May 6, 2025 • 48 mins
Episode Summary
In Episode 33 of Think Like a Pancreas-The Podcast, host Tavia Vital, along with guests Jessica and Jamie, share their personal experiences with parenting children diagnosed with type 1 diabetes.
They discuss the emotional turmoil surrounding the diagnosis, the overwhelming nature of managing diabetes, and the journey towards acceptance and finding a new normal.
Their conversation highlights the importance of community support, coping strategies, and the shared experiences of parents navigating the complexities of diabetes management.
Listen to their heartfelt stories, challenges, and triumphs as they share invaluable insights and tips for managing life with T1D.
Key Topics Discussed- Early Diagnosis Stories: Listen to how each mother discovered their child's condition and the immediate steps they took.
- Coping Mechanisms: Acceptance takes time and involves perspective shifts. Listen to the emotional journey and the coping mechanisms that helped these mothers stay strong for their children.
- Support Systems: The role of community and professional support in managing T1D effectively.
- Daily Life with T1D: Tips on integrating diabetes care into daily routines and ensuring a balanced life for their children.
- Managing diabetes is an ongoing learning process, requiring adjustments and proactive planning.
- Celebrating small wins helps manage expectations.
- Future Outlook: Insights into how these families are preparing for the future, including managing T1D in older children and young adults.
00:13 -- Welcome: Introduction to the episode and today's guests.
01:40 -- Early Diagnosis: Stories from Jess and Jamie about first discovering their child had diabetes
10:36 -- Life after diagnosis. Now what?
19:21 -- Advice for the newly diagnosed
30:37 -- Learning to let your child be a child
35:50 -- The Value of working with Integrated Diabetes Services
42:56 – Final Thoughts
Links:
Welcome to Holland by Emily Perl Kingsley
Featured Guests- Jessica from Colorado, mother of Grace, who was diagnosed with T1D at four and a half years old.
- Jamie from Canada, whose daughter Ellie was diagnosed at 21 months old.
The information contained in this program is based on the experience and opinions of the Integrated Diabetes Services clinical team. Please discuss any changes to your treatment plan with your personal healthcare provider before implementing.
If you enjoyed today's episode, don't forget to like, follow or subscribe on your favorite podcast app.
If you would like to book a consultation with an Integrated Diabetes Services Team member go to:
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Gary Scheiner (00:13):
Welcome to Think Like a Pancreas, the podcast where our goal is
to keep you informed, inspired, and alittle entertained on all things diabetes.
The information contained in thisprogram is based on the experience
and opinions of the IntegratedDiabetes Services clinical team.
Please discuss any changes to yourtreatment plan with your personal
(00:33):
healthcare provider before implementing.
Tavia Vital (00:35):
Good morning.
Thank you for joining our Think Likea Pancreas podcast this morning.
My name is Tavia Vita.
I'm a registered nurse, certifieddiabetes care and education specialist
with Integrated Diabetes Services,and today I get to host our podcast.
We are going to be discussing.
Uh, some of the details involved inwhat it's like when you have a child
(00:59):
with type one diabetes, thinkingabout the diagnosis, how things
start off, and then where you gofrom there and looking at things
from a now perspective looking back.
As many of you know, our team atthe Integrated Diabetes Services,
we all live with Type one diabetespersonally, so myself included.
I've lived with typeone for over 40 years.
I have two kids.
(01:19):
My oldest, who's now 17, was diagnosedwith type one diabetes at age 12.
In the times of Covid, so I know I'mnot alone with that diagnosis time.
With that said, I'd like to introduce mypartners today we have Jamie and Jessica.
So Jessica, will you tell us a little bitabout yourself and your daughter story?
Jessica (01:40):
Yeah.
Hey, Tavia, it's good to see you.
My name is Jessica and I, uh, we'rein Colorado here and my daughter
Grace, who's now almost eight wasdiagnosed at four and a half.
I do always love hearing otherpeople's diagnosis stories.
I, I'm not sure why that is.
