A father and grandmother share differing experiences of 10-month-old baby's type 1 diagnosis with Sharon and Lewis Harrison-Barker

Episode Transcript
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Speaker 1 (00:00):
This episode of Type one on one is kindly sponsored
by dex Com. More on that just a bit later.
What I will say now is that we have an
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on one and you can find the link in the

(00:20):
episode description. Ah Hi everyone, and welcome to Type one
on one, a podcast that delves into the obscure, complex
and challenging world of life with type one diabetes. I'm
Jen Greeves, and each week, with the help of some
brilliant guests, I'll be showing that there is no normal

(00:41):
when it comes to handlink this whopper of a chronic condition,
because we're all pretty much figuring out the messiness of
day to day life with diabetes as we go. And
most of all, even though it doesn't always feel like it,
we are absolutely not alone. We've got a Type one
on one first you today, across more than one hundred

(01:02):
different guests, I've never spoken to the grandparent of a
child with type one diabetes, much less with their child
at the same time, so I'm delighted to introduce two
guests to you today, Sharon Harrison Barker and her son Lewis.
Lewis's son Marty was just ten months old when the
entire family were plunged into every parent's nightmare back in
twenty seventeen. Marty was rushed to hospital in severe diabetic

(01:24):
keto acidosis, and, as Sharon recalls in her own words,
the day that not only Marty's life changed forever, but
my son Lewis and his wife's steps two. I remember
that emotion with such clarity as I sat and watched
the chaos. So we're going to talk a little bit
about your story, but also how Marty is now, how
you guys are doing as a family unit now. But

(01:47):
welcome both of you to type one on one.

Speaker 2 (01:49):
Hello. Thanks thanks to having us, Jan, thank you so much.
Thanks for joining me.

Speaker 1 (01:54):
Obviously, that is a heart stopping introduction even to read,
let alone to experience. You wrote to me Sharon and said,
you know, I think the grandparent perspective is one that
would be interesting to hear. And it's absolutely true because
there's so many parts to this when you're plunged into
this world but also ongoing as it shifts the family dynamics.

(02:15):
So what was it that made you sort of want
to talk about this, Sharon.

Speaker 3 (02:20):
I've been trying since the diagnosis. You know, we were
the same I think of any family the day before.
I didn't really know the difference between type one and
type two. And I'm a bit embarrassed to say that
because we've got family members that it became really obvious
very quickly because of their reaction to Marty's diagnosis that
this was going to be very substantially life changing, where

(02:42):
they've kind of kept that hidden from us as a
bit removed. So we've got I've got a niece who's
diagnosed at eighteen, and there's somebody on Steph's side as well.
Lewis can talk a bit more about that, but I
have really had no idea, so from that day of
starting to just read and read and read and to

(03:03):
try to understand as much as I could. I've been
involved in just kind of Facebook groups of grandparents of
and it's particularly American based, but they give there some
kind of advocacy and people share their stories on there.
So a couple of times where I've had Marty for

(03:24):
a week or something like that, five days or something
where Lewis and Steff have gone away. I've kind of
used that book saying kind of grandparents versus typewe and
kind of shared my day on there, and so people
willing to share slightly differently on there than they do
on the parent groups, and so I kind of stepped
forward to that stuff, and I know that Louis would
be able to talk more, but I know that Lewis
found those groups quite difficult and kind of stepped away

(03:48):
from them. Not the grandparents ones clearly, but the ones
that were parents, because they're particularly female, much orientated, I think,
and they can often be a bit of an anti
dad narrative in some of those groups, particularly where there's
people that have a single parent or parents that have
split up. So I know that that was challenging at first.
So I've kind of stepped forward, step forward to try

(04:08):
and learn and understand a bit more. And me and
Louis both work in the university, so come across maybe
information that other people might So I've always tried to
keep up to date. I'm often sending Lewis links and
will often talk about it, and just in the New
Discoveries and you know, things that are going on, so
I've just kind of engaged in the community, I think

(04:30):
maybe maybe a bit more than other grandparents have.

Speaker 1 (04:34):
Yeah, incredible to hear, and I'm sorry Lewis that you
found that. That's an interesting point of view. And what
was it about the groups that you found you needed
to step away from that didn't really resonate with you
so much?

Speaker 4 (04:48):
Yeah, I think I try to be an optimist. I
think that's how I poked with things, and personally, I
found the groups that I ended up being added into
were not optimistic, and especially when Marty was ten months
old and there's all of those challenges that we had,

(05:11):
Like for anyone, it's going to be a challenge for
your child to become Type one diabetic, your world does
change overnight, but for a ten month old in particular,
you've then got there are significant additional challenges on top
of that. And I really needed to be surrounded by
optimism because I was really struggling with my mental health

(05:31):
at that moment, and so logging into these groups and
seeing some of this anti dad narrative, like it wasn't
all there, but it was it appeared to be significant
because obviously I'm going to notice it more than someone
else would. There were quite a few posts sometimes where
people were posting about the anniversary of the death of

(05:53):
one of their children from Type one complications, and I
get it, you know, we need to These people want
to remember the legacy of their children and they need
to express that somehow to people who are going to
understand it. But when I've got ten months old that
I don't know what his future is going to be, like,
the last thing that I want to be thinking about
is the possibility of him dying early. So I really

(06:16):
didn't need that. And there were also just other little
bits like I picked up a cookbook one day. I
really love cooking, and I got a cookbook that first
Christmas or Birthday or something. It was a Jamie Oliver
cookbook and at the end of every recipe it had
the nutritional information, so it said how many carbohydrates proportion, which,
as someone still getting to grips with carb counting, seemed

(06:37):
amazing to me. So I shared in the Facebook group,
look at this thing. I think it's really cool. Straight
away I had people saying, no, I will never listen
to Jamie Oliver because of this one thing he said
about Type two diabetics at some point or equipment to
type one and it was just people instead absolutely hammering
this post. But I was just trying to share something
that's positive and helpful. I have a hateful relationship with

(07:03):
social media anyway, so it didn't take much for me
to just lead all of these groups and think, you
know what, personally, they might be helpful for some people,
but personally are much better off with that.

Speaker 1 (07:13):
Yeah, and good for you for having that clarity and
awareness that this wasn't serving you and what was an
especially difficult time of course, to know that this isn't
something that you needed to pile on top as well?
Has it been helpful to have Sharon as that kind
of buffer of filtering the information and taking it, you know,
the initiative to find what works for you guys as

(07:35):
a family, to kind of share things to you in
a way that that is more helpful like that dynamic.

Speaker 2 (07:41):
Has that been useful for you?

Speaker 1 (07:43):
Yeah?

Speaker 4 (07:44):
Absolutely. I Mean most of what my mum sends me
is we're both data nerds deep down to our course,
and most of what my mum sends me is new
research that's come out, some new data that's been gathered
from X y Z. It's not so much the things
that are being shared on the Facebook groups, which you know,

(08:04):
are far more personal stories and stuff like that. So yeah,
that's definitely helpful because it feeds my little nerd brain
as opposed to my anxieties about being a parent and
what things are wrong and all that sort of stuff.

Speaker 1 (08:18):
Yeah, absolutely, I can completely understand why that would be
the case, and it really speaks to I think, when
you are plunged into this world that is so unknown
and it is so new, and it's so scary and terrifying.
There is now a wealth of information out there, but
within that I think to be discerning about the bits
that are going to help you and the bits that
are less helpful in that moment. You know, That is

(08:42):
I think good advice for anyone newly diagnosed, anyone who
is in a family with someone newly diagnosed, you know,
And it's important to kind of be aware of that
for yourself, because I don't know if you could tell
me a bit about when you are newly diagnosed or
in that world, you know, the search for information, I

(09:03):
think it is. It's a very natural thing, isn't it,
because this is unknown and you want to know what
it means. And you want to know how to move forward.

Speaker 2 (09:11):
I guess is that something that you experienced.

Speaker 4 (09:15):
Yeah, I mean, well, for me, it was kind of
I was trying to not seek any information, really was.
I had the big books that were given to me,
and I read them and I reread them like the
stuff that was given to me by the diabete specialist
nurses and the dietitians on that first day. But I
was in mental health shutdown, so I wasn't going out

(09:38):
and actively engaging or looking or anything. I was in
pure self preservation mode at that point and only dealing
with what's in front of me, Whereas I know that
my mum being that sort of half a step away,
was I mean, you bought every book you could possibly find.

Speaker 3 (09:57):
Yeah, I was, you know, I remember clearly that that
first night because Lewis's wife, Steph, was still breastfeeding, so
it was hard for her to comfort Mighty because they
were both looking to each other for something different, look
for food, rather than just for being able to just
lay with him. So I was laying with him, scrolling,

(10:17):
you know, finding out information as much information as I could,
and as Lewis said, in some ways I think we
afterwards when you start looking back and starting to think
about the positives. We are both kind of data people,
and so there was a part of Type one that
was quite exciting in terms of that the calculations understanding

(10:37):
the carb County really saying yeah, we can do that.
I don't think we have I don't think. I don't
think ever for a moment, I can't do this bit
of it. I thought I can do this bit of it.
The technology, the you know, the set changes, the calculations,
all of that was something that was really going to
lean into and try to be a support because I
absolutely recognized that if I didn't do that, Lewis's deft

(11:00):
world was going to be much smaller because you can't,
you know, if Louis was sick, clear when he was
a child, I could have just knocked next door and
said could you just watch him? For that, I've got
to go and do something that. You know, it's obvious
very quickly that that just wasn't going to be possible.
So I needed to gather as much information as I
could to be able to be the person that they
could say, can you And that's kind of how it's continued.

