his injury um um that it didn't his injury didn't like it wasn't he and that goes the same for anyone with an injury or a disability they're not their injury so and even now i don't even like you know he's in a wheelchair 24 7 apart from at night time i don't see that like he is just reese to me um and it always has been like that apart from you know those those cautionary things we do we know we talked about fertility and sex and all that sort of stuff really early on um We've got to. Yeah. Yeah. And we had those conversations, but it's still, everything still felt really like. Natural? Natural, yeah. And that's what you want when you meet someone that... Just clicks. It clicks, yeah. It clicked really quickly, and yeah. I'm trying to think what happened next. We dated for a bit, but then we were pretty official. I don't know. Actually, because we met in like... We had our first date in November, and I think we were pretty official by Christmas time. Wow. So what was it... Obviously, you had an understanding of his injuries and everything, but

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what was it about him that you... Or was it just this feeling that...

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like did he make you laugh did he he was just he's just such a calm person and i'm not ah yeah well i think i always think i'm calm but i'm not really yeah well i don't mean like i don't know you but i understand what you're saying yes um he is he's got this really just calmness about him which i think goes really well with someone who's more anxious highly strong highly strong i'm highly strong as well yeah um yeah and he just for what he's been through um he just he was so positive and positive positive not in this sense that I'm going to heal myself and I'm going to be better and you know the world is amazing just positive in that you know I can still do this we can still do that um and positive just about general life stuff like me stressing out about stupid shit he's just like it's alright do it differently the next day whatever it is he's just a calm person yeah irrespective of his injury he's just a nice calm person um and he's a yeah made me laugh um very dad jokey

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yeah

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um and just yeah i just felt really relaxed around him

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yeah yeah

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um which was nice that's lovely yeah and he was a good kisser oh good yeah that was obviously that above next sensation is still present yeah yeah good that's awesome so as you've said you you obviously were official and then you've had a baby Yes. So how long were you together? We were, so we've, We weren't even together. So we spoke about that sort of stuff really early on, and I think he wanted to as well because he wanted to put all the cards on the table. He was the same age? He's a year older. Oh, yeah, near enough, yeah. And he was in the same situation as me, like always wanted to, you know, have a family, probably not so much have to get married, but he wanted a partner and, you know, always wanted to have kids. And again, like I said, he'd done all the research when he'd had his injury about, you know, what, you know, the possibilities and whatnot. So do you want me to go into too much information? about how things work with him as much as you're willing to share i find this also interesting i read this thing the other day that my personality type um i want to learn i want to know everything and some people find like that i'm being nosy but it's not i'm just so curious and you know it's it's good for people to have an understanding yeah and like i said so everyone with a spinal cord injury is very different and that goes that's the same for sexual health as well so um he's gonna kill me for saying this but for reese he has the ability to get an erection so there are still still nerve signals and whatnot which allow him to do that but he can't ejaculate with sex okay um but he can ejaculate with basically med well no not basically they are medical grade vibrators oh okay things you can they're medical tools they're not well you do buy them online but they're not you know just from a sex shop they are medical grade yeah um so he has the ability to do that um and it also that's really cool i love that like this has obviously been no a problem i shouldn't um like uh an obstacle for years but these things have been thought of it's not just oh well chips out too bad but in saying that no one um educates not no one very few professionals educate people's spinal cord injury about these things he has had to do all this research himself

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wow

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yeah so there's a lot more information from the states about it yeah um but in australia is that where these medical devices have come from so we had to order it from the states wow yeah um So he has the ability to do that and that also gives him pleasure. So he can, he still feels like he's having, he says it's not the same as pre-injury, but it still feels like he's having an orgasm basically. That's amazing. Yeah. Oh

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wow.

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It's not as easy as just every day you do, you know, it takes time and like. practice and all that sort of stuff yes yes um so yes ability to do that so technically we thought we could still um conceive naturally but like a turkey basing sort of way so we so we started talking about this about 10 months into our relationship in terms of okay we're 32 33 we would like to have a kid this could take us longer because of our situation um why don't we start trying yeah um and so we did try that a little bit and it wasn't very successful it also like i said it's time consuming so it It's not, you know, it's not romantic and it's not easy, quick to do. So, you know, in terms of, you know, you've got your ovulation window and whatnot. So you've got to have the right time and the, you know, it's not just he can jump into bed. I've got to get him into bed and all those sorts of things. So it was a little bit frustrating. So like, let's look into IVF straight away. Because again, that whole process could take a while. So we'll start looking into it. So we started looking into that IVF. 14 months into our relationship. And That was 2020, no, when did COVID hit? 2019. Yeah, I think 2020 was

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when like we went into lockdown in April.

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Yeah.

