"The Cracks That Let the Light In" By Jessica Moxham

Jessica Moxham lives in London, UK with her husband James and three children: Ben, Max, and Molly. Ben is disabled - he uses a wheelchair, communicates non-verbally, and is tube-fed. After time spent living in the Middle East, Jessica returned to the part of London she grew up in after Ben's birth before having two more children. Family life is as noisy as you'd expect with three children. She loves reading books to her kids, visiting museums, and they all enjoy family film night.

Jessica and James Moxham with Ben, Max and Molly.

Jessica is an architect but since the birth of her children has been writing about what she has learned from her disabled son and her book, The Cracks That Let the Light In, was published earlier this year. The family lives in a house that Jessica designed to be accessible to Ben.

What is her memoir about?

Jessica's blog www.son-stories.com chronicles the intricacies and joy of raising her children. In Episode 43 of the Raising Kellan Podcast, Jess and I talked about challenges such as the language of disability and access to the environment. Her experience of being Ben's mother and design gives her astute insight into universal design and how to create a space that elegantly combines design with medical necessity. This excerpt from the podcast was one of those "sit back and take stock moments".

Having a disabled child isn't a tragedy - it might sometimes be complicated but it isn't inherently bad or sad, and you don't need to apologize to me for my child being disabled. We lead full, varied, happy lives, and the problems Ben experiences are as often to do with people or places than they are because of his body.

Jessica Moxham

Special Thanks...

Louise Brogan https://louisebrogan.com/ for telling me about Jessica's book and thank you Jessica for giving voice to challenges faced by Ben. Jessica's book is available on Amazon and a must-read on any parent's list.

Transcript

Marsh Naidoo (00:10):

Hi guys. Welcome to the Raising Kellan Podcast. I am your host Marsh Naidoo, Raising Kellan is a digital platform that curates resources for special needs parenting. The opinions expressed on this podcast is not intended as medical advice. In today's episode, episode number 43, we chat with Jessica Moxham, who's recently published, memoir was released earlier this year in the UK. The book is titled, "The Cracks That Let the Light in". This episode was brought to you by our community sponsor, First Citizens National Bank,

Marsh Naidoo (01:01):

Jessica Moxham is a writer and architect from London where she lives with her husband and three children in a house that they have adapted for their family. Her eldest son Ben, is disabled and Jessica writes what she has learned from being Ben's mother. Her memoir, The Cracks That Let The Light In was published earlier this year in the UK. Welcome Jessica.

Jessica Moxham (01:32):

Thank you so much for having me.

Marsh Naidoo (01:34):

Listen, your book is an absolute gem and I enjoyed reading it so much. It absolutely resonated with me. And I'm wanna share more about the book with our listeners this morning. As a little bit of a backstory Jess, just to create context, would you kindly tell us a little something about your family?

Jessica Moxham (02:04):

Yeah, of course. Thank you so much. So I live in London with my husband and we have three children. So Ben is 11, Max is just about to be nine and Molly is five. Ben is our eldest son and he is disabled. So he is a bright sparky, 11 year old, about to go to what we in the UK call secondary school. And he loves Marvel movies and stories and swimming but he has cerebral palsy and we help him with almost most aspects of his day to day life. And otherwise we're just a busy family of five kind of trying to keep on top of things like most busy families are.

Marsh Naidoo (02:54):

I hear that Jessica in your book you talked about the journey that you travel not only with Ben but with your other kids as well. And what I found remarkable was some of the similarities, especially in the early stages where you talked about co-parenting with the medics - medical professionals. And can you share a little bit with us as to how that relationship with the medics changed as time moved on and has now grown older?

Jessica Moxham (03:38):

I think

(03:40):

So much of this is hard to know how much of it's about Ben and how much of it is about that he was my eldest child. So I think parenting is always a shock. <laugh> the first time to everyone no matter how complex or relatively not complex your child might be. So of course it was a shock to us having a baby and it was probably always going to be a shock of some kind. But Ben was very ill when he was very first born. He was in hospital for a bit and then when he came out of hospital he was physically quite well, but he had a lot of feeling difficulties and other kind of things going on, which meant that we saw a lot of doctors and we also saw a lot of, I think I hadn't realized until I had been how much of our lives would be about therapists kind of not just doctors, but nurses and speech and language therapists and physiotherapists and a whole kind of team of people.