(11:24):
But that was all based on that early data gathering
and information gathering, so I was just trying to soak
everything up and also trying to almost seek out people
in my personal group, people at work and other places
where they might have mentioned that one before. And that's
so just by chance at that point, my ea, my job,
her son had top one and he was an adult son,

(11:48):
and we talked about it a lot, and he'd had
some very severe complications and has had a kidney transplant
subsequent and panclyst actually subsequent to to all of this happening,
and suddenly I was obviously all ears and she was
all ears in terms of that understanding. We were also

(12:09):
thrown into it quite in a big deal in work,
because so we both work at the same university, and
Marty was diagnosed in the nursery of the university it
was and his first day at nursery, and so it
was kind of it was kind of shared as a
community in a positive way as far as I was
in a positive way. So the whole university community kind

(12:30):
of wrapped their arms around us to some degree and
has continued to do that. So me and Lewis do
this type of talk quite regularly, fairly regularly in terms
of parents that are cares and that type of advocacy work.
So yeah, I said, there was lots of and we
do just by chance, the university does some Type one
research on neuropathy, so there was other avenues for us

(12:51):
to kind of get and nerdin us out, but also
to try try to be in a practical way.

Speaker 4 (12:56):
Yeah. Just this week, you know, two days ago, I
was stood in front of a class of dietisians and
talking to them about what it's like to be a
parent of a type one diabetic in the things that
particular as a child, the things that we have to
deal with and that they have to teach us as dietitians,
and you know that you're going to be having that
conversation at the worst moment of that person's life. And

(13:18):
the week before I was having a talk with a
bunch of pharmacy students, talking to them about what it's
like to medicate a child with Type on diabetes. So fortunately,
being part of a university does, like my mum said,
allow us that ability to go and nerd out, but
also do it in a way that is beneficial to

(13:40):
other people. You know, by this point, I've spoken to
seventy or eighty pharmacy students alone about what it is
like with a child with type one diabetes, which is
a knowledge and experience that hopefully they're going to be
taking into their professional lives and their practice. So yeah,
it's been a good opportunity to be able to do

(14:01):
that for sure.

Speaker 3 (14:02):
Just on that, just on that, this is something I'm
interested in for Marty as he gets older. Is eight now,
so you're happy to talk about how he's doing and
talk all about a diagnosis. But Lewis has also got
might involved in talking to those students From quite a
young age, maybe five or six. He was probably starting
to talk to them and there's something in me is

(14:24):
just kind of and in the end he will have
to make the choices about how much he talks about it.

Speaker 4 (14:28):
You know.

Speaker 3 (14:28):
At the moment, we obviously talk about his numbers and
we deal with with his with the insulin and Carl counting.
But they're going to come a time where he might say,
I don't want anyone to know, you know, so we've
been quite open about it, but you know, we're going
to have to really start to listen to his wish
about whether he wants to be poor. He scouts to
know whether he wants to be you know. And I
was listening to the latest podcast yesterday, Jen there was

(14:52):
something in there about the first interactions with medical team,
how that makes you feel? And I know there was
a commer shared good ex experience going back to that diagnosis.
This is for me personally. Again, I don't know I've
ever said this, particularly to Lewis, but I found that.
So for example, Marty's first hypo post diagnosis, they over

(15:13):
treated him quite badly, and because of his size, because
it was ten months and they they've given him too much.
And I remember Lewis being quite you know, you can't
do that, you can't do that, and then me thinking okay,
we can't. We're going to have to do this. And
since then once I've had to take him to twice actually,
but once where they were well, why is any stable?

Speaker 4 (15:33):
You know?

Speaker 3 (15:33):
Why is he having hypos?

Speaker 4 (15:34):
Why? You know?

Speaker 3 (15:35):
And I was like, okay, just leave him on the bed.
I feel like I'm in a safe place. I'll look
after him. And I think that general awareness in medicine,
if you just present to A and E or because
we was away from home, presents to ane something that
I think that I probably wasn't expecting. Then you kind
of think when you get to a medical care place,
they're going to know. But now I absolutely understand that

(15:56):
we are the experts to that degree about his care
and that we're having to do that advocacy for him
when we present him even to medical professionals.

Speaker 4 (16:08):
Yeah, it's definitely a mixed bag where you go. I
mean we've right now, I'm in North Wales, I'm at
my father in law's house, and we've had a point
where we've been up here and we've had to take
Manty to hospital because all of his equipments failed and
he'd ended up with highky tones and we're worried and
you know, he's not responding very well, so we take

(16:30):
him to the hospital here and terrified that oh my god,
this is like, you know, we know how on it.
Our healthcare team are up here, We've got no idea
at all. It's not even NHS, it's Welsh NHS, which
is a whole different cattle fish in itself. But it
turns out that they have an amazing pediatric diabetes team

(16:51):
here that we had no idea about, and we happened
to be going into hospital just as they were clocking
on to shift, so immediately they were on, they took him.
He was over a ward, he was being treated amazingly.
They knew everything that was going on. They used all
the same equipment and pump and everything that we had,
and it was great. But yeah, there's been other times

(17:13):
when we've taken him to somewhere that's not our usual
hospital but it's local and they just don't know what
they're doing. And that's not a judgment on them. If
they're not trained to, they're not going to. But yeah,
having that, having to have that acceptance, particularly in the
early days that you are now the expert and the
advocate for something that you are brand new to, is

(17:36):
a tricky hurdle to go.

Speaker 2 (17:37):
Yeah.

Speaker 1 (17:38):
That's a tough shift, isn't it. And you've really illustrated
very quickly the sort of breadth and scope and depth
of this condition, not only for Marty in the middle
of it, but yourself, the dynamic as a family, and
then those interactions with everyone else in the outside world,
including healthcare professionals.

Speaker 2 (17:55):
It's just such a lot.

Speaker 1 (17:58):
I do want to get back to where this all
began and the diagnosis, But I think first of all
for you guys. Can I take this opportunity for you
to tell me a little bit about Marty as an
eight year old and the boy that he is, If
that's okay.

Speaker 3 (18:14):
Yeah, I mean I'll go first because it's so easy.
He's just perfect now on hand to lewis.

Speaker 4 (18:20):
Classic grandparents' perspective. That is, Yeah, Marty is a paint.
He is annoying, he is hyperactive, he is hard to
keep focus, but he's a of course, he's all of
those things. He loves being the reason people laugh. He
likes to be an entertainer. He's smart and really into tech.

(18:43):
He's Yeah, he's a great young man and I really
look forward to seeing who he continues to develop into.
It makes me very It makes me emotional thinking now
where he is compared to where he was when I
was holding him when he was and the future that
I thought we were going to have seven and a

(19:05):
half years in the future is not the reality of
what we have, and I'm very grateful for that.

Speaker 3 (19:10):
Yeah, I think that's absolutely right. And from my point
of view, we've tried to be very open and so
for example, we would always bowl us in public, and
you know, do all those things we were lucky, and
I'll let you go on to describe the tech, but
all of that is very open, never never hidden. He's
now doing that himself with some support on the car,
counting that he's pretty self uses pump independently and so

(19:35):
I hope that sets him a good stead. He has
been taken him to Rugby does Sport with ice skating
last week, so I don't think there's anything that that's
held him back on yet. Clearly some challenges in school,
and I'm sure we'll come on to the sum of that.
Starting school was an interesting period, but generally, and we've
also tried to get him a bit involved in Top
one community, so he goes to the activity camps in

(19:57):
the summer and he went independently this year, which he
really enjoyed. Liwisting me.

Speaker 4 (20:02):
Yeah.

Speaker 1 (20:03):
Yeah, it's onwards and upwards and further into the future.
And I'm really hardened to hear how you guys kind
of tackling this as a family with this open communication
and normalizing his reality for everyone around. And also you
know you're passing this on as you said, you're helping
the pharmacists of tomorrow and the dieticians of tomorrow. And

(20:25):
it's incredible to hear. Let's take it back then to
that period of diagnosis, So twenty seventeen, I believe, and
you've got, you know, a relatively newborn baby, and you're
getting to grips with that, Lewis, So can you talk
to me a little bit about what family life looked
like up until the point that Marty started to display symptoms,

(20:47):
which I understand happened very suddenly.

