EP:43 - Motherhood, My Way: Parenting with SMA

Motherhood & Living with SMA: Everything You Need to Know  

Description:  
Becoming a parent is a life-changing journey, and when you’re living with a long-term condition like Spinal Muscular Atrophy (SMA), it comes with its own unique set of challenges and joys. In this video, we dive into 

Motherhood—the experience of parenting while managing a disability.  

Join us as we discuss:  
✅ Preparing for parenthood with a long-term condition  
✅ Adaptive parenting techniques & equipment  
✅ Navigating healthcare & support systems  
✅ Overcoming challenges & embracing the joys of parenting  

Whether you have SMA, another disability, or just want to learn more about inclusive parenting, this video is packed with insights and real-life experiences to support you on your journey.  

🔔 Don’t forget to like, comment, and subscribe for more content on living with SMA and thriving as a parent!  

#LivingWithSMA #Motorhood #ParentingWithDisability #SMA #AdaptiveParenting

THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ 
You can contact SMA UK on the following social media platforms ⬇️⬇️ 
▶ | INSTAGRAM: https://www.instagram.com/sma_uk 
▶ | TWITTER: https://twitter.com/SMA_UK_ 
▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul... 
 
If you would like to participate in any of our podcasts please email gary.edgecombe@smauk.org.uk
 
Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Transcript

0:04

Hi everyone, and a big welcome to the Living With SMA Podcast. We talk about all things spinal muscular atrophy related, but topics discussed are not exclusively for individuals with SMA, so there should be something here for everyone. We also do things differently. For starters, our charity SMA UK uses different hosts and everyone involved gets a final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast and please do connect with our charity and share your comments online and let us know what you think. From all the team at SMA UK, thank you for listening. Hi, welcome back to Living With SMA Podcast. I'm Molly and today we're joined with Kelly and Louise, who are going to be talking about all things motherhood. If you'll be able to give yourselves a little introduction, sort of how many kids you've got, type of SMA, where you're from, that'd be great. Start with Kelly. Hi, everyone. So I'm Kelly Gordon. I have got two kids, both boys. I'm from Birmingham and I've got SMA Type 3. Hi, everyone. I'm Louise Forrest. I have two children, a girl and a boy, and I live in Durham and I have SMA Type 3. Perfect, thank you. So kind of to get us started with, what did you sort of growing up, what did you think about motherhood generally, sort of perspective of the SMA? What did you kind of think? Did you always want to be a mom? Was it something you kind of thought about later in life? What was your kind of opinions of it? I think for me, like, I didn't expect to. I didn't even think about it, to be honest with you. I didn't really think about wanting to have kids. I always thought about either my career or going out partying and I really wasn't kind of tied to, like, the medical world when it came to my disability. I was really kind of... I wasn't surrounded by anyone with a disability apart from my brother who also has SMA. And we kind of just did our own thing. Obviously now I'm older I realize that's not great and it's an amazing thing to have with the disabled people in your lives. But at the time I was kind of very anti hospital, very anti consultant, didn't really want to think about disability. So I think for me I was quite naive and I actually assumed that there wouldn't be anything for me to think about. I just thought if I do want kids in the future I'd find a partner and then have kids and that would be it. Which I think is a really naive but maybe nice way to look at it because I wasn't thinking about it too much at that time, I guess. Definitely. What about you, Louise? Yeah, I'm probably quite similar but a little bit different. I always imagined having children. I always wanted a family. I never really... When I was younger I never really thought there was any reason that I wouldn't be able to. But I think as I got a bit older I was more, kind of started wondering, will I find a partner that would accept me for everything and all of the challenges that I faced when I did? I started to then think about pregnancy and I did have some doubts creep in, I would definitely say. But I met another lady who was a grandma with SMA and she was a full time wheelchair user and I took huge inspiration from her and hearing how she'd managed. So that really kind of helped assure any of my worries. Definitely. I think that's really nice. I feel like there's not much spoken about in terms of, there's a lot of moms having kids with SMA but you don't really hear about it, sort of the moms having SMA, do you? So I think that's really nice. When it came to sort of you finding a partner, was it something you wanted to get them tested for SMA? Obviously with it being genetic, was it a concern of yours about your partner carrying it and then passing it on? Was it something you kind of considered when you were... I'll go first if you like. Yeah, go on. Sorry. I think for me, I, with my first partner, so I should say as well, I've got two kids but both with different partners or with different dads I should say. So with my first child I was actually married. I was in my mid to late 20s. It was something that we were thinking about and it actually took quite a long time to fall pregnant and so we did have the luxury of kind of planning and finding out, doing the blood work and things like that. But then with Hunter, my second child, it wasn't quite as planned or as long winded. So we did a lot of background research after the fact. However, I think for me it was just a case of, you know, being informed so that we could make informed decisions rather than kind of, you know, I wouldn't have necessarily any negative feelings about that because I have SMA. I'm incredibly happy and, you know, successful with life in every sense of the word. So yeah, it was just a case of feeling more educated and prepared for me I guess. Same. Once after I got married and we knew that we would like children, my husband David, he did get tested and I hadn't really thought about what the result would mean for us, but much more about preparation. I'm same with Kelly, you know, I wouldn't have had any concerns of having a child with SMA. I think more it was, again, around the doubling up of me and my challenges, supporting another child that has physical challenges and how that would work. But it would be about that preparation. But he wasn't a carrier. So although that didn't remove the sort of it all together, it kind of just put it out of our minds entirely. And, you know, once you have the child there's then so many other things as well that genetically they could inherit. I think it just wasn't really a concern for us at all. Okay. How did you find your kind of healthcare team sort of pre getting pregnant in terms of the planning side of it? Were they supportive, were they knowledgeable about things or was something you kind of had to figure out on your own? I think for me definitely figuring it out on my own. I went to just my local hospital, local GP surgery and midwife. So I kind of had the same journey, I suppose that anybody non disabled would have when pregnant. For the first time, again, I think really naively because it was tricky on my body. They didn't know if I'd be able to give birth naturally or if I'd need a C Section. I'm from a town in the Midlands which isn't, you know, linked to any larger hospitals or anything like that really. So I didn't feel like I had an expert in SMA and pregnancy. And I also found that I think I was just a bit too far down the line obviously already being pregnant to kind of get any sort of sound advice from my consultant really. It was kind of a suck it and see approach with my first child which is really scary I think as a first time mom anyway, like not knowing how you're going to be able to give birth, like all those questions that you have as a first time mom, but that rolled in with a disability. It felt pretty daunting. But then with my second, I felt a lot more informed. I knew what my body could and couldn't do and I felt more confident to advocate for myself and the birth that I wanted as well. With my first it was under general anesthetic emergency C Section which isn't pleasant for anybody. And so with my second