(04:35):

And those appointments took up a lot of time, but also it took, I think a lot of it was confidence. It took me a long time to really feel like I knew more than anyone else did about my son. And so over the first couple of years probably of his life, I learned what to do <laugh> and kind of got better at doing all of those things and therefore I got more confident in being able to, I guess, advocate for him and also make decisions for him and be able to feel like I was more working with the medical people who he saw rather than benefiting from them telling me what to do in a way I probably like anything, we saw some really excellent, helpful people who really helped us a lot. We also saw some people who maybe weren't as helpful <laugh> in those kind of early years.

(05:31):

And so I think that really changed over time to where I learnt enough and got to a point where I really had confidence in myself that I felt like I could make the best decisions for him in collaboration with the people around us. And probably that was particularly helped by the birth of my second son who, he was actually very ill when he was first born, but he got very quickly, very better. And then I just realized how straightforward it was with him and how uninterested anyone was in him because he was straightforward and that I could keep him alive and help him thrive. And actually I knew what to do with him and that kind of, I think made me reevaluate some of the things about Ben that I had thought were medical but actually increasingly started to feel my instincts would be right on. One of example of that was feeding. So we have been feeding him, he has always been cheap fed and we have been feeding him through his gastrostomy through a pump. And then I started giving him blended food through his tube. And I think I really had the competence to do that because I was starting to think about weaning my second son at the same time. So yeah, that was a kind of interplay there probably of having my second child as well.

Marsh Naidoo (06:46):

Jess, I wanna touch on that quickly. You talked about feeding Ben through is it a PEG TUBE

Jessica Moxham (06:55):

She Yeah, yeah, it was a peg when it was first. So he had an NG tube for a while, then he had a peg into his tummy. Now it's a gastrostomy balloon so we can change it. It's not a kind of fixed thing, but it's still in his tummy. It's a tube in his tummy.

Marsh Naidoo (07:10):

But what I recall you discussing was with his dietician and the fact that, you know, you wanted to explore actually feeding Ben typical foods or foods that other members of the family ate through his tube. Can you, and the struggle that happen in terms of wanting to get collaboration with the medical staff and you then deciding to make that decision and the confidence you had in moving forward with that decision?

Jessica Moxham (07:47):

Yeah. So I guess that's a kind of that really is the nub of this whole issue. So I had read and heard about other parents of children who were cheap fed using blenders to puree up food and making it thin enough that you could then push it through the feeding tube instead of these prescription milks, which is what we had been feeding him before. Ben had always had really bad reflux which had made him quite miserable for a long time and had meant that he'd had chest infections and there was just a lot of vomiting which wasn't very nice mainly for him. And I had read about other parents feeding in this way through the tube, which had reduced the amount that their children vomited. So I thought that was definitely worth a try because the things that we had been trying hadn't been helping particularly.

(08:39):

So I read about it and I spoke to a dietician and the dieticians essentially said that there wasn't enough research to prove that it was a safe way of feeling and they were worried about hygiene and about the calories of the food he'd be getting and whether it was nutritionally complete. And of course all of these things are proven with milk cuz there's been a lot of research done into these milks and what's in them. Cause they've been made in a factory, someone so they didn't feel that they were in a position to recommend that I fed him that way. But when I spoke to doctors, they were a bit more pragmatic and they were like, well, it sort of sounds sensible. It doesn't sound like a completely ridiculous thing to be doing. And because I was weaning my second son at the same time, I kind of thought, well, I'll try it.

(09:23):

And I started safe. So I used baby food at the beginning, pure baby foods, which not only I knew they would be smooth enough that they wouldn't block the tube, but also I really felt like I'm literally feeding this to my other baby, so it must be safe for children. And I guess I started like that so that if I was questioned, I felt like I could really justify myself. And then that went okay. So then I got more and more ambitious in what we fed him and it worked. He started vomiting less and it took a long time and his weight has been a real work in progress, but he is now a really healthy weight. I mean we've now been doing it for a long time, so he's 11 and we started doing it when he was two or three. So it's been years of that, but it worked and therefore people had to agree that it was a reasonable thing to do.