Speaker 4 (20:51):
Yeah. I mean, what the thing is is, we don't
know how suddenly they were. Really you know, when you've
got someone that young, they can't communicate with you. So
I had just had a really bad cold, been really
ill for a couple of weeks, and so we had
just assumed that he was he'd caught that cold. So

(21:12):
he was drinking a lot of water all of a sudden,
because we thought his throat was saw and he was
making you know, more sore throaty noises and he would normally,
which we now know is because he was really dehydrated.
But we thought he was the cold. We thought he
was teething and that's why he was grumpy, and thought
he was going through a sleep change. We thought he

(21:33):
had the reason that he looks like he had lost
weight was because he had a growth spurt. Babies get
fat and then they get skinny as they grow and
they get fat and they get skinny. So we thought
we were in that stage. We had no idea any
of this was going on. So, yeah, like we we
had what every couple with a ten month old had.
We thought that sort of slightly stressful, finding your way

(21:57):
through parenting type life. And then he went and had
his first day of nursery and my wife's first day
back from eternity leave and to correct my mum. I
wasn't working at the university at the time, but he
went in and they he really wasn't well. He was

(22:20):
sleeping and not waking up. And they called my wife
and said, we think he needs to see a doctor now,
and she came over and by the time they come over,
by the time she walked down, bearing in mind that
she was a three minute walk away from the nursery,
he deteriorated enough that they needed to call. In my mind,
so yeah, he was. The paramedics came. They tested him,

(22:43):
so if blood sugar was high. At that point they
knew what the issue was, but what the outcome was
going to be was anyone's guess, and he was blue
light in its hospital. So yeah, it was a big
and sudden change, and we didn't see it coming at all, because, yeah,
if he was old enough that he could talk to us,
he could tell us how he was feeling, he could
tell us at least give us hints about what was

(23:05):
going on. But it was so young that we were
just justifying everything. I can't beat Diabetes wasn't even something
in the back of our head, even though we knew
that those were the symptoms. Because he's ten months old.
It can't possibly be that. It's got to be you know,
it's it's Ockham's razor, right, The simplest solution is the
correct one. But yeah, it turns out that once you

(23:29):
keep justifying everything under that it's you end up with
a much more difficult he made up much further away
from the truth.

Speaker 3 (23:36):
Yeah, from from my perspective of it, Lewis and stuff
had been on a caravan and older. I think they've
been away for a few days. They came back. We
had Marty on Friday nights, which we continue to do.
So we've done that from from very young to give
Lewis and stuff, a kind of date night or some
time off. We'd have him overnight, so they brought him round.

(23:58):
We've got a pets corner opposite use where you can
go and pet farm animals, and normally he would be
really alert, and he just wasn't he was.

Speaker 4 (24:06):
He just looked.

Speaker 3 (24:07):
He looked poorly. But as I said, we thought this
was a flu or cold. And I think probably one
of the most distressing things for us now we're seeing
the photos of because we've got photos of that day
just because of some of the things that we've been doing,
and you look at it and you think, how didn't
we know? You know, I don't think it would ever
quite get over that. And I remember when Lewis and
Stef came to pick him up, I said, I just
need to keep an eye and he's just not quite right.

(24:29):
And there'd been one instance over that Friday into Saturday
where he really had guzzled down some drink and I'd
said to my husband blind me, if I'm in a
pint drinking competition, I want Marty with me, because he
really was down in this drink like it. You know,
it was desperate. As as that first is, butt didn't
connect it I don't. I can say I didn't know

(24:49):
the symptoms then, so I wasn't looking for it. Just
by chance. On that morning against Eeph was working at
unifirst day back, so when they called her into the nursery,
she then called me, which is why I was involved
so early on. So they called her into the nursery,
said that they're going to call the paramedics phone me,
and I was. I was five minutes from there, just

(25:12):
by checking the room that I've only ever been in
once in UNI, interestingly, and it was that day and
by the time I got over there, the paramedics were
just arriving. They they were he when I used to
go in, he would really reactive, smile, you know, be
excited to see me. And he there was it was
nothing nothing, And yeah, as Leuis said, they did the

(25:33):
they did the finger test and immediately kind of said
we need to we need to get in at hospital.
And we knew then kind of what the diagnosis was,
so then it was a kind of practicalities driving the car.
They went in the ambulance. So I was at the
hospital with Steph and Marty uh prior to Lewis getting there.
So that was where that kind of our body experience

(25:57):
kind of happened because I kind of sat I was,
I was helping as much as needed to, but we're
kind of sitting back and just kind of watching it
all going on ahead of me. And there were some
things that day that really weren't good. So that so,
for example, they had to drill into a shimbone without
any anesthetic twice, so that was and again I was

(26:18):
standing back a bit, and Lewis and Steph were up
at the bed with him. So there was just some
things that you just don't need to see, ever need
to see. That probably led to I think some of
the mental health challenges. I think actually, and we've talked
about it a little bit, I think we probably all
had a bit of a PTSD from that experience. But
that was literally a time where I sat back and said,

(26:41):
I'm watching my son's life change and watching my daughter
in law's life change. Had a bit of experience of that.
I had a nephew with cerebral palsy, and so my
sister who's ten years older than me, so i'd have
been twelve or thirteen when she had a disabled some
and again the family really co essed around my nephew John.
I really tried to be a support. So I'd done

(27:04):
I've done respite care and that type of thing for
but I'd seen my sister's life change in that moment
that and as particular as John got older, I saw
I saw her life change and her children's life change.
So I was kind of witness almost witnessing. So I
knew I had to step forward. There was no there
was no choice for me in this.

Speaker 4 (27:24):
It was no point.

Speaker 3 (27:25):
I thought, well, this is Lewis and Steph's problem, and
it's and kind of I was in that evening catastrophizing,
like we're going to I mean, I don't think I've
ever said this studious, but I was thinking, right, we're
going to sell both of houses, We're going to buy
a single house. We're all going to live together because
we're all going to need to support each you know,
you kind of go to that place. And that's why,
as Lewis, it's amazing when you go years later and

(27:46):
you think, okay, look where we are. You know, we've
we've kind of been able to handle this. Yes, So
that first day it was difficult, and then but once
we got diagnosis and they managed to get the lines
in clearly it just kind of got it got better
and better from from that period of it. We've ever
had a day as dark as that since then, not much.

Speaker 1 (28:08):
Lewis, how does it make you feel to hear your
mum talking about that day.

Speaker 4 (28:13):
It's hard because obviously at that point, it's hard to
even think about how I was that day, let alone,
let alone anyone else, because I had completely shof I
was in survival mode. I was in absolute denial, you know.

(28:34):
So even looking back, it's it's almost like experiencing it
again because I wasn't really experiencing it first time. So
then hearing from my mum what she was thinking, what
she was going through a lot of it, I know,
you know, we have we haven't had that chat in
that much detail, but we've had snippets of it. But

(28:55):
it's still hard because you know, it's to know to
know what someone that you really care about to go through,
it's really tough. And then also to make you think, oh,
actually I was going through that at the same time
that wasn't allowing myself to it's sort of a bit
of a yeah, it gets it twice.

Speaker 3 (29:13):
I mean, that's interesting because we obviously come from a
different mindset. I find it comforting that people shared the
experience with me so to be able to talk about it,
and we was all in that same room for hours.
I think we haven't talked much about My husband, Gerald
Lewis's dad is kind of very involved in the childcare,
you know, is a very hands on dad and granddad.

(29:35):
I think he felt a bit left out that day
because he was outside because we was all there first,
and obviously there's only so many people that can be
so he sat there for hours and hours. But I
think probably you feel you also go through it, but
in a slightly different way. You're getting witnessing other people.
Steph obviously had a very mum experience of it, which

(29:57):
again will be will be very different. So we all experienced.
We can talk about it because we was all there,
and I think it isn't just a story that Lewis
and stuff can talk to me about. It's a shared
experience and I'll find some comfort in that.

Speaker 4 (30:10):
Oh yeah, I'm much happier that we talk about it
than it being buried. Burying it is what meant that
I ended up needing mental health support, so it's much
better to talk about. But it doesn't mean it's easy.

Speaker 1 (30:23):
No, and I'm very grateful to you for this conversation.
I think there's a lot of people listening who are
in this dynamic in one way or another with their
own experience, wondering how to step forward and when to
step back and where to articulate their feelings about this
when there's you know, other people sort of at the
nucleus of it. If you like you've mentioned it a

(30:46):
couple of times, Lewis, I wonder if you would mind
touching a little bit on your mental health experience and
the point at which you realize that maybe you yourself
needed some support to process what happened.

Speaker 4 (31:01):
Yeah, it was. It was tough. So I specifically remember
being at work at the time. I wasn't working at
the university where we both worked now, I was teaching
at a college, and I remember my mum calling me.
I was just about to walk into a classroom to teach.

(31:22):
My mum called me, and the way that she said, Lewis,
as I answered the phone, I knew something was wrong,
and I was already running out the door before she
said anything else. I was already running, and I think
from that second I shut down I was just in
self preservation, not thinking about anything, and complete denial. You know.