we tried for a C Section while I was awake with an epidural and it all went well despite me having scoliosis. So I'm sure we'll talk a bit about that later. But it was definitely more pleasant the second time around with more education. Good. Yeah, the team around me were absolutely fantastic. I really would say just couldn't be faltered at all from the preparation. The local muscle team, we talked about us wanting children and what that would look like and they were the ones that had, I guess the experience of SMA, but there wasn't a lot of experience of SMA moms. And particularly, as we'll probably realize listening, our experiences are so different. So even if there was one mom, they were very different to me. I had scoliosis and also had corrective surgery. So we knew straight away the epidural was out and it was going to be a general anesthetic cesarean. So that was planned. But in terms of, I then got moved over to sort of the, away from the muscle team and the normal pregnancy clinic, was having scans every couple of weeks, was having really, really regular checks. I did challenge a few times and say would I be able to have a natural birth? And it was just not going to be an option. So we accepted that, but had really, really good care. They didn't necessarily have the experience of SMA, but I did feel listened to and they were experts and they just couldn't have been any more supportive really. And that was including during the hospital, staying in there as well, having both children. That's amazing. Okay. I mean, so in terms of... I mean, you touched on this briefly already, but the labor and the birth kind of itself, was there anything specific that stands out to you that you feel was significantly more difficult because of your SMA or significantly sort of made easier because you had a better support team around you? Is there anything that kind of stands out to you from that side of it? I think for me, just like sort of the lack of knowledge of my body and what it was able to do. I know that there are people with SMA that have had natural births and I just sort of thought, oh, that'll be me, I'll be able to do it. But for one reason or another, I'm not actually sure because I think there was so much going on at the time. I can't really remember like the mechanics of what meant that I have to go for an emergency C Section. I know that I couldn't get the baby fully out, but I don't know if that was to do with my anatomy, whether it was to do with my muscle strength. I just don't know that fact. I'd absolutely love to get that fact now because I think when you're under anesthetic and going through sort of medical trauma, your brain becomes a bit foggy and you remember things completely differently probably. But I think, like, what I would take away is just the prepared nature and there's nothing wrong with having a C Section. Whereas I think there's a narrative within motherhood in general that C Sections aren't the right way to go, or the healing process is really difficult, or I think it's just about doing your research and being okay with whatever your story ends up to be. Because for me, having a rushed anesthetic and like a rushed C Section that wasn't planned was worlds apart from my second birth when it was a planned C Section and I had the control. It was very, very scary the other way around. So I think it's just a case of making the right decisions and really getting as much information as you can so that you're prepared and you're advocating for yourself on the day. Definitely. How do you feel about it, Louise? For me, the lead up to the actual pregnancy was nowhere near as bad as I thought it was going to be and I think as we were prepared for it to be. I finished work really early thinking that in the last few weeks it was just going to be really, really hard. But it actually wasn't as bad. But I think it was still right to be prepared for that sort of worst case scenario. The actual birth, because we knew that it was going to be a caesarean, I did have in the back of my mind that it wasn't... It definitely wasn't my preferred option, but it was the only option. So I think that made it a little bit easier because that operation enabled me to have two children and without it I wouldn't have been able to do that. So it was different and it meant that my husband held both children before I did, but that was lovely for him, you know, so there was positives. I think what I probably didn't realize was the effect and how tired I would be after not only having a baby, but also a major operation at the same time. Yeah. And it really, really did take it out of me. Probably not as much pain as what maybe... Because I use a wheelchair all of the time, so maybe other mothers that would be trying to move around a bit more might experience more pain. But yeah, it did take a while just to recover from the operation itself. Okay. That kind of leads on to the next question again. So in terms of like when you were back at home with your baby, was there any particular challenges or what was the main things when you were back at home, first few months, things that you found were easier than you expected or were more challenging, any sort of cool little hacks you had that made things a little bit easier? I think for me, just being a first time mom was mega daunting. I really do. And I think, yeah, as Louise was saying, you don't realize how your body is going to recover and how long it's going to take. I'm the sort of person that like will jump back in my wheelchair when I'm meant to be on bed rest and just do everything because that's kind... I'm like a productive person. But people don't speak about like burnout and what that looks like. So for me, I definitely overdid it. The mom guilt was extreme as well, because you don't sort of... Well, I never thought about the future and what that was kind of going to look like. So I think when I was in the situation of having my first child, I think I was 27, I always forget ages. I think I was 27 and I felt like I was too young mentally myself. And I just didn't feel like I was informed. I think that's why I felt too young. It isn't because of my actual age. It was because of my emotional maturity and like my understanding of what everything meant. So it was definitely a learning curve. But for me, I think I've got the beauty of actually having two kids with two different partners and, you know, having a supportive partner is what it's all about, to be honest as well. Just having somebody that can understand what's needed, can share the load. That was game changer for me with my second son because it was a shared responsibility. It wasn't life hacking and trying to figure out how I do everything on my own and feeling massive guilt. It was, you know, we're working together as a team and we can, you know, we can do this. And yeah, it's still hard. I mean, waking up in the middle of the night, getting lifted up the bed, trying to feed the baby while also like feeling like you're not quite yourself, it's not easy, but, you know, it makes all the difference when you've got somebody there that understands and can support as well. Definitely. Yeah, absolutely. I