I think it's kind of a community.
And you just, you're in the sameboat, but it's probably similar
(02:03):
to most other people's stories.
Two months after Covid, which waseven a mild case of Covid, she
started drinking a ton of water, andI remember those signs on the back of
the pediatrician's door, which I still,to this day, I have a note to email--
there's a lady who actually createdthose and just had them distributed.
So I, I, it's on my listto email her and thank her.
(02:23):
So I put the dots together.
But she started throwing up in themiddle of the night and she wasn't sick.
There was no fever, and that'swhen I realized-- there was
an intuition there for me.
I think I knew, but I didn't wannaknow, but I did rush to the er and
even I told the doctor when we gotthere, Hey, could this be type one?
I don't know how you test for that, but,and sure enough, we were transported to...
Tavia Vital (02:45):
That's amazing that they had flyers up that you saw at the
pediatrician office and that you thoughtabout it while your daughter was sick.
So that's pretty interesting.
Jessica (02:52):
Well, and you always think when you see those flyers, those people,
not us, you know, but you're reading itbecause you're, you're just waiting in the
pediatrician's office and you're absorbingall the stuff they have on the walls.
But I'm glad it wasthere 'cause it was us.
Tavia Vital (03:05):
Hey Jamie.
How about, tell us a bitabout you and your daughter.
Jamie (03:08):
Ellie was diagnosed at 21 months.
It was just after Christmas.
We thought for sure it wasjust a respiratory infection.
Her breathing was off.
She did vomit from time to time.
But at that age, you know, it justkind of gets chalked up to, oh,
she's got a virus from daycare or,so we didn't read too much into it.
And then her breathingcontinually was off.
(03:29):
So we thought, well, let's takeher to emerg to get checked out.
And so we took her, I think it waseight o'clock at night and it was
during Covid, so we didn't even havea doctor come in and visit us for the
first four hours that we were there.
Tavia Vital (03:41):
Wow.
Jamie (03:43):
So here she is, 21 months old, it's midnight.
So I said, we're going home.
Like I can't sit there all night with her.
So then the next morning I had to work atthe hospital, and so my husband brought
her in and of course he couldn't leaveher to go to the bathroom or anything.
So on my breaks, I would go down tothe emergency and sit with her so
he could at least go pee or stretchhis legs or whatever he had to do.
(04:06):
Well, near the end of my shift,she was diagnosed with respiratory
infection and severe constipation.
So we left the hospital,got home and-- he was home.
Separate vehicles 'cause I was at workand by the time I got home her lips were
white and we rushed right back and theydidn't even like make us triage again.
They just took us right back.
And um, the doctor that was on,he pulled down his mask, 'cause
(04:29):
everybody's wearing masks during covid,smelled her breath and said type one.
Jessica (04:33):
Wow.
Tavia Vital (04:33):
Gosh.
Jamie (04:34):
So we didn't even have blood work done until the very last visit.
So three trips to emerg in 36 hours.
She was in DKA.
Our family doctor said that if we waitedanother 24 hours, we would've lost her.
Yeah.
So here we are in Canada andthat was our fun experience.
Tavia Vital (04:50):
Your story.
Yeah.
Jamie (04:51):
So.
Yeah, same thing.
She was drinking lots,wetting through diapers.
I'd even change her once, twicethrough the middle of the night
thinking like, what is going on here?
You know, like, yeah, she's drinking more.
Does it make sense?
But I even have a cousin who's typeone, her other side of the family is,
they have some type ones in the family.
So I didn't even know really thesigns and symptoms to look for because
(05:13):
she was diagnosed at age seven andthat was like 30 plus years ago.
Tavia Vital (05:17):
Right.
Yeah.
Jamie (05:17):
So, you know, was it the same thing, wasn't it?
Tavia Vital (05:20):
Yeah.
But.
So, yeah, my son,
Jamie (05:22):
it was scary.
Tavia Vital (05:23):
My son's story's a little different because since I
have type one diabetes and I'm adiabetes educator, I know about
research studies that are looking forscreening risk for type one diabetes.