Marsh Naidoo (10:15):

The theme that runs through your book that I've enjoyed so much was your guy sense of adventure all the way from when you know, and your husband lived in Qatar and then moved back home to London and how you are still maintained that sense of adventure with your family. So kudos to you for doing that, but also I wonder, I really think that that's something that, let's explore that. What has that experience been like for you and your family? Jess? How have you all navigated traveling?

Jessica Moxham (10:56):

I think it's a tricky one because I don't feel, thank you for thinking of us as an adventurous family, but I don't think we've been ad as adventurous as I have liked us to be. And I do, I have a friend whose son is also disabled and she's traveled a lot with him and I feel like, oh, I should be doing more of that. So it's a tricky one. We came back to London after Ben was born partly for medical reasons in that we were kind of familiar with services in the UK in a way that we weren't so much aboard, but also because our families are in London and we just realized that why would we move thousands of miles away from these people who are going to be really helpful to us, both emotionally and practically, No, they're gonna help us look after our children.

(11:47):

So that's kind of why we came back. And we have their, I think it's partly it's a time thing when Ben was very small, my mindset was completely different to how it is now. So in the first probably year or so, I was just keeping on going and trying to do the best for this baby who was really unhappy a lot of the time and therefore I was quite unhappy, a reasonable degree at the time and we weren't getting enough sleep and it was just really difficult. So it's taken time, but I think over time we then learn how to find the joy in things and learn how to help Ben be as happy and fulfilled as he could be. And some of that is getting out and doing stuff. So we're very good at getting out and doing stuff in London and we have taken them abroad but only in Europe.

(12:33):

So actually we haven't done the kind of traveling that my husband and I did pre-children with Ben. We have done it a little bit with our other two children and I think that is a struggle that each parent, I've got friends who feel like they either do things as a family or not at all. And then other friends who split their family up so they each do what suits to different kids and we probably do a mixture of that. So we have done some traveling and because we're very lucky to have our families in London, we have my sister and my brother-in-law or my parents or my parents in-law can move into our house and be with Ben and we do stuff with the other kids that wouldn't work for Ben. So yeah, I think it's one of those things that's a constant work in progress of working out how to do the best for everyone.

Marsh Naidoo (13:24):

Your writing style is so easy to follow and the thing is, even though you write to all your experiences of being a mom, that is raising her son, that is disabled I think your writing style actually will appeal to any mom. And so guys that is "The cracks that let the Light In" which she's available on Amazon, but it's just not sure memoirs J you also blog@wwwsunstories.com. How did that come about? What was the motivation for the blogging?

Jessica Moxham (14:11):

Yeah, so I was really lucky to do a course when Ben was very small. So I think I started doing it when he was three and it was a course that was run by other parents of disabled children and disabled people together as kind of an education in disability history and advocating and support for parents. And through that I think that was one of the things that really shifted my mindset from it being a mindset that was really focused on trying to I think I would say now sort of fix in inverted Ben and seeing him very much as a kind of medical project that we were trying to help. And it shifted me to thinking more that Ben was Ben and he was gonna do the things that he was gonna do and it was our job to make his path through the world as easy as possible and to help facilitate him doing the things that he could do and try and problem solve when things were tricky.

(15:22):

And so as I was doing that course, I was changing my mindset about it and I realized that I spent so much time explaining to other people's things <laugh>, right, that I thought were quite obvious. So people were often asking me if he was going to to school for example. Cause I think they sort of assumed that somehow because he was disabled, he wouldn't go to school or they were asking questions about him, whether he could enjoy books and he loved books. And I just realized our perception, our class myself before I have Ben about disability is so limited that I felt like then people had very little understanding of what Ben was like and therefore what being his mother was like. So my, I've started writing the blog really in an attempt to try and explain, Hi guys, look at our life. We're doing really fun stuff. And the challenges, of course there are challenges and some things are really difficult, but those are as much to do with the people around us or not having the support or the building, not having a lift or whatever it might be. Some big some small challenges as they are to do with Ben's inherent body. So I kind of started writing the blog partly about that and that went on for a couple of years and I really enjoyed writing in that way. And so then I wrote more. And then out of that came the book

Marsh Naidoo (16:40):

You so aptly write about the challenge of transitioning from being Ben's primary caregiver to back starting your finding your own voice and transitioning back to work and the challenges that surround that as well as finding a point of comfort from transitioning to being Ben's mom, but also finding your voice as your own person. Can you talk a little bit about that journey or that transition?