think for me, when both babies were in the first couple of months, they were light and they were small. So although I was very tired, I found them easier to hold them and to feed them and to do all of those things. I tried to do as much as I could. Probably similar to Kelly, did far too much too early and was out driving after a week. And I think I went to show my colleagues in the office after seven days, this is my new baby. Just wanted to show her off. Everyone was sort of quite surprised that I was out and about. But I think as both children got a little bit larger and a bit more wriggly and all of that, it became more of a challenge. And I think the biggest challenge for me was accepting that I needed help. I was so optimistic and thought, I can do this, you know, and it wasn't a tough time, but I think it's just that acceptance. But very similar to what Kelly said, it was that support network around me. I had so many people wanting to help. I didn't necessarily at first want them to do it, but once I got over that hurdle of just accepting, it's like anything that we face with SMA as things change over time, once you've accepted that this is the new phase, you can then move on and realize that it can be a really positive thing, accepting that support when you need it. Definitely. In terms of... I'd love to answer that. Oh, sorry. Sorry, Molly. Go for it. Really linked with that, then what you said, it's, you know, accepting it and moving forward is the key really. I always worried with my eldest that because I had a lot of family support from my mom, like if I was struggling, I would drive over to mom straight away with the baby. And he had such a great bond with my mom when he was younger. And I really worried, like, I'm not going to be seen as a mother figure. Like my mom's a fantastic mom. And I always thought, oh, he's gonna always default to my mom. But that couldn't be further from the truth. Now, it was such a worry back then that because, you know, I didn't have the physical ability to handle the wriggly stage, like you said, that I was going to kind of be forgotten about and that he was going to default over to nan instead of me, but it's just not the case. I can say he's nearly eight now and, I mean, he doesn't leave me alone. So I think it's a real worry at the time, but I think when you understand it and accept it, you can so easily get past that. Definitely. How did you find in terms of healthcare providers after you were back at home, did you have occupational therapists coming out to look at your house and how they can make it better for you? Did you have any help from that side of it or no? I see we're both shaking our heads here. For me, the only reason I had any involvement with the medical team is because I did rush after my first section and also because it was a rushed C Section under emergency, that the stitching wasn't very neat, unfortunately. So my scar did break down, which was really difficult because handling the newborn stage plus having to like keep getting back on the bed and having wounds dressed and packed and things like that, that was just something that just was beyond me and something that I'd not experienced before. So that was particularly difficult. But it did mean that I had regular district nurses coming out. So I suppose I still had that little link to like medical world and like felt like there was somebody around if I did have a serious concern. But in terms of OTs and all that, no, not a peep for me, unfortunately. Okay. Yeah, very similar. With my first, my daughter, we had heavy, heavy snow and I live quite high up north and we even, I think it was the first midwife visit was she couldn't get into the estate, said, is everything okay? So we didn't really see anybody from a medical point of view much at all. I think that's probably where there's... If I could go back and do it again, I would have so much more knowledge about what's available. But we had nothing from an OT. And I think it was maybe when Alice was about six months old, I made the call to social services and sort of said, I need to speak to you, I need someone to come out. And again, that was a huge step because it was... I'd got to the point where I was relying on family support only and needed something more formal in place. So, yeah, it was pretty much radio silence. Okay, interesting. Thank you. The next question, so what in terms of, if there's a new mom out there with SMA and they don't really know kind of how things end up, what sort of pieces of advice would you give any new moms or people planning to start a family with SMA? What advice would you give them? That's a tricky one. I think... Big question. Yeah, for sure. I think as we've kind of spoke about, it's like the research angle that really helps. It's understanding all your options, advocating for yourself, but also just thinking about it and speaking to other moms in the community to figure out kind of what they learned and how you could prepare yourself better for those situations. Like for me, I didn't even, when I had my first... Well, actually when I had both children, I didn't have like a bed riser, anything like that that would have made my life so much easier. I just really used to rely on my husband dragging me up the bed and putting pillows behind my back. And there was loads of these like little things that I didn't think of that would have just made me more independent, made life more easy because I still wanted to do a lot of like the night feed, things like that, and make sure that we could share things out. And it actually worked really well because my sleep, I love to go to sleep really early and I don't mind waking up early. So me and my husband did the shared sort of, I'd have a couple of hours, then he'd have a couple of hours, and then we'd just keep swapping. But it worked really well because we thought of a hack that I could do bottles by the side of the bed, so didn't have to get out of the bed. There's just little things like that that can make it easier. But in terms of like emotional and things like that, I think it's just thinking about all the scenarios that might play out, how you would feel about them, and just preparing yourself emotionally. Because I think actually that for me is the hardest part and the place that I kind of learned the most about myself is kind of navigating some of those emotional challenges rather than the physical challenges. Okay, thank you. Yeah. So we've covered the research side of things, which I do think is really, really important because quite often, particularly with different people, whether it's OTs, they may not have the knowledge either. So often we do have to be the experts and say, no, there is this, there is this piece of equipment or whatever exists. But I think it's funny, it's almost similar to what I would say to any new mom, there's no one way of doing things. And I think we have these, as we grow up, we have these kind of images of what motherhood looks like and what being a new mom would be. And, you know, you might go to toddler groups and you might do this and you'll take your baby out for a push chair walk and all these things. And