So my kids had already been enrolled in avariety of research studies since birth.
They actually took cord blood and testedand know that both of my sons have the
highest risk genes for type one diabetes.
(05:45):
So due to that, then we couldchoose to enroll in other studies.
So we were in a study called Teddy.
That monitor blood tests every threemonths and we brought in tons of
samples of other things that theycollected throughout the study.
And it's from birth until age14, um, or until someone converts
(06:06):
to having type one diabetes.
And so I already knewthat my oldest son, Isiah.
He already was making antibodies, sohe started making antibodies when he
was a toddler, and his A1C startedcreeping up when he was a young child.
And then we did whatever we thoughtwe could do to try to intervene.
Right?
Whether any of it worked or it just washow his body worked, who knows, right?
(06:28):
But we did the higher doses ofvitamin D and vitamins and Omega-3
and probiotics and, you know, we triedall the dietary things that at that
time, you know, not five years ago now,like 17 to 15 years ago, that we read
about may or may not help reduce risk.
Right.
So we were doing all the things wecould possibly try to do to try to
(06:51):
prevent it from really kicking in.
Um, and he really, I mean, he went 10years with antibodies before his blood
sugar was high enough to diagnose him.
And we were.
He's always been thin, he's alwaysbeen small, but so was I and so was my
husband when we were, when he were, wewere little and he was just so tiny.
And he, we ate a big dinner.
(07:14):
Think it was like spaghetti.
It was something carby, and then wehad a campfire outside and they were
making s'mores and my son came in.
I looked at him and Isaid, do you feel okay?
He said, I don't.
I don't really feel very well.
And he was just the wrong color.
He was like, pasty, white looking.
And I thought, oh.
So I had him go wash his hands andwe checked and his glucose was.
(07:34):
I don't remember what it was now.
Four or 500.
Um, it read on the meter.
Oh, I remember now.
It was, it was um, 367, the firstcheck, and then 412, the second check.
And I said, all right, bub, this is it.
Like this is what we knewwas gonna come, it's here.
And he looked at me and he said,maybe just gimme some insulin.
Right.
I can just have some of yoursand then I'll feel better.
(07:54):
And I was like, I startedcrying all over the place.
Like I was like, yes, I'llget you a glass of water.
And then I went in the other roomand cried my eyes out for a bit.
'cause he was just like, okay, yep.
I guess I need some insulin.
And I was like, but he was okay.
He just kind of rolls withit, which is just interesting.
So totally different.
I didn't go through the what'shappening to my child or the
deathly ill, and several tripsto the er like many people did.
(08:18):
So I think I had the biggest shock whenthey first told me he made antibodies.
I don't remember this, butmy mom reminded me recently.
I. I called her, I was at theUniversity of Colorado Hospital.
That's where we lived, not atthe hospital, but in Denver
from the early research studies.
And I called my momlike hysterical sobbing.
I have, I remember sort of doingthis, but apparently I'm like,
(08:39):
trauma blocked it outta my head.
And she thought, she thought she was gonnahave to call like the fire department
or something to help me like some.
I'm like, no one's being attacked.
No one's.
Instead, I just gimme a second.
And then I told her that he was makingantibodies and he was gonna have type
one diabetes like me, but then, you know,10 years is a long time to process it.
So he was a little calmeronce things started for us.
(09:01):
But right after diagnosisis a really hard time.
For most families, for sure.
So what do you guys remember aboutat the hospital, early days at home?
What do you think?
Jessica (09:11):
Tavia, as someone who already had type one, one of the hardest
things for me as a parent that hadno experience with type one, you go
through, or I don't know if everyonegoes through this, but you just are
trying to figure out why it happened.
You're trying to make sense ofwhere it came from and you go
through this reel repeatedly.
I would say the first coupleyears, to be honest, I did.
(09:32):
And I don't know, maybe it's differentwhen you already have type one.
I don't know if you processed thaton your own and then you, your
son was able, I, I do wonder that.