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Because I, Kelly was born in December and then we

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went into lockdown the next year. So I think it started like in China. Yeah, so Ellie was born in 2021. So start of 2020 was when we started the IVF process. And as stressful as all of that is, we were very lucky and it did cope fairly smoothly apart from the April lockdown when I just had my egg retrieval and we got one embryo which again that whole process is super stressful you know they tell you how many eggs you've got and that they have harvested harvested and then only one fertilized no sorry a couple of fertilized but then we only got the one embryo at the end one good embryo I suppose yeah and we were going to do a embryo transfer like the next my next cycle because of my body needed a rest because it had been so full on And then we went into lockdown and our embryo was locked away from us. And that was absolutely horrible. Cause it was just like that kind of disconnect. Like there was a process and like, right, you know, this day that will happen, dah, dah, dah. And then everything shut down and you're just like, it just, it's really weird. Like, you're like, I can't actually, we can't actually access our embryo. Anyway, it all worked out. Cause wasn't it as well at the beginning of lockdown, you could see a doctor for medical procedures, but

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IVF was not included

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in that list? No, it kind of chopped and changed really frequently throughout that year, I think. Yeah. But that happened to be the one where, yeah, IVF clinics were pretty much shut down unless you had a pretty severe medical reason to continue the process or start the process. I don't think they're letting anyone start the process either, actually. Yeah, okay. How devastating. But in saying that, I was so stressed that my cycle lengthened itself. Yeah. And the doors opened to the clinic and I was... right on the right day to have a transfer basically and so i went in and i had transfer and that was addy wow as stressful as it was it was super quick like we were like started ibf in january we're like this could take us a while yeah yeah and i was pregnant by may yeah that's amazing and do you think like when

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she was just an embryo do you think oh my goodness like that was my little baby just sitting in a little dish

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yeah like we couldn't access her or not like that it's yeah it's a hard concept yeah a little bit yeah I've not gone through IVF so I'm just curious it's um Yeah, I don't know. Yeah. It was just weird. It was hard. Yeah. Weird feeling. Yeah. But yeah, so that was Addie. That's incredible. She's so cute. That hair, man. Yeah. When she was really small. She had so much hair. Well, she still does. Her hair's almost down to her bum now. Wow. And she's not even two. Yeah. That's amazing. Pregnant with Addie. Yeah. Pregnancy was fairly smooth. Yeah. Pretty straightforward. And then... coming up to like labor or birth and all that sort of stuff i was quite stressed about reese not being able i should have gone into this before so with reese's inability to use his bowels independently he has a carer every morning which assists him with what they call manual bowel therapy yep um and he has to do that every day and again everyone with an injury is different so some people do it every day every second day every third day but his routine is every day to make sure that he basically doesn't poo himself during the day yep um so every morning he is on the toilet for a long period of time with um a support worker helping him assisting him and that has to happen pretty much well it's never not happened really yeah um so even through covid yeah so they were still they still were allowed to come in um and again different situations some people have their partners do it or family members um reese's all always wanted to keep his that side of his life very much separate from his like so his mum he lived with his mum for a long period of time so he's never let his mum do it he's never wants me to do it um you know there might be a time when that comes but for now yeah he likes to keep that very separate um so um you were going into labor yes so in terms of preparing for that and you know i didn't want to be induced and that sort of thing yes so it was like well what if i'm about to have a baby and he's sitting on the toilet and he literally Did you birth at a hospital? Yes, so I was at Ipswich Hospital and it ended up... So I was just going to say, was there a concern about also getting him to the hospital? Yeah, so that was one of the things that we... So Rhys can drive. Okay, yep. So he was able to drive himself there. But again, depending on the time of day, we're like, how is he going to get there and whatnot? It was one of the things we discussed with the midwives a lot was things like, you know, what if it ended up in emergency C-section? Can we get his... You know, is he going to be allowed in the room because he's got... know equipment which isn't covered and all that sort of stuff so we had they had discussions with the surgical team and all that so they were amazing with that so everyone knew that he was a quad in a wheelchair and that when i came in he'd be in there you know they were going to give us the biggest birthing suite or if it was a c-section to you know um they were going to make sure that he was gowned up and could come in unless you know it was under a general all that sort of stuff so we planned all that and that put my mind at ease a bit um and in the end i was induced um but they were again they were amazing I had gone in overnight, and he was due to come in early the next morning, but they were in the middle of the night. They're like, hang on a second. We really want to induce you properly now because, you know, you've got meconium in your waters and all that fun stuff. Yeah, yeah. And they were like, but we know Reese isn't coming into the morning. We understand your situation. If bub's all okay, I'll let you wait till the morning. And she was fine, which is great. So there was... who knows what would have happened if she wasn't alright but everything did go really smoothly apart from the fact that the birth was pretty didn't go how I wanted to the fact that Rhys was able to be there went perfectly so everyone on the team knew that he was coming in all the doctors knew all the midwives knew even when they swapped shifts they knew who he was and the situation so like you know they moved things out of the way so he could be next to me and so that they were amazing with that that's incredible and the fact that I was induced as horribly it was worked to our favor in that he was there at the right time he was able to be there i labored all through the day she was born at five o'clock in the afternoon so it was perfect for him um he was there the whole time yeah and um yeah so then we had a newborn yeah um and I suppose, yeah, during the pregnancy, we tried to mentally prepare ourselves a little bit as much as you can for having a baby, which is pretty hard. Yes. You know, one of his biggest fears was always that he wouldn't be able to do what he wanted to do as a parent. He always saw himself as a very hands-on parent. Like I said, he was a very active guy. So, you know, he wanted to be able to play sport with his kids. And he knew those things. those things that would come up later on as a parent would be really hard for him um the newborn stage actually wasn't too bad so he's able to like i said at the start he can use his biceps if you can imagine holding a baby a little baby that's mainly bicep