(31:43):
We were in resuss with Marty for eighteen hours something
like that, and I remember being sat on the bed
with him in my arms, all these people rushing around
doing all sorts of things, and in my head, I
was going, well, we're fine. We know it's type one diabetes.
Thousands millions of people have type one diabetes. We know

(32:06):
what the problem is. We're in a hospital. It's fine.
It wasn't until later that I allowed myself to even
think about actually what was going on and how serious
it was and how close we were to losing. And
so I ended up being shut down for quite a

(32:27):
while because anytime I did allow myself to think about
it a bit, it just got too much. The first
night that we were on the ward, so we'd spent
the first night over night and resubs and then we're
admitted onto the children's ward the next day, and very kindly,
my mum paid for a room in the Premiere in

(32:49):
next door to the hospital so we could try and
get some sleeping shifts. And so I told my wife
to go and you know, have the first shift, and
the nurses set out as zbed to me, and I
opened up their little book that the diabete specialist nurses
has given me about managing Type one diabetes for your child,

(33:12):
and I've got two sentences here, and I broke down,
did all of a sudden, all of these thoughts about
what this means and what this is and everything, and
so I just had to shut it down. I just
couldn't because at that time, I felt like people didn't
need me to be emotional, they needed me to be functional.
As I completely shut down. And I had a really

(33:34):
really tough couple of weeks where if I didn't need
to do anything, I was lying on the floor of
my flat just motionless. I just couldn't bear to move.
I had like an hour and a half commute to
work every day at that point because whereas living and
where I was working, and every junction on the twenty

(33:54):
five so I was indicated to come off to go
home because I just couldn't bear to be a work
in that state. But I'd go one more junction. I'd
go one more junction. And I remember finally getting into
work and I walked straight into my manager's office and
I sat there waiting for him to arrive. I must

(34:14):
have been there half an hour, just sat in the
dark in its office, and he woke it. He walked
in breakdown. So I just can't. And even then I
was still trying to justify what I need is time.
I need to just be able to sort out the
functioning parts of my life rather than sort myself out.

(34:36):
It's just because there's a lot going on. So I
got myself signed off with stress for two weeks to
give myself that time, but really that didn't help, and
it wasn't until we seek support again for like the
functional parts of our life from a charity called I
think called Sure Start, where a volunteer comes to your
house and just help you with chores basically in the

(34:59):
ho so that you can deal with whatever else you've
got going on. And the lady who came to talk
to us about it, she was sat in our flat
having a cup of tea for maybe twenty minutes, and
then she just turned to me and said, you really
need help. Yeah, you're not okay. And until someone else
had said that to me, I had absolutely no acceptance

(35:23):
of it. I'm really really grateful what she did, because
really it wasn't her place to tell me that this
is a stranger coming into a house to see if
maybe someone could come and help us with the ironing
once a week, or you know whatever. But if she
hadn't said that, I wouldn't have gone to my GP
to seek proper mental health support, and I wouldn't have

(35:45):
ultimately had the medication that I needed and the cognitive
pay with therapy that I needed to sort out. And yeah,
it was a couple of months, but fortunately only a
couple of months because I'd had that support. I've had
the support from my mum and dad to be able
to give themself space when I needed. I had the

(36:07):
support at work once I admitted that I needed help,
and the actual proper mental health support from NHS services
that I needed. If I hadn't had all of those
when I did, it would have been much longer or worse.
And you know, it's definitely one of those things that's
flipped a switch in my head. I'm a strong believer

(36:30):
that I'd never experienced depression before, I'd never experienced anxiety before,
and I'm a strong believer that once that happens, a
switch has flicked and you have it forever. It's just
about how you self manage from them not And I'm
very fortunate that I was given the right technique cause
I was given the right support that I'm in a
space where after six months to a year, I've been

(36:54):
able to completely self manage and notice my own triggers
and notice when I'm having a bad day and what
I need to do to deal with it. Because if
I hadn't allowed myself to get that support, or allowed
myself to listen to people that said I needed that support,
you who knows what could have happened. I was really
not in a good place.

Speaker 1 (37:14):
Thank you for sharing that. Sharon, what was your experience
of that time?

Speaker 3 (37:24):
I think we feel things quite differently. I mean, Louis,
I was emotional immediately, so not necessarily in front of
Lewis and Steph, but certainly at home. And I'm a
talker of problems in that way, so I'm very close
to my sisters, and probably one of the main points

(37:45):
that I remember kind of breaking down just by chance
that weekend, So I think, Louis, I think I'm not
saying it was Tuesday. It was Maan Holidays to Monday,
and this happened on Tuesday. The diagnosis happened on the Tuesday.
On the Saturday, we happen to be having a memorial
service for one of my in laws that just had
to go to and I saw my sisters then for

(38:06):
the first time, and I broke down. I broke down there,
so I was I was able to let it out.
What was obvious from us watching Lewis for me, I
shouldn't says. For me watching Lewis was that it became
like a job. It wasn't like a dad. It became
very functional. So in all of the issues that Lewis

(38:27):
is describing, it wasn't presenting as somebody that wasn't coping
because it could not fault the care and the understanding
of type one diabetes that had just happened, and the
understanding of what we needed to do it at that
point we were injecting. The technology came a little bit later,
so and being able to show me that stuff and

(38:49):
for us to be able to do it, and it
kind of became a focus of a job. But watching it,
Mary could have been anybody. It was kind of just
doing the things that you do to keep someone alive
and that and actually it was it was my niece
who who's got type one diabetes. And she said to
me once, I don't have said this to you. She

(39:09):
said to me, I'm a bit wide about Lucy is. Yeah,
it's functioning. It's functioning as a dad of a child
with type one diabetes. But Marty Easy's son and this
and that that, that kind of connection was challenging for
a bit because I think he just couldn't do it
at that point. So I think we our experience after
that first day was very different because we're very different

(39:33):
human beings. So I'm an I'm an organizer, so I
wanted to wrap my arms around and solve it. And
so as I say, I went into looking for houses
and you know, keeping myself busy reading, you know, dating
with that, and probably didn't concentrate on the emotional side
of Lucy's pain because in some ways I was like,

(39:54):
you know, maybe maybe it's slightly generational. I probably and
this is not a thing would describe myself as a
bit more kind of stuff and answer, we've got.

Speaker 4 (40:03):
To do this.

Speaker 3 (40:04):
What's the option? And this isn't going to go away,
So we just got to get ourselves together and we've
all got to find our own way of doing that
I think that Lewis and Steff are more emotionally available
to each other and can support each other much better
than I was probably able to support Lewis at that
point with those emotions, because I would go into an

(40:26):
organization mode like what can I do? What can I do?
What can I do? Rather than just talk to me,
you know, it would have been what can I do?
But I think there was also that thing about pain
of sharing. As Lewis described earlier, it's kind of everyone's
trying to cope with their own part of this, and
you're not trying to layer your bit onto them.

Speaker 1 (40:44):
Yeah, Lewis, what would be your takeaway for someone who
is recognizing some of the things that you're saying, whether
they're dealing with a new diagnosis or not, in terms
of being able to seek support or put your hand.

Speaker 4 (41:00):
Up, Yeah, I mean, I think you've just got to
try and be honest with yourself, just allow yourself to
accept that you're not okay. And you know, as we
all know that, the saying goes, it's okay to not
be okay, but it's not okay to let yourself not
be okay. You know, we all have those days, those moments,

(41:24):
things that happened to us that could be short term
or long term, but ultimately it's our responsibility to make
sure that we're doing something about it. I was very
very lucky that my GP in particular was on it.
They Marty at the time and maybe still now, I

(41:46):
don't know, was the youngest diagnosis of type one diabetes
that they'd ever had in Eastern North art Hostital Trust.
So his GP was immediately aware of it. The morning
after his diagnosis, they'd had a briefing with all gps
in that surgery about Marty, so because everyone was so

(42:10):
concerned that, you know, this is such a special case.
So as soon as I called up and I said
I'm struggling, they're like, yeah, of course you are. We've
kind of been waiting for your call to be honest,
come in and we'll help you deal with it. And
so I didn't even have to like explain what was
going on. They were like, yeah, your Marty's dad, you

(42:31):
know all about it. And so I was very very fortunate.
And unfortunately not everyone is going to be that fortunate.
We know that it can be a bit hit and
mis with who your GP is and how busy your
practice is and all of that sort of stuff. So
unfortunately it does mean that for a lot of people
they do. You do really have to advocate for yourself.

(42:55):
But that's part of that it's okay to not be
okay is make sure you shout about it if you
have to, and get that support because ultimately is there,
you just might have to fight a little bit for it.
That as with anyone who gets support from the NHS.
The first thing that they tried that they did with
they gave me antidepressants, which I'm very grateful for because

(43:18):
it allowed me to start fixing the functional parts of
my life and allowed me to but it didn't fix me,
but it allowed me to get to a point where
I could. Then I could then put time and energy
into fixing myself. The second thing they tried to do
is give me online cognitive therapy, which for me just

(43:39):
did not work. But at least by going through that,
I knew it didn't work and I could go back
and advocate for myself like, no, I need to speak
to a person. Speaking to a computer is not helpful
for who I am and how this is going to
work for me, and being able to advocate for myself
I think is what meant that I had a relatively

(44:00):
quick recovery in terms of my mental health. That the
space that I was in, It's just unfortunate that the
time that you're least likely to advocate for yourself when
you're going through mental health distress. So yeah, if anyone
does recognize that within themselves, as much as you can,
or as much as the people who love you can,
you do need to advocate yourself to get there. Because

(44:22):
it can get better. The support is there, but sometimes
you have to fight for it.