Tavia Vital (09:43):
I like counted out the illnesses that had fe... like when he
was six weeks old, he had RSV, I mean, hego to the hospital, he couldn't breathe.
You know, like he had to havesuction, suction out all the
respiratory infection stuff.
And I was like, I bet that counted.
That started the countdown ticker.
Yeah.
It probably predisposed his body.
And then somebody fed him ice creamwhen we were like doing no dairy until a
(10:04):
certain age because there was a study thatcame out that said that you shouldn't,
and I was like, that person gave himdairy, even though we said not to.
And that totally sped upthe process in my mind.
Right.
It wouldn't have mattered right forhim if that trigger was already tripped
by the RSV or the first flu he hador whatever, each insult that happens
to the body once that path starts.
I know this logically,but I wanted there to be a
Jessica (10:27):
Yeah.
Tavia Vital (10:28):
Pinpoint reason that I could like focus that.
Jessica (10:30):
Yeah.
Tavia Vital (10:31):
Upside, anger and sadness and all that yuck
on that, that moment totally.
Jessica (10:37):
I think, uh, that's good to hear.
It's, I guess it's just human nature.
You wanna solve the problem oryou wanna know why it happened.
Um, but that was kind of where Iwas at those first couple years.
I never slept because I was so losttrying to get it all figured out and
knowing everything depended on me.
I started drinking alcohol more.
I mean, it, I didn't, it wasn't a bigdrinker before, but I convinced myself
(10:58):
that, that that was helpful to numb myselfto get through 12 to 15 shots a day.
I am a perfectionist, sodiabetes was especially difficult
because it's not, uh, perfect.
You can't control it and you can't,no matter how much, I mean, obviously
the work you put in is reflected oftenin the A1C should clarify something.
Tavia Vital (11:20):
I just thought about this, Jessica, you said 12 to 15 shots a day.
You mean finger pokes and insulininjections, not shots of alcohol per day.
Jamie (11:29):
I was thinking that too.
Like
Tavia Vital (11:31):
I was like, you know, I better just back this
up a little bit and just,
Jessica (11:34):
I'm a small person.
Tavia Vital (11:35):
Make sure we're clear.
Jamie (11:37):
You handle it well.
Jessica (11:38):
No, I isolated myself.
I was already an introvert, butjust dealing with the trauma and the
massiveness of such, it's just anenormous disease to manage, and you
can't, you don't even, it's consuming.
It's, it's all consuming.
You go into a vortex and you, youbasically don't have the energy
to try to teach people or to, tothink that they can understand.
(12:01):
So, or at least I didn't.
But then on another front, I wouldalso talk about it all the time.
I think I kind of became the diabetesmom or the diabetes lady, and I don't
think there was a way around that.
I'm a little embarrassed looking backthat, that, you know, even at the grocery
store, I would talk to the clerk and itwould come up as they were checking the
extra vegetables that I was getting,you know, oh, well I have to get these
(12:24):
because my daughter just got diagnosed.
And
Tavia Vital (12:27):
because you needed that connection somehow,
Jessica (12:29):
you needed someone.
It's not like an easy.
Tavia Vital (12:31):
That when you were just like anybody that could be
within earshot trying to reach outand make a connection somewhere.
Jamie (12:37):
Yep.
Tavia Vital (12:38):
That makes sense.
Jessica (12:39):
And then the other thing that I did, which looking back
made it harder was I, I triedto launch back into normal life.
I tried to just pretend likewe could just jump back in.
We could sign up for those summercamps when she's four and a half
years old and everything could work.
I would just have to.
Be there somehow doing 12 shots andnot alcohol shots, insulin shots,
(13:01):
managing everything from the sidelines.
Yet my life would continueon as normal, you know?
And I think looking at,
Tavia Vital (13:08):
and you would keep doing all the things you did as a mom and
as a, as an adult along with all thediabetes things, and you can make it work.
Jessica (13:15):
Yeah.