SPEAKER_01: 34:18

yeah

SPEAKER_00: 34:18

so he was able to um we'd have like cushions on his lap and he could hold her um and because he's in an electric wheelchair he can like change his angle and like seat so he's leaning back a bit so it's more supported and all those sorts of things he's got an armrest so his arm would be supported Um, so newborn was fairly okay. Apart from like the lack of sleep and whatnot. Um, he was still able to help out a bit. He was also, because it was COVID times, he was working from home. So he was there like, and he is still working from home. So that's been amazing. He's been there the whole time of her growing up. Um, do you have family

SPEAKER_01: 34:50

support?

SPEAKER_00: 34:51

So yeah, his mom's really close, like down the street. Awesome. And my parents are two hours away. So not too far. Yeah. Um, so, um, as she started to move more it was a bit trickier yeah um but again we kind of just figured out ways to um like we use different carriers so um we've got these hilarious photos of addy like strapped to him in an ergo with her face out like facing forward so she would sit we'd go shopping and i was able to the ergo would extend enough that i could wrap it around his wheelchair so it was super secure um and she'd sit in the front and he'd really wheel around the the shops with her sitting in the front of the ergo so things like that did all that hair get in his face yeah pretty much so we'd have like this spiky hair up in his up in his um his nose and his mouth oh good um yeah so we did things like that um we soon pretty soon realized that so his wheelchair um has like a for his for him to be able to drive it has like this little supportive we call it a wing so it like sits up and it locks his arm in So if you can think of an arm, like an armchair, you've got your arm on there and it's like a little wing on the side which keeps your arm in. From sliding off? Yeah. So Addie, from like three or four months, and because she was such a big baby as well and fairly strong, she could sit in on that chair. that um the armchair with the wing up and he'd have his arm around her a little bit and she'd be wedged in and she'd just sit there and again they'd go around the house or the shopping center and she'd be like locked in there um and that's how he would um uh i suppose hold her and look after her it was tricky that he couldn't like soothe her or calm her because he couldn't really like rock or walk um he did try wheeling her around a bit but that just wasn't enough sometimes so that was tricky so like she wouldn't calm down and he would have to give her to me um um so we just kind of figured out um you know ways to do things as we went and i'm sure it's been a lot harder for him because it hasn't bothered me if i've had to go and get her or pick her up or whatever but it's bothered him because he wants to be able to do that um night times are hard and they always have been you know because it has been me that always always has to get up or soothe or calm her and you know lots of you know situations and families are like that anyway yeah and some babies will only go to mum and Addie's always been like that anyway so irrespective of his injury I think she would have been like that a mummy's girl no matter what but you know when we've had really rough nights and it has always been me and it has always been me getting up with her in the morning because he takes three hours to get up yeah those things are hard for him and hard for me like it's probably more that I'm just you know I get so fatigued and then i you know then i'm grumpy and moody moody so he's upset that he i couldn't help me in the first place and then annoyed not annoyed but upset that now then i'm tired or whatever so those those are the things which have been hard yeah um and now that she's you know walking around and stuff he's able to interact with her a lot more like they can go around the house or go around the yard and do things again it's not as much as he wants to do and i'm sure that is so much harder for for him than I probably realise or can understand, you know, that he can't just kick a ball with her. But there are, you know, ways that he's figured out how to do stuff with her. And now, so instead of sitting on the side of the wheelchair, she sits on the feet of his wheelchair and zooms around on there. That's so cute. So she gets to do cool, fun things like that. That lots of children are never going to experience. Yeah, yeah. Wow. That's incredible. Yeah, so that's where, yeah, so she's almost two now. Yeah. And we're still sleep deprived. and um maybe thinking about another one but yeah now that we're kind of getting a little bit of sleep we'd like to see the independence yeah yeah you lose it all over again yeah that was really tough going from one to two i found that um worth it if you do decide to go down that route and

SPEAKER_01: 39:05

if not yeah that's incredible i am just so blown away with race's resilience but yours as well i think that it's such a a big it's probably not it

SPEAKER_00: 39:17

like you said you just connected with him but yeah don't think that there would be hundreds of people no and that's yeah that's the other thing is like when we first started even just dating i like started looking for like you know different people's stories and whatnot and there is there is a bit out there but there's not a lot again like i said more in the states than there is here yeah and i know a couple of families who are in a similar situation but um yeah it's not spoken about a lot because it is you know it is rarer um but yeah it's you know um our life is trickier in some ways than others but we also you know have other things which are easier come easier to us and you know because we do have so much support

SPEAKER_01: 39:55

yes

SPEAKER_00: 39:56

um you know we get help around the house because of his disability and all those sorts of things so which you know makes things easier in one way but harder enough yeah i understand what you're saying yeah