Speaker 3 (44:26):
I think from also kind of going beyond that period,
because we knew that Lewis had gone through that kind
of crisis and we're seeking help. You only had to
do it a couple of times, but I was much
more understanding and understood it better when a couple of
times he said, I really need half an hour. I'm
not in a compact, I just need to go. So
we might be out with a family or something like

(44:47):
that and you just need to go take himself away
for And sometimes it was a very short period, you know,
half an hour, an hour or we was all in
the house and he need to go out for a walk.
But because you had shared that that this had happened
and that he was healing himself to some degree. We
were able to absolutely understand why we do that, and
that has become from what I see, less and less

(45:11):
and less and just needing, needing to do that. But
as you say, you never know when you don't know
what the trigger is going to be, because we've you know,
we've had some interesting times with march Side school and
things like that where where we've had to go into
the fight again really to to advocate for him and
be in a good place essales to be able.

Speaker 4 (45:32):
To do that.

Speaker 1 (45:36):
This episode of Type one on one is sponsored by
dex Com. As many of you know, I've been using
the Dexcom Continuous Glucose Monitor for years and it's hard
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Speaker 5 (45:47):
Made to my life. Their CGM sensors give me the
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with just a quick glance, I know where my glucose
levels are at, where they're heading, and where they've been.
So please take a look at Dexcom dot com. They
have a choice of systems so you can find the

(46:07):
right one for your lifestyle.

Speaker 1 (46:12):
I'm wondering from a practical point of view. Obviously all
of this is going on, You've also got a baby
who has a lot of needs, and as you yourself
are getting to grips with it and understanding what his
doses are.

Speaker 2 (46:26):
As you mentioned, he was on fingerpricking and things for
a while. What did that look like.

Speaker 1 (46:32):
After you'd come out of that acute phase and you'd
come home and you were in the day to day
of managing some a baby with Type one diabetes.

Speaker 4 (46:46):
It's kind of hard to remember, to be honest, because
that was the period that I was in full brain fog.
It's you know, that was the time when I'd get
home from work and I would be sat in my
car for fifteen minutes before I went in the house
because I was scared about what was going to greet
me on the other side of my front door. It

(47:08):
was a lot, I mean, you know, just thinking about
things like we're very fortunate in that because Marty was
so young, the technology that was available at the time
was guaranteed to him immediately. It was just a case
of waiting for it. So I think we had a
pump within two weeks. I think we had a CGM
within four to six weeks. And you know, we're very

(47:33):
fortunate for that that we know that there's people all
around the country that have to really fight for those things,
and the availability of them is definitely getting better, and
the pumps and the cgms are getting better as well.
But you know, the thing that I do really really
remember was the difficulties in card counting and that when
you get it wrong, the guilt that came with that,

(47:55):
that was a real struggle. I mean, again, he's ten
months old, so at that time, my wife's a midwife
and she's an infant feeding specialist. She wasn't at the
time she is now. And the phrase that I hear
a lot is under one food is for fun. So
at that point he's eating food, but how much of
it is going in him? You know, if you give
a ten month older eleven month old a bowl of

(48:17):
spagheti bolonnaise, some of it is going to end up
in them, but some of it's on the carpet, in
their hair, down the back of the high chair, all
that sort of stuff. So how in a dog yet? Yeah,
so how much of that can you actually carb count for.
And then on top of that, where he's actually getting

(48:37):
his nutrition is from breastfeeding, which is literally impossible to
carb count for because not only do you not know
the quantity that he's feeding at any time, but the
consistency of breast milk changes with every feed. It's a
dynamic thing. So I just remember that being an absolute nightmare,
and then when you end up over or under car

(49:00):
being significantly the guilt that went along with that because
it's your job, it's your responsibility to make sure that
he's getting the right amount of insulin, and that hypo
or those key tones are your faults because you got
it wrong. So yeah, I don't really specifically remember too
much the things like the finger pricks and stuff. And

(49:21):
actually he was very tolerant. We were very lucky. Again,
because the times that I do remember is I remember wincing, thinking,
oh God, Actually there's one specific moment that I really remember,
which must have been a week or two in and
I was having to give him a finger prick test
before he had some food. So he was in his
high chair and I was wincing, like he's going to

(49:43):
scream when I do this. This isn't going to go well,
and I pricked his finger and he looked at me
and pushed me out of the way of the telly
like he didn't care at all about this finger prick test.
The problem was, is that are blocking his view of
the tellytubbies. So we have been really fortunate that he's
always been very tolerant of things like canuls and finger

(50:05):
prick tests, and we haven't had to do that many
finger prick tests because we've had the technology. But yeah,
the carb counting, I really remember being a struggle in
those early days.

Speaker 3 (50:15):
Yeah, I think I'd already moved into kind of optimism
mode at the point, kind of in the first in
the first week, and was kind of thankful for stuff.
So I really remember clearly on the children's ward there
was a young girl that had just been diagnosed. She
was only maybe eight or nine, and they were having
to pin her down for every finger prick and every injection.

(50:37):
At that point, well, clearly that was going to happen
with Martie because he was so young. But he never
used to even WinCE like Lewis said, you didn't, you know,
you kind of say I'm really sorry to start off
by that. Really, And in the end, He's like, what
finger you know, you know where it just has never
really reacted to that stuff, even now with the with
the can, you know, and with the CGM, you'll kind
of go on and you'll pull it off himself and

(50:58):
you do it, but it's never something that's caused HI
much distress. So I was I was kind of already
very thankful for that side, because everyone was said, it
must be awful to be doing that to a ten
month old, and we're like, well, not really, He's kind
of been okay with it. I think the bit after
that that was most challenging was just general baby child
of illnesses were much more as ascibated. So a couple

(51:19):
of times I've done some respite looking after for this
and stuff, and twice ended up at hospitals with him,
just because he was a baby and his body reacted
quickly to being under the weather.

Speaker 4 (51:32):
And you just nora virus was fine, wasn't that had
noura virus?

Speaker 3 (51:36):
And you know, we've got stories about running one tax
of running to the back of a restaurant and say
just give me, and they gave me some golden syrup.
I just needed something at that point. Nothing else was working,
So there's a couple of those things, but in general
I have to say I can remember those things clearly.
He's eight as two memories in eight years, so I
don't want to again, don't want to kind of catastrophize it.
I think we've been incredibly lucky with his personality. She's

(52:00):
not something that's generally come from us, but also is
tolerance to just health care in general. I think he
doesn't mind guing to hospital, he doesn't mind all of
that stuff doesn't cause him any distress.

Speaker 4 (52:09):
I think it helps that you and me as well
have got a sort of healthy detachment from some things.
In a bit of gallows humor, like, I think me
and my mum both do share an ability to look
at things quite objectively sometimes. And I remember a few
times both of us being together and talking about it
to somebody and they, oh, I just don't know how
you do it, and I was both going, well, the

(52:30):
alternative is he dies. You know, let's not beat around
the bush about it. If you were in this situation,
you'd do it too. I think being able to have
that sort of healthy objective detachment does does help us
as well, and.

Speaker 3 (52:45):
He's got that as well. We did that to a friend,
remember one of his friends. He went out to play
football and he's pumped, fell out, I think, and he said, oh,
I need to go in. I need to go in
just sort this out. And they said, come on, multi
couver play and he said, what do you want me
to do? Die? And then he came in and got
it sorted out and went out again. So it's it's
kind of hed. He understands that he's just going to
have to deal with this, and if I not surround

(53:06):
him to deal with it.

Speaker 2 (53:07):
That's it. I think it really takes people back, doesn't it.

Speaker 1 (53:09):
And you're like, well, here we are.

Speaker 3 (53:13):
Like getting old, isn't it's the alternative.

Speaker 1 (53:15):
Yeah, it's really heartwarming to hear you speak as a
family and you know, these challenges are horrific, but the
bond that you guys have and the way that you
communicate with each other's it's wonderful to hear.

Speaker 2 (53:29):
So thank you so much.

Speaker 1 (53:30):
Do you remember the first time Marty sort of articulated
something language around diabetes or you got the impression and
understood that he knew what those buttons were for or
something like that.

Speaker 3 (53:43):
I remember an action more than words. Lewis might remember
the words, but I remember him, you know, And I've
seen other children doing it now, and I've seen people
post it on social media where they start to play
with the with the pen for the for the for
the prick, and trying to put the tab into the
into the machine. So more of a kind of customization
with the equipment more than more than words. I suppose

(54:06):
from very young he would say. He'd be saying, what's
the carbs in that? So we've always said you can
eat whatever he likes, but just tell us, you know,
because if you go to a party, he's along the
buffet table when people are given him the cakes, no problem,
just come and tell us. And so he would say
what's the carbs in that? For quite a young a
have you carved me? Or something like that? He would say,
what you need? But have you got earlier memories than that?

Speaker 4 (54:28):
I mean not really, because again because he's ten months
like he at that point, he wasn't walking, he wasn't talking,
So it's always been part of his reality. So I
don't really have those moments because we've always made sure,
like we said earlier, that it's not hidden, that it's
part of him it's not going away. So it's always

(54:51):
just been part of his reality, and so it's just
been part of his development. What instead, I've got memories
and the things that we've noticed. We've now got a daughter.
She's three years old and she is not Type one diabetic,
and seeing us or her do things has been interesting.