I was totally, everything was gonna goback, literally like the next two weeks.
It was just, we got this, we can handlethis, we're gonna steamroll forward.
Obviously all those factors combinedis just a kind of a disaster.
Looking back, I don't
Jamie (13:29):
slap in the face
Jessica (13:31):
a disaster.
I really was.
But yeah, we made it through.
Tavia Vital (13:34):
What was it like early days for you, Jamie, you guys at home?
Jamie (13:38):
Well, at the time that Ellie was diagnosed, so this was just over four
years ago, so Ellie was diagnosed andI think it was three days later, my
husband was diagnosed with PTSD from work.
Um, he's a police officer.
Me not knowing what his triggerswere, what was going on with
him, what his therapy like.
He, he, he is an introvert himself,so he kept that all to himself.
(13:59):
So I felt like I didn'twanna put more on his plate.
So I just took over everything and,you know, don't worry about it.
I got it.
I got it.
And I could feel myself getting likemore and more wound up, like tighter.
Like I just, I, something wasgonna give, I'd cry in the
shower that way he couldn't see.
Yeah.
It, it was everything.
And of course, she's 21months old, so trying to eat.
(14:19):
What can we give her?
What is she going to eat?
How much do I bolus?
Did I give her enoughfood for the insulin?
Did I give her enoughinsulin for the food?
Like it was just all consuming.
So I ended up being able to take,I think it was 37 weeks off,
um, for critical illness leave.
Um, her pediatrician signed off because ofthe age that she was at, and just because
(14:42):
it is life changing, I mean, as muchas you wanna pretend that oh yeah, you
can still live with it and it's normal.
When it's brand new, there is nonormal, it is like walking on lava.
So, um.
Yeah, so I was able to take the37 weeks off and try and manage.
Yeah, here in Canada, cannabisis legal, so I actually did get
a prescription from my doctor.
(15:03):
Tried that to just kind ofrelax at night, you know, just
take some of the weight off.
Thankfully, I didn't, I become toodependent on it, like every three or
four days, you know, maybe step outside.
But yeah, it just, that wasn'tworking, so I just stopped that.
But yeah, so it was a long, long firstyear because between that and the therapy
that my husband was going through, theywere recommending that he get outta the
(15:26):
house for four hours at a time becausehe had to work his way back to being
able to work and be away from the house.
And I just felt like, okay,they don't understand.
How can they take my support away?
And here I am by myself.
Trying to keep my kid alive.
And I remember one time we did a sensorchange and it was just after supper
time and the sixes have a two hourwarmup window and she started to go low
(15:50):
and we didn't know what was going on.
And we're like, Ellie, wake up.
Wake up.
And she was starting to go unconsciousand like we're squeezing juice into
her and like doing whatever we can.
We called 9 1 1.
Our neighbors are allconcerned and we're like.
Yeah, she just had a low,like, you know, expect it more,
we're gonna be that neighbor.
Right?
So that was really scary inthe beginning just to be like,
(16:12):
oh, so this is our new normal.
And of course, and she's two years old, sotrying to get anything into her and she's
fighting and she wants to go to sleep.
And so yeah, that was, uh,really rough in the beginning.
And like you said, talking toanybody like diabetes just comes
up in conversation and mm-hmm.
My husband's family is all around us,but his sisters and stuff, they work
(16:33):
full-time jobs and they're husbands.
And my, at the time, my mother-in-law,step mother-in-law, she worked as well,
but she took the grandkids quite a bit.
While she wasn't comfortable withthe type one diabetes, and it's not
something you can push on somebody.
And so we were on our own littleisland and doing our own thing.
Tavia Vital (16:54):
My experience there is, it's different because the role
that I was in already, I alreadywas working as a diabetes educator.
It was already, around a group ofpeople that focused on people's
health who live with diabetes.
So I could go to work and I couldtell people what was going on
and they wouldn't be completelyoblivious to what I'm talking about.
(17:16):
And so I had a little built in work,um, support that, and my mom, who.