actually when you've got anything, any sort of difficulties or challenges to overcome, these things go out the window. And I felt like at the beginning of my first child I was constantly trying to almost conform to normal images of motherhood. And I was then aware of the things I couldn't do because that was what other mothers were doing. But actually with my second child, I was much more open to, no, we don't do that. What our normal was and the things that we had to do and the adaptions and, you know, just even little things like we would play with the children in the push chair rather than being on the floor because I couldn't get on the floor or get them back up. And so many little things that we did that if somebody else looked in on our family, they would probably think, how odd, how bizarre. But it was just our new normal and it worked and we found a way of doing everything. And I would say, you know, when their children are younger, they do need quite a bit of physical kind of help, or it is quite physical, but as they grow, that just becomes less and less and it's more about that support emotionally as a parent and listening to them and them just feeling loved and all of that. And if you've got any sort of disability, you can do that as well, if not, you know, better than anybody else, I would argue, because that's what you're focusing on. And it definitely gets easier as well over time. I think personally, mine are now 15 and about to turn 12 and it is just so much easier. So when they were younger, if I'd had a bit of a looking glass and look forward, it would have filled me with so much more hope as well in those difficult times. Definitely. That's really lovely. So sort of to end on a high, what are the three best things you would both say about being a mom would be your top three? Damn, threw a hard question. Yeah, that is hard. I think going off of what you just said, really, that this age that mine are now, like, Mason's nearly 8, Hunter's nearly 5, they're just so much more independent. And all the worries that we have are just hormonal, emotional, those kind of worries. Figuring that out with two young boys is really tricky, but it's also amazing, you know, getting all of their phrases, the new things that they say that they pick up from school or, like, their little personalities and their attitudes and seeing traits of yourself in them as well and how they are. I think one of the proudest things I've done recently with Mason, my oldest, is, for the first time he had at school somebody say, oh, your mom's in a wheelchair. And that was something that I always dreaded. I always thought, oh my God, like, I'd never want that to happen. But actually, how the school navigated it was amazing. And because I do a lot of work around, you know, training and advertising and representation, I went into the school and did an amazing session with the class about disabilities and how, you know, disabled people are seen within society. And you think of that in a group of year twos, you think, that doesn't sound like it's gonna work, but they're smarter than you think. And it was absolutely incredible. And the questions, I mean, one of the kids still comes up to me on the playground and gives me a hug. It was wild just to see their reaction and to understand that all this stuff that people have, like, the negative connotations, it's all learned stuff. So teaching them at an early age and seeing that they understand more about disability, that was huge. But also my son will advocate for me, and like I say, he's only in year two, but he understands injustice and he understands how to make things fair for more people. So ultimately, we're raising kids, we're raising the future so for them to have a better understanding of how to help anyone, whether they're disabled or not, that's like something I'm mega proud of. And one of the things that it makes me happy is to see having kids growing up. Yeah. Thank you. Okay. What would I say? I think being a mother is something that you absolutely can do. So it's one of those things that I love because you can do it, and you can do it really, really well. Have an SMA, so there's no reason that you can't, so that's really positive to me, having that something that you can do well and the same as everybody else. I think also that being able to be that role model for your children, I think Kelly touched on. My children have grown up with very different experiences that I can absolutely see really, really helps them in the wider world. Like Kelly said, around kind of equity, but also just being able to problem solve and find other ways out of situations and doing things differently. They know that if we can't do some... Sometimes as a family we've not been able to all sit together because there's only one wheelchair space and a carer, but we've just found different ways of doing everything. So it's by having to do that regularly, that goes into their life as well. And they're used to that. And I also think probably enabling the support team around us to have those lovely relationships with our children as well. It almost is that thing that at the very start I felt was really hard to do and let those people in. But now fast forward in the time, I can see that so many more people have been able to be part of my children's life in a lovely way to help them grow as well, which is a real sort of privilege for them as well. Like both sides, the children and the people that are part of their lives too. That's really lovely. Thank you. Are there any last things either of you want to add before we wrap up? Just for me, that I think we've talked a lot today about like the, you know, physicality and the research and stuff. But just to say that it's not doom or gloom, it's absolutely lovely being a parent. And if that's something that you want to do, it absolutely is possible. There's lots of people out there that have done it. And just if you want to reach out to me to chat, that's absolutely fine. I'll give my details. You can hook up with me and ask me any questions. I love chatting to people. So, yeah, just, I think that would be it, really, from me today. Same. I'm happy to support anybody and everybody. Just hopefully you feel more hopeful after listening to us. And there's a way around everything. But it's also okay to not feel wonderful all of the time as well, because sometimes that's just being a mom too. There are hard times and there are wonderful times. And don't ever feel if you're finding something a challenge that you shouldn't because it's just about getting that support to get through it and there's loads of people out there that are willing to share and help. Thank you. Well, thank you both for coming on here today. It's really lovely chatting to you both. If anyone does have any questions about any of the things we've discussed, there'll be an email address in the little bio and we will see you again very soon. Thank you. You've been listening to the Living With SMA Podcast. We hope you can join us again next time. But in the meantime, don't forget to like and subscribe so you don't miss an episode. You can find out more on our website at smauk.org.uk.