(55:12):
So when she was a baby and we were putting
her in the car seat, my wife kept noticing that
she was checking behind my daughter to make sure that
as she went in the car seat, she's not being
squished against her insulin pump. So my daughter doesn't wear
an insulin pump, but she's still checking to make sure
because the last time we had a baby, the baby
had an insulin pump. Or we tell Martin in the mornings,

(55:38):
you know when it's time for cereal, Okay, can you
put into your forty grands of carbohydrates please, And my
daughter goes, I'll carve myself too, and boo boo boo
boop presses her belly and said I've done it. And
so it's more seeing those things because to us, again
it was like someone said, oh, it must be so

(55:59):
hardh having a three year old and his Type one diabetes. Well,
I've never had a three year old who doesn't have
type one diabetes. So now that we're having those stages,
noticing where things are different for the other reason has
been interesting. Yeah, we're expecting these challenges that kind of
aren't coming yet with our daughter because we're used to
the more difficult.

Speaker 3 (56:21):
It might also not you know, we try to the
positive and positives that he loves to quote is he
gets to jump past at the theme parks when we
took him to Disney, and you know, he doesn't understand
now why people q. You know, he just he says, oh,
just your hand and I go. So he's got that.
And he's also had no shortage of girlfriends at school
because a kid with jelly babies in their pocket is

(56:41):
you know, it's high. That's a higher currency in the
school playground in primary school. So those sorts of things
have meant that he does see the positives in try
to see the kind of lights.

Speaker 1 (56:52):
Of the I you've three able to skip the dinner
here when I was in primary school, and I've never
had more friends in my life, to be honest, because
I was allowed to take a friend with me to
skip the gender.

Speaker 3 (57:02):
Queue with me.

Speaker 4 (57:04):
We had exactly the same thing, to the point where
we went to the school and said, just stop doing
that because it's you know, he's getting a bit too
big for his boots. Yeah. Yeah, he always had a
thing because at nursery was a bit he was their
golden child, a bit because they jumped through the hoop
straight away. Obviously they saved his life that there's no

(57:26):
two ways about it. They're the reason that Marty's still alive.
And immediately they said what can we do to make
sure he comes back? What training do we need, what
can we do? They were incredible, but it also meant
that quite a few of them had a big soft
spot for him, and he got away with murder. And
so I remember when we went to meet his reception
teacher before he started school, having to say to her, look,

(57:48):
just you know, he thinks he's special and we all
need to teach him that he's no more special than
any other kid. So as much as possible, please, I
know you think it's nice to be giving him the
special treatment to make up for the things that are negative.
Let's not do that. You're getting a bit big for

(58:09):
his boots. Now we need to take him down at.

Speaker 2 (58:12):
Interesting.

Speaker 1 (58:13):
This is fascinating because I think my mom was that person.
She was like, you're no different from your brothers, so
don't you be getting any ideas.

Speaker 2 (58:21):
And it was at school where they were like, you know,
I think this.

Speaker 1 (58:24):
Isn't a good example because I think everyone else got
sweets in the class and I wasn't given the sweets,
which actually I could have had, but you know, different times,
and I got this pack of glitter instead and it
was the best thing that ever happened to me, honestly.

Speaker 2 (58:40):
And then I've come home my mom be like what.
So it's an interesting balance.

Speaker 1 (58:45):
But it's just so funny these things you have to
deal with, isn't it. It's bizarre. But as you say,
it's your reality. You don't know any other way. Can
you speak to me a little bit, as you've alluded
to the transitions from nursery where they were so on
it and so amazing, say at school was maybe a
bit more complicated. Are there sort of insights that you

(59:05):
can share from that time that might help others or
just your own experience?

Speaker 4 (59:11):
Yeah? Absolutely. I mean when Marty went from nursery to school,
it was a challenge and I don't I don't want
to say that is that the negative sides are the
fault of any specific membor of staff or anything, because ultimately,
when you train to be a teacher, you're not training
to be a nurse, you know, So this is not

(59:32):
the part of the job that you expected or signed
up for or anything. It's been forced on you. And
Marty's reception teacher was amazing. She was really really she
really wanted to make sure she was doing everything right.
She tried really hard, and we've actually become friends since

(59:53):
you know now that he's she's not his teacher anymore.
But trying to get at the school as an entity
to understand that this is something that needs planning and
needs to be taken seriously sometimes is a battle. So
the day that Marty was allocated his school place, I

(01:00:16):
emailed the school same day and said, just to let
you know, we found out today that you've got Marty's
This is April. You've got Marty coming in September. He
has type one diabetes. Now at the time to start
thinking about it. Any support we can give you great
Our nursery have said that they'll come and give you,
have a meeting, give you training insight, show you the

(01:00:36):
log book that they have all of that sort of stuff,
and ultimately the schools didn't engage with it. From their perspective,
they'd had a kid with type one diabetes before, but
that kid without type one diabetes were diagnosed age eight
or nine, so he was pretty much self managing from
the start and self injecting. They didn't realize that the

(01:00:58):
difference between a four year old good type one diabetes
and a nine year old with type one diabetes is massive,
so they didn't engage with that level of support that
we had offered them, and it wasn't really until September
that they did, and that meant that, you know, we
had to spend eight weeks in the school supervising them

(01:01:18):
while they got fully trained and used to it and
signed off. So that's difficult in itself because I have
a full time job, my wife has a full time
job for the NHS. Balancing all of those things whilst
trying to be in a primary school full time is
really difficult. We had issues getting him and I don't
want to talk about it too much because it gets contentious.

(01:01:39):
We had issues getting him into after school club that
took years to resolve, so that was difficult, and then
every year you have an element of it again because
he moves up a class and has a new teacher,
and that teacher has never dealt with type one diabetes
before this year he moved up. Not only did he
have a new teacher, but he was also starting swimming
black Compulse with swimming lessons in school and had a

(01:02:02):
new TA, so none of his support system were there.
And again, you know, we've had a letter from the
school saying they're starting swimming lessons in September. Just so
you know, this is happening to pupulsory. It's part of
the national curriculum. And so I emailed back and said, okay, great,
what changes are you making to the care plan that

(01:02:23):
you've discussed with our healthcare team and we're talking about
so well, his care plan at the minute specifically says
you can't turn his pump off, you can't move his pump,
what's with Canyela? None of these things? So what's your plan? Oh,
we haven't thought about this. Maybe let's have a chat
about in September. No, no, by September, it's too late.
Let's meet and have a chat with it now. Is

(01:02:44):
these like constant hurdles, which I don't specifically blame anyone
for because it's not their life, it's not their reality.
But trying to it gets tiring, having to continually advocate
and make people SELLO, no, this is important, you know, Oldultimately,
if you do the wrong thing at swimming lesson, it
can cause infection in a canular site, It can cause

(01:03:06):
hyper it can cause hyper it can cause any of
these things that you don't want to happen to an
eight year old. So let's all work together to make
sure that you don't. You aren't the reason that that happens.
To make your old please, you know, it's those sorts
of things. Everyone's trying their best, but they don't understand
necessarily what they need to be doing, and you need

(01:03:28):
to give people a bit of a reality check sometimes
and it feels harsh, but ultimately, these people are working
the school because they want to support kids, and they
need to understand that that involved putting this work in.

Speaker 3 (01:03:42):
I mean, I remember the start really clearly. One Obviously
we were quite anxious about the start, there's no doubt,
and I tried to support them. So I spent a
couple of days working from the car park. So I
was sitting in the car well because they the heck
training hadn't been completed, so they were confident in that
point signed off. So we wanted to just make sure,

(01:04:03):
so we kind of did shifts. So I did a
couple of days working in a car park and I
know one of the days that Lewis was doing that.
And again this there's honestly no blame. She's just life
with up one diabetes and a child. It was given
a banana and given the incident for the weight of
the banana, not the calves of the banana, and they
realized immediately they did it, didn't they do? And then

(01:04:24):
like rang Lewis was in the car park. I think
at that point rang I said, oh my god, what
do we do? And so you know you've given lots
of stuff, do you want to just love a bit
more to that though it.