My parents raised me through thedark ages of type one diabetes.
Yeah.
So they, they don't understanddiabetes type one management now
because the insulins are different.
The technology didn't exist, you know,but they understand the spontaneity of
it and the things that you have to do.
(17:37):
To try to get a routine and thechallenges and the frustrations and
the imperfection and the, and theroyal mess ups where you give the wrong
kind of insulin or you totally forgetthe insulin at home and you're out
to eat or illnesses and what it does.
You know, they, they understood that.
And so I had some support built in.
Was was just hugely helpful and whenI started working at IDS I noted this
(18:01):
common theme that you guys are sharing.
Your experiences were totally differentwith the diagnosis story, right?
The way that you guys arrivedat the diagnosis is different.
The ages of your kids different,but you have this common thread
of, of that initial overwhelm.
It's just huge.
And the feeling that you can't get itright no matter what you do, and trying
(18:21):
to find connections and feeling isolated,it's just, it's a part of being a parent.
Diabetes or not, and then you throwdiabetes in there, type one diabetes,
and then it's sort of like, it's likeexponential the amount that you can feel.
You had no idea that you could feelthis many feelings all at once, right?
Jessica (18:38):
For us too.
Like Ellie, she was born with acondition called Danny Walker Syndrome.
So it's a spectrum.
And thankfully she's on the verymild end, so she has slightly
extra fluid on her brain.
So she was delayed withwalking and all that stuff too.
So trying to, you know, talkto other parents about your kid
and you're like, she's not thereyet because of the Danny Walker.
Oh.
And she has diabetes.
(18:58):
You know, I feel like I'm likethe one that has her kid in
bubble wrap and like, well she,you know, like, we can't do that.
We can't do that.
You know, so it was during Covid andtrying to relate to other people,
and it was just not successful.
Tavia Vital (19:10):
So what, what do you think, this was something I had asked
you guys to think about ahead of time.
If you could go back in time andtell yourself something to let you
know that it would be okay, what doyou think would've, or that someone
else could've told you or send you?
That might have been comforting.
Jamie (19:26):
I know for me, like joining all these groups for diabetes and stuff, and
you're seeing these people that are likethree and four years in and their kids are
older and they've got those straight linesand you're like, why can't I do that?
Like, you're striving so hardto, you know, get your kid to
that spot and they're like, yes,we're doing this, we can do it.
Or constantly checking the time and range.
Don't do that.
(19:46):
Like I think that's part ofwhat caused my anxiety, because
I was like so hung up on that.
Like, why can't I get this right?
Why are they a better parent than I'm?
What are they doing that I'm not?
And it was just so hard that way to justsit back and be like, that's not us.
Jessica (20:01):
I think for me, it would've been nice to hear you're gonna
learn how to play a poor hand.
Well.
You've been dealt a bad deck ofcards and what you're gonna learn
is how to play it well, and you'regonna need strength to do that.
And you're also gonna learn, it actuallyshows you what love really is, that I've
kind of seen that through the diagnosiswith, you know, the, obviously it's a
(20:22):
struggle in a marriage to go throughsuch a hard diagnosis with a child,
and yet you hopefully keep comingback to each other and it's not easy.
The help that you get, theconnections that you make, it
really does show you where love is.
In these kind of small places.
Even a grocery store, whenyou talk to the clerks
Tavia Vital (20:40):
like just the random acts of kindness and the, and the
occasionally when you reach out andyou get a good connection, even for a
minute, it's a really good perspective,but I never thought about it like that.
Jessica (20:49):
It would've been nice to hear like, don't worry, you're angry, but
it will subside the anger subside.
And you still won't have good sleep,but life does can start to feel
more normal after a couple years.
Jamie (21:02):
Yeah.
Yeah.
Tavia Vital (21:02):
And you can live many years without sleeping the whole night through
consecutively, and you'll still make it.
Right.
Wouldn't that be good to know?
Jessica (21:09):
Yeah.
Tavia Vital (21:10):
Sometimes it doesn't feel like it, but truly.