Jessica Moxham (17:17):

Yeah, I think as with any life, there have been kind of phases of it and during that first year where I was learning not only to be his parent but also his therapist and his nurse and all of these other things and it was very intense and I think I needed to do that. And my husband was working at the time and so I was at home a lot and I had always intended I trained as an architect and had been working as an architect and it had always been my intention to go back to work after I'd had my baby. As it came up to a year, I kind of started thinking about that a bit more and I was very lucky that I had a company in London who I'd worked for before who wanted me to go back to work for them.

(17:58):

But I also started realizing actually I really needed it for me as well, <laugh>, that it was so intense being at home all the time that actually I needed to be doing something else a little bit of the time. And also I thought it would be good for him to not be with me <laugh> all the time. Yes, <laugh>. So kind of I felt like that was worth trying to see if that was good for all of us. And it really was exhausting the logistics of it, of getting him to nursery and arranging all of it and emotionally exhausting that kind of handing over and trusting or learning to trust that someone else could look after him and do all the things that needed to be done from him was really difficult. But I really enjoyed then being at work and adults using my name rather than calling me Ben's mom and being able to walk up staircases without having a buggy and all these kind of things that were both small but also big kind of felt.

(18:59):

And Ben was at nursery and he was okay. It took him a while, settle in, but he liked it and he had people around him there who were really caring and really got to know him and I think that was a really important thing for me to do at the time. And later after I had my second son, I didn't go back to work because then by that point I felt like I really did want to be at home. So I think these things just depend on what stage you are at and what's best for you and your kids at the stage that you are at. But certainly when Ben was one, it was good for all of us that I went back to work part-time.

Marsh Naidoo (19:35):

Disability is often defined as a barrier to access your environment with your skill set as a architect. Can you talk a little bit about the challenge of, first of all being able to find a home that would work for the family and then how you went about adapting your home Jess?

Jessica Moxham (19:59):

Obviously being an architect is hugely beneficial if you can adopt your own home just because I had a really solid idea of where to start. We live in London and we live in an area of London, which is very close to where I grew up. So we live close to my parents, but obviously London is dense and property suitable for disabled people are often have quite a large footprint and not having to go up and down levels and that's just not how houses in London work. So we were looking for a long time before we could find a house that I thought could work for us. We were very lucky that we were in a position to be able to buy a house that could work for us. And essentially I just looked for a house that I knew I could get a lift into and the rooms were big enough and then I knew everything else I'd be able to work out around that.

(20:55):

I feel quite passionately that design, good design is about problem-solving and is about taking an issue and working out the most elegant solution to it. And making a house accessible is just like any other design problem. You just need to concentrate on it and think about the best solution. And a lot of, I dunno what it's like in the States, in the UK a lot of adapted properties or properties that have been adapted are not beautiful. They're done in a way that is often very medical and are very practical but they're not elegant design solutions. And also often the needs of the disabled people or the disabled person in a household can be prioritized at the point that that's the most obvious thing you see, you kind of walk into a house and you're like, oh right, a disabled person lives here because you can very visibly see all the adaptations that have been made for them.

(21:52):

And because we have two younger children and the kind of ethos of our family is that Ben is one of our children, but we have three children and the family dynamic is such that there's important that everyone feels like they're a kind of equal member of the family. So I worked really hard to make our house a house that works completely for Ben so he can go almost not every single room, but there's one room that he can't go into, but he can go almost everywhere, including his siblings bedrooms and my husband's bedroom. But that when you walk into the house, it takes people a while to kind of realize that it is fully adapted, that there is a ramp to the front door that we haven't left, that the doorways have all been widened that we have hoists in the ceilings, that we have everything that we need.

(22:46):

But isn't the thing that the house screams? The house screams, I hope <laugh> family house, it's a house that five people live in and is bashed up as a result because there's been a lot of playing and a lot of bashing into walls. But that's what I wanted. But it works perfectly for Ben. And the thing that I think is most significant about that is that it wasn't until we moved into our house after it had been adapted that I realized how much work was going in on a day-to-day level of us trying to make Ben's life work despite the houses we were delivering in. So we were often having to fight against these houses that when Molly was crawling, I couldn't leave her downstairs while I carried Ben upstairs because she wouldn't be safe. And all this kind of trying to work out the logistics of which child was in which place at which time was very difficult. And now all children can be in all spaces whenever I need them to be if I'm on my own with all three children. And that's an incredible luxury and privilege, but it's an amazing experience.

Marsh Naidoo (23:53):

If I had to kind of narrow it down to perhaps one last question that I wanna kind of ask, it's gonna revolve around the language of disability and I don't wanna give anything away about your book, but there is a paragraph. Would you mind if I read that?

Jessica Moxham (24:14):

Of course. Yeah.

Marsh Naidoo (24:16):

So this is what I've taken away and this is what speaks to me.

Marsh Naidoo (24:30):

I think that much of people's discomfort with disability and their inability to talk about or to disable people in a way that isn't patronizing or dismissive is because they don't have the language. Many adults have little experience of talking to disabled people and are not comfortable with which words they are meant to use. If adults don't use straightforward language to talk about disability with kids and rather refuse to discuss it or use opaque unfamiliar words, it reinforces the idea that there is something to be scared of or intimidated by, which is the way most people have grown up. When this happens. Children think that there is something awkward that parents don't want to discuss and they associate that discomfort with people rather than the language. But kids are never too young to be given the words to describe different kinds of people. We have these kinds of conversations with Molly all the time and when someone ask her about Ben, she says, My brother is disabled.

Marsh Naidoo (26:03):

But can you give me your thoughts and what your feelings are pertaining to the language of disability?

Jessica Moxham (26:12):

Yeah, so I guess this is another kind of learning curve for me over Ben's life, which is that I came to realize that the word disabled has been, I guess reclaimed by the disabled community and has come to mean, as you said earlier that the barriers that are put in the way of disabled people in either the environment or in society rather than it being an issue of the individual impairments of each person's body. And if you start to think about disability in that way, then disabled the term disabled is not a bad word, it's not an insulting word, it's just a statement of fact cuz that's the way that Ben moves through the world is as a disabled person and he is treated as a disabled person. And once I came to realize that, I quite confidently described him as disabled. And that is very clear and very, that's something to be proud of. It's not a thing for people to apologize to me about.

(27:20):

And so I think that's a really important thing to realize. And I think that's also important to realize because you can't talk about the difficulty of something or really talk about anything in any great depth if you don't have the language to describe it. And there are lots of things that can be tricky about having a disabled child and of course being disabled, although I cannot talk to that as a personal experience and no one is helped by us not talking about those things clearly. So I want Ben to have a sense of who he is that is formed out of who he feels like he is rather than just being formed out of the misconceptions of other people. And also I think it's really important, for example, for his siblings, for them to have clear words to describe who their brother is and what he's like. And there to be no taboo about that. There's nothing to be ashamed of here. There's nothing that we feel embarrassed about or that we can't talk about very openly. Ben is disabled and that's fine. That's not something that we feel sad about or that there needs to be. We need to somehow hedge our bets in our language. We can use very clear language to talk about that.

Marsh Naidoo (28:36):

Jessica, it's been an absolute pleasure talking with you. If folks would love to get a copy Jessica's book is available on Amazon. She blogs at son stories.com and Jessica, any other ways that folks can reach you?

Jessica Moxham (28:58):

So I'm on Instagram and Twitter as Jess Moxham

Marsh Naidoo (29:07):

All right guys.

Marsh Naidoo (29:10):

Guys, thank you for listening to this podcast. And remember, Raising Kien is now available on YouTube, so be sure to check that out and subscribe. We would really appreciate that Jess's book is available on Amazon as well and is definitely an awesome read for any parent. Thank you to our community sponsor, First Citizens National Bank, and a special shout out to Louise Brogan at the podcast, linking in with Louise. I met Louise through LinkedIn and I must say she was the one that put me in contact with Jess. Remember that you can contact us through raisingkellan@gmail.com. And if you don't mind, a rate and review of this podcast is highly appreciated. Until we see all the next time, remember, get to the top of your mountain. This is Marsh Naidoo signing off.