Speaker 4 (01:04:32):
Was probably yeah, yeah. So I was sat in my
car and that his teacher came running out bank you
on my window saying I've just done this. I don't
know what to do and she was like massively distressed.
And again it was a breakdown communication the ta and
weight banana had given it had told the information to
the teacher, and they just hadn't purtued too together until

(01:04:53):
the incident had gone in. And so you know, Marty
was fine. Ultimately, he had the time of his life
because he was in a packet of jelly babies. The
kitchen were bringing every cookie they can find in the
cupboard and apple juice, and you know, he had a
grand old time munching away in the corner and ultimately
never had a hyph So he was fine. But obviously

(01:05:13):
it was a near miss, and it was really distressing.
For I was kind of okay with it once I
knew he'd eaten enough cubs, I was fine. But for
his teacher, she thought that she'd killed an eight year
old child, and so I remember saying to her like, no,
are you okay, Like he's fine, I need to deal

(01:05:34):
with you now, are you all right? And we had
to have a meeting with the head teacher because it
was a near miss, and they came in with these
big folders like ready for they were ready for me
to sue. So they came these like big folders ready
to be on the defensive, and started immediately before I
said a word on the defense of everything, like no, no, no, no, no, stop,
let's stop. Let's stop us here. No, I'm concerned, missus,

(01:05:58):
head teacher, that you are not providing adequate support for
your staff, because ultimately she's been expected to do this
new medical thing whilst being harassed by twenty nine other
four year olds. So I'm not interested in any of
this stuff. Well, I want to know is how are
you supporting your staff from now on? And I think

(01:06:18):
it really shifted the dynamic and the conversation at that point.
But yeah, making sure that the schools aren't just supporting
your kids, but supporting their staff in order to support
your kids, it's really important.

Speaker 3 (01:06:31):
And that's a real memory going into the class and
seeing the teacher absolutely doing her best with thirty kids
and Marty's phone around her neck, you know, trying to
like check that and listening for the butt, you know.
And it got better. He's got some support, he's got
a TA that's been following through his older He can

(01:06:51):
do a lot of it himself now. But those first
that transition from nursery to primary is definitely a point
of challenge, I think for anybody who's got of age.

Speaker 1 (01:07:01):
Yeah, and you speak to kind of the fact that
these things are going to happen, Like I don't have
thirty children to manage, and I've injected my long acting
when I meant to inject my fast acting, or.

Speaker 2 (01:07:11):
I've dosed for one and I was taking the other.

Speaker 1 (01:07:14):
You know, every day, I could probably tell you something
where I think, well, Jen, that was silly, and I'm
the one that lives with it, and I have lived
with it for decades.

Speaker 2 (01:07:22):
So that teacher, you know, and you're so right, like
to change.

Speaker 1 (01:07:26):
That language and that perspective, to take that off her
shoulders as well. I think it's just about being aware
that we're humans and trying to navigate through this.

Speaker 2 (01:07:36):
And I think that's that's.

Speaker 1 (01:07:38):
Really valuable for people to hear as well, that it's
this collaboration and everyone's in it trying to find their way.
But as you say, to continually be advocating not only
for Marty, but for yourselves, for teachers. You know, this
is a lot Lewis, how do you and stepf find
time or how do you make room for yourselves as

(01:07:59):
ada and to kind of light and the load for
yourselves as an adult couple, Like where have you found
spaces to.

Speaker 2 (01:08:08):
Be able to do that or how have you been
able to if at all.

Speaker 4 (01:08:14):
In a large part, it's my mum and dad. As
my mum said earlier, from a very young age, they
would have Marty for sleepover every Friday, and they still
do have at least one of my kids for a
sleepover every Friday that they are home. And you know
that has allowed us to either just have Oh and
even better than that, my mum would pick Marty up

(01:08:36):
from nursery on a Thursday to then have him for
him to be at home and to be there on
the Friday that it used to be thirty steps were
getting confused in the timeline of things. Either way, they
had him a night a week, and that allowed us
the ability to either stop and slow down and be
able to check in with each other as a couple,

(01:08:57):
as a husband and wife rather than as mum and dad,
or just to sleep. It is quite nice, yeah, turn
the alarms off, be able to have an unbroken night's sleep,
and it's fighting. I mean, we're at the point now
where everything is a lot easier to manage with Marty
because he's bigger, so he's less sensitive to everything. The
technology has improved massively in the last seven and a

(01:09:19):
half years that actually the issue quote unquote issue isn't
having a kid with type one diabetes anymore. It's the
fact that I've got three year old who doesn't sleep.
So I'm still not sleeping through the night. But it's
usually not because of Marty, because I'm being kicked in
the face by a toddler. But absolutely Mum and Dad
have been invaluable to being able to do that. We're

(01:09:43):
going away for two nights this coming week to be
able to have that moment to stop and reconnect. And yeah,
as mum's pulling her hair out there, that's because they're
going to be at nanny and Granddad's. And if we
didn't have that support network behind us, I was so
so fortunate because if we lived away somewhere or we
just unfortunately didn't have that type of family support network,

(01:10:07):
I don't know what we would do or how we
would be able to survive as a couple. That time
has been so valuable to us.

Speaker 3 (01:10:14):
Yeah, I mean some of that, and genuinely, as a grandparent,
it's not a burden. So we've got a very open relationship.
So if we can't do it, we say no, right,
So there's no there's no guilt here. We do it
at the point where we want to and we can.
And for both of those things, there's been a couple
of things that have really helped. One is Lewis's dad, husband, Jill.

(01:10:36):
He finished work nine years ago, so if we just
work up fifty one, so he's been available when needed
for daytime care. So we were I'm a strong believer
in having these conversations when you don't have to have them,
So right from before there was even children around, we said,
if we can, we'd be prepared to look after the
kids for one day week, but no more because we've

(01:10:56):
got we've got a life as well, So those conversations
weren't difficult at the point where the children have come
along and we've been able to make that work for us.
And then also because we're working at the same place
Eve now, for example, he's at the university nursery, so
to pick her up and drop her off, all of
that works very very easily. So and there's half an

(01:11:18):
hour journey between where we live, so those things have worked.
There might have been instances and I was very aware
of that diagnosis and ongoing that. As Lewis said, he's
in North Wales at the moment. Steph's family are from
North Wales and so she hasn't got that support network
around her in half Genetics. So absolutely understood that we

(01:11:38):
needed to step forward to provide that.

Speaker 1 (01:11:41):
And do you think having that kind of open communication
has helped you, Lewis, to articulate Marty's needs to people
outside of this nucleus and kind of hand over some
of that control as he's got older and more independent.
How has that dynamic within your family that's always been
there since his diagnosis helped or affected these milestones as

(01:12:03):
you're moving through Marty's life.

Speaker 4 (01:12:06):
Yeah, it's hard to say, really because I think personally,
I still think of diabetes very functionally. It's again as
a data nerd. It's this and this and this, and
it's not I don't think of it like holistically, Like
I think of Marty as a human and I think

(01:12:27):
of his diabetes as a separate thing. And so I
don't know whether it's the way that we have always
been able to discuss his diabetes and how to manage
it that has meant that I take that through tell
us to speak to other people about it, or whether
it's just because the way that I deal with this
sort of thing is by dealing with it as its
own sort of separate sort of entity. What has been

(01:12:51):
very useful is having that ability to talk about my
mental health in that way, because I I think my
mum would admit that. Prior to Marty, I think diabetes,
things like mental health was not something we spoke about.
We're not We're not by trade a emotional family, or

(01:13:12):
speak about our feelings or stuff like that, and so
having that need changed within all of us and made
it a lot easier to And so in my day
to day job, a lot of it is supporting students
with their mental health needs. You know, I'm not a
mental health advisor. I'm very clear to them about that.
But being able to speak to them about my own

(01:13:33):
experiences and listen to them is not something that I'd
be able to do if it wasn't for that open
communication that we had would developed and it was definitely
a big part of my being able to manage my
own mental health. So I don't think actually it's the
diabetes thing is part of that. I think I always
would have been able to talk quite factually and functionally

(01:13:55):
about it, just because of the way that I the
way that I function as a human. But the mental
health side, the open communication has been massive.

Speaker 1 (01:14:04):
Yeah, I think that data side of things really makes sense.
It's like, this is what you need to do. You know.
There are times when you know, I guess I'm a
bit more emotional. I can be about about all aspects
of life and deep thinking and feeling. And sometimes that's
helped and sometimes that's hindered because diabetes is so huge

(01:14:24):
in itself.

Speaker 2 (01:14:25):
From a practical point of view, every.

Speaker 1 (01:14:27):
Day I have to carry all these things and remember
these things and pick up my prescription and refiel these
pods and whatever it is. You know, So I think
sometimes keep that separate and be like, Okay, this is
my tick list, this is what needs to happen for
these things. That actually sometimes that separation I find I
personally mind is someone living with.

Speaker 2 (01:14:44):
It quite helpful? With that in mind.

Speaker 1 (01:14:46):
As data lovers, as self professed data lovers, what do
you do and how do you react when the data
defies you?

Speaker 2 (01:14:52):
As it does?

Speaker 3 (01:14:54):
It just set it's a new mathematical problem, doesn't it.
I just see it as a set of something mathematical
problem to be solved. But I don't I mean I'm
talking personally now, I don't I don't particularly break myself
when when my numbers are high or low, because because now,
of course, we've got him for a limited period, so
I kind of say, when he's got seven days in

(01:15:15):
the week and if he ends up a bit higher
with us. I think my husband struggled more with the
thought that he might go low because he's a bit
of a feeder, so he would I think he would
honestly say that he would run him a little bit high,
almost deliberately for his own for his oone mental health.
I think he found that bit quite challenging once I knew,
because Mike is an incredible eater, Like he really loves

(01:15:37):
his food and loves different types of food. So because
I know he's going to eat, I don't really worry
about the loaves anymore, and so I would try to
I try to bowl less hard, you know, to keep
the numbers, because I know that if I offer him
something else, he's going to eat it. That was different
when he was younger, So I think in terms of that,
I'd probably do give myself a bit of a break
on that now because I'm saying for the twenty four

(01:15:58):
hours is with me. That's not going to bring in
the health concerns that might come with poor management further
down or further down the road, I think for Lewis
and stuff is more relentless. And that's how I would
describe it when I'm talking to people about it. It's
just relentness, you know, the thought that you can't put
a single thing in your child's mouth without thinking about

(01:16:19):
the carbs around it. When people around you and they
start to see that, they start to understand that it
is absolutely relentless.

Speaker 4 (01:16:28):
Yeah. I find that the data defying you to be
quite frustrating. That I've accepted the fact that the data
is always going to be malleable and it's always going
to be adjusting. You know, he's still only eight years old.
He's going to keep growing, he's going to keep having
hormonal changes, and we're going to have to be constantly
adjusting his ratios all the time. That's fine that I

(01:16:50):
can deal with. That's you know, changing data. That's not
a problem. What bothers me is when or if he's sick.
Even I can in my head say, okay, well, this
is just something else that's been added into the equation.
It's just a new part of this algorithm going on
in the back of my head. What gets me is

(01:17:11):
when you just have those unexplained dates, those days when
there's nothing wrong with him. He's not doing you know,
it's not a heat wave or a cold snap outside.
He's slept well, he's eating the same, he's not running
a temperature. Nothing particularly exciting is happening. But for some
reason the insulin are turned to water and we can't

(01:17:33):
get him below fifteen all day, no matter how much
we give him. Those are the days that really frustrate
me because there's the impulsive part of me that's just like, right, fine,
I'm going to give you way too much insulin so
that you do crash down, and I'll deal with it
when you get close. But then I just have the
overriding thing in my head saying, no, I don't understand
this problem. Mathematically, everything is correct, and I really struggle

(01:17:58):
to pass to that bit. If there's anything that I
can justify it with, I'm okay. It's those really random,
unexplained data. You just don't know what's going on. That, yeah,
I find really frustrating.

Speaker 2 (01:18:11):
I'm just furiously nodding at you. I wouldn't even consider
myself a data nerd. But those days are I'm like,
what is this?

Speaker 4 (01:18:19):
So I hear you, I hear you, and the worst
thing is you'll never get the answer. You'll finally solve it.
It might be twenty four to forty eight hours. You'll
finally get everything back down to normal, but you won't
know why.

Speaker 2 (01:18:29):
Oh dear, it really keeps on giving, doesn't it.

Speaker 1 (01:18:33):
You've described yourself as optimists, so I'd just love to
hear from both of you something that Marty has taught
you as the human at the center of all this
who has had to deal with so much like what
he's shown you as you know, a young boy dealing
with a lot. You know that that that you've really
kind of step back and thought.

Speaker 2 (01:18:54):
Yeah, yeah, there he is.

Speaker 4 (01:18:57):
Yeah.

Speaker 3 (01:18:57):
I mean, I think from my side, he is kind
of fearless about it. You know, there's not been I
don't think we've constrained him, and he hasn't constrained himself,
so you know, I think, you know, I like to
be outdoors with him, so we do a lot of
activities with him, and there's not one that I think
we can't do that because of the diabetes and he's

(01:19:18):
kind of like that as well. I've never heard him
once say no, I can't do that because so the
fact that he is just a kind of normal, annoying
eight year old is what just fills me with the
most joy. And I think from my own responsibility, and
I say it's quite often to people, and Lewis's might
be different as a dad rather than as a grandparent,
is I just feel that I have to do a

(01:19:38):
fit i can to give him the best opportunity to
get to fifteen sixteen. Then I'm going to say over
to you, you know, if you now want to go
and drink and you know damage. But we've got responsibility
to get his body to a stage in teenagehood where
we can say and now this is your life, you know,
And there's that period where and I think we're going

(01:19:58):
to struggle a bit with that because we are so
into the numbers. The day he says, turn off your
tracking on me, it's going to be really interesting because
I you know, I've got it on my watch, I've
got it on my phone, I've got it on you know,
we've kind of got it everywhere. So yeah, I'm really
I'm really proud of the boy that he is and
that he's managing to is just living with it. It

(01:20:18):
isn't It isn't him. It just happens to be a
thing that he's got that's a bit unique and makes
him very special to me.

Speaker 4 (01:20:26):
Yeah, It's the thing that makes me so proud is
how unbothered he is. We speak about constant is he
goes to cubs, and again, we're very fortunate. We've been
so lucky with the people we've had around us. His
Cubs leader is a dietitian or Scout leader is a dietitian,
and one of the assistant leaders is a paramedic. So
I've never for a second not felt safe leaving him.

(01:20:50):
And they immediately engage with the trailing that they needed
and that it just when they're at camp, she'll shout him,
you know, the alarm with gold. She'll shout to him,
Marty Kamira second, and he won't even look at her.
He'll just walk up to her backwards and present his
backside where his pump is, just as a kind of

(01:21:11):
just deal with it and let me get on with
my life. You know. He's just so blase and not
bothered about any part of it. And if a kid
asks like what's going on, you know, as new kids
come up in the younger years or whatever, he tells
them very eloquently, this is what it is, this is
what my body can and can't do, and this is
why we need it. But other than that, he's just
completely like, whatever, just get up, get it done, get

(01:21:35):
out of my way, and let me get on with
what I'm doing. And yeah, I'm really proud that we've
managed to instill that within it, because it must be
so so hard living with diabetes. If you're uncomfortable with
the fact that you are diabetic, I can't imagine what
it must be like.

Speaker 1 (01:21:53):
Yeah, no, that's incredible, and I think a lot of
that is testament to you guys. That's kind of the
start I had and I was diagnosed, you know, it
was like, Okay, how do we carry on and do
everything that she's already doing? And I was doing every
club after school, club under the sun. Yeah, just interested
in far too many things, and it never stopped. And
I have carried that through in my life. So I

(01:22:15):
hope that's of some reassurance to you, But I don't
think you need it in the sense of it just
sounds like you know, I'm not pretending by any stretch
of the imagination that it's not easy for you guys,
but to hear how you're handling this and what you're
passing on to Marty and what he's showing you is wonderful.
So thank you so much for talking to me. This

(01:22:36):
has been such a valuable conversation for me, and I'm
sure for the listeners too, So yeah, I'm truly grateful
for you, Sharon for reaching out and offering your perspective
as well, and I hope it's been an interesting conversation
for you guys as well.

Speaker 3 (01:22:50):
And thanks Jen. And the reason that I did do
that was that it is very important to me that
Marty C's role models of adults are living well and
living alongside their diabetes, you know, and there's all the
kind of celebrity advocates and the sporting advocates and that
sort of stuff, but also this type of thing where
he's going to be able to join in a community,
because I think it is important that he has a

(01:23:11):
community outside of his family that he can really let
off steam to and he needs to find that community
in time, because there won't be enough people just naturally
in his own place, and I'm sure it's going to
be via social media other places. So that's why I
started listening to you and actually followed you from your
travel really because we're interested in travel, and your travel
stuff was where it started. So thank you for doing

(01:23:33):
this work because it's important for people in the community.

Speaker 2 (01:23:37):
Oh I received that. Thank you so much. That's really kind.

Speaker 1 (01:23:40):
Yeah, I do sort of want to show like it's scrappy,
it's methy. The data defies you. But we're out there anyway.
You know, we're doing it, So thank you. Do you
guys have anywhere where people can reach out to you
if they do want to stay hi or have any
questions about some of the stuff you've talked about.

Speaker 3 (01:23:56):
Yeah, I'm on social media generally as S Harrison b
and then whatever the handle is, sometimes posting about type one,
not often often it's just family photos and stuff. So
I'm not particularly interesting in now, more of a kind
of voyeur into TYPEE type one sites. But yeah, I'm
across social media under this Harrison.

Speaker 4 (01:24:15):
And I'm on social media at lew H. Barker but
also Lewis Harrison. Barker is a quite unique name. If
you take it into Google. You'll find me somewhere or another. Great.

Speaker 2 (01:24:24):
Thank you so much.

Speaker 1 (01:24:25):
Thank you for everything you're doing and the fact that
you're passing us on to others. I think the way
we go about our lives and kind of affect change
one conversation at a time is often more impactful than
we realize. So yeah, thank you so much for this conversation.

Speaker 3 (01:24:38):
Are you welcome? Thanks Ji, I hope you enjoyed.

Speaker 1 (01:24:40):
This episode of Type one on one. Please remember that
nothing you hear on this podcast should be taken as
medical advice.

Speaker 2 (01:24:48):
I'm definitely not a healthcare professional.

Speaker 1 (01:24:51):
If you like what you hear, hit subscribe and do
leave a little review on iTunes if.

Speaker 3 (01:24:56):
You have time.

Speaker 1 (01:24:57):
It really helps to spread the word about type one diabetes.

Speaker 2 (01:25:01):
And thank you so much for listening.

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}A father and grandmother share differing experiences of 10-month-old baby's type 1 diagnosis with Sharon and Lewis Harrison-Barker

Episode Transcript

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