Jamie (21:12):
You may age a little quicker, but
Tavia Vital (21:15):
Right.
True enough.
Yeah.
Jamie (21:17):
I, I found, um, for us trying to sleep through the night, I actually
had her in our bed because I was soafraid I wasn't gonna hear the alarms.
Jessica (21:24):
Mm-hmm.
Jamie (21:26):
That was like my biggest thing.
Like, oh my God, am I gonna wakeup and she's gonna be unconscious.
Like, I was so paranoid about that.
In the beginning, thankfully shedid night feeds, so we would do like
the little sippy cups and she woulddrink the chocolate milk and we did
the fair life 'cause high protein,less sugar, like we did all that.
And then one day she just reachedthe age where she's like, Nope,
I'm not doing night feeds anymore.
So that we had to go tomini dosing glucagon.
Jessica (21:48):
Wow.
Jamie (21:49):
So like at any moment things can just change and you
have to learn to roll with them.
And it was just, have youuh, heard a sugar pixel?
Jessica (21:57):
I actually just got one to give to the school.
I'm a little delayed.
They have a Glo-cose,but um, there's another,
Jamie (22:02):
we have two sugar pixels and one is in our bedroom
and one is on our main floor.
The teacher that we had,she didn't want one.
Just outside of her comfortlevel, which I understand.
So next year she may have onein her classroom, but those
are the best things ever.
Tavia Vital (22:17):
Because then you can sleep.
Jamie (22:18):
Yes.
Tavia Vital (22:18):
You know that you're gonna get a alerted
and and you're gonna wake up.
Jamie (22:22):
And I have the alarm on the lowest setting and I can still
hear it through my whole house.
So I know I'm not sleepingthrough and my husband too.
There were a few times that he wason nights and I was sleeping, and of
course it had been a long day, I wasexhausted and I just didn't hear the
alarms on her pump or my phone or,and we had a few arguments about it.
And of course it scared me too becauseif I wasn't waking up to these alarms
(22:42):
and he's ha... not able to leave work,like thankfully he's a police officer,
so lights and sirens if he needed to.
Just to have that peace of mind forsomething to wake me up and know 'cause as
soon as it will go off, I'm like, I'm up.
So he wouldn't have to worry.
So he knows it's being handled and yeah.
Tavia Vital (22:57):
And I think it's important to know that as a
parent, it happens to everybody.
Jamie (23:00):
Yes.
Tavia Vital (23:01):
I mean, I'm sure there are some parents out there,
there's probably plenty of themthat never sleep through an alert.
Like they could just be up.
And I'm not one, I, I'm tired.
Right.
Tired at night because we'regetting, getting interrupted
sleep because of type one.
I mean, not all the time now, right.
But yeah.
But there are just times wheredoses need to be adjusted.
Their physical activity was different,the food was different, and we're
(23:22):
gonna get woken up at night.
And, um, between my son's alerts andmy alerts, I mean, I don't sleep right?
Sometimes.
Jamie (23:29):
Yeah.
Tavia Vital (23:29):
Sometimes we have a run and I'll have a whole week
and I'll be like, oh my gosh.
I didn't wake up for anybody'salerts except for the alarm clock.
It's amazing.
But totally you're gonnasleep through alerts and it's
terrifying when it happens.
The first couple of times lessterrifying for me because again,
I, I've had type one for 43 years.
I haven't died yet, and so chancesare pretty slim that something that
(23:52):
dramatic would happen and I wouldn'twake up if glucose was that low.
And same for my son.
He feels as low.
He's old enough and he has symptoms.
It's different for each person whetherthey get low glucose symptoms when
things are really low at night.
So it's good that youguys have some tools to.
When you, when you know like, okay,we've been sleeping through alarms,
we've tried all the differenttricks, like let's do this.
(24:14):
That's nice.
Jamie (24:14):
Yeah.
They're a lifesaver though.
Like literally.
Tavia Vital (24:18):
I'm gonna put ours back in my son's room because
he's a teenage boy and they canactually sleep through fire alarms.
Did, you know?
So he doesn't wake up for anything.
I have to go in and likephysically wake him up and be like.
Your sensor says you're low.
Are you low?
Jamie (24:31):
Ellie sleeps like the dead.
Like now with having themini dose glucagon, she'll
feel me pull down her pants.
'cause we always do it in thebutt and she'll be like, no mommy.
And she like kind of like putsup a small fight and then I give
her the shot and she rolls overand she goes right back to sleep.
Nothing happened.
So like, I guess that's a small blessing.
But I know the first few times, likethe finger pokes and the needles, when
(24:53):
she stopped crying, that was probablythe most heartbreaking because I'm
like, she's getting used to this.
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Tavia Vital (25:38):
I was just thinking about, you know, right now, you guys just
described how it was in the beginningand you're no longer in the beginning.
How do you feel when you think about yourchild's type one diabetes now overall?
Jessica (25:50):
I'd say about six months ago I went, I just kind
of took a turn and I was like.
That's enough.
How can I be a better role model and abetter caretaker kind of, I think it's
human nature, just naturally, hopefullywanna be better than we are or were.
And then, so that'swhen I stopped drinking.
I started cooking more meals on the table.
(26:11):
I can't say, I guess her numbers gotbetter, but it was more, I as a person
finally had the capacity to, I wouldn'tsay take better care of myself, but
just notice that I could be better.
And you stop trying to make senseof how it happened, why it happened.
The anger subsides every conversation.
When you see people, you're not tryingto like somehow configure diabetes in.
(26:34):
In fact, at this point Iactually make a point of trying
not to talk about diabetes.
So that's kind of where I'm at now.
Um, and then the control and perfectionthat you thought you had completely
now by the wayside and it kind of, it'salmost a relief knowing that we actually,
you are not fooling yourself anymore.
(26:55):
We're human.
We're battling this particular disease.
Other people are battling otherthings, but we're imperfect.
There's, there's nothing we cando about that except, you know,
keep trying as best as we can.
Tavia Vital (27:09):
Yeah, yeah,
Jessica (27:10):
yeah.
Kind of,
Jamie (27:10):
honestly, I call it the worst science experiment ever.
Never ends.
You never know fully how you'redoing with it, and it can
change at a moment's notice.
It's so what worked on the first dayisn't gonna work on the third day, and
it's gonna change again by the 10th day.
Jessica (27:27):
And then the sensor fails--again.
Tavia Vital (27:30):
Yeah.
Half a day of where you thought itwas working and then you realize like,
here's this new pattern emerging.
And it was really just the sensor.
Jamie (27:37):
That's it.
Or there's an occlusion or like,there's always something and it's like
you're trying to solve this mystery.
Well keep your kid aliveand make the best of it.
And like I, I definitely, so Iwas diagnosed with PTSD and severe
anxiety because of how young she was.
With everything going on withmy husband working at the
(27:58):
hospital, I've learned to just.
Kind of sit back more.
Tavia Vital (28:02):
Mm-hmm.
Jamie (28:02):
Instead of trying to control everything.
Tavia Vital (28:04):
Mm-hmm.
Jamie (28:05):
To just sit back and kind of go, okay, well that didn't work.
Let's try this.
Jessica (28:08):
Exactly.
Jamie (28:08):
Instead of being like, why isn't it working?
Jessica (28:10):
Yeah.
Tavia Vital (28:11):
That's really helpful.
Jessica (28:11):
I learned to, especially for her benefit too, is seeing it, and
I think I learned this from some ofthe group work that we did at IDS and
Tavia Vital (28:20):
Yay.
Jessica (28:21):
Seeing things more as data.
If a day is really bad, I used to beatmyself up, you know, it would just be,
I couldn't stand to see the numbers,but now it's like, okay, let's look
back at the day, what could have gonebetter and not calling the school all
the time to, you know, just kind of.
This happened today.
We're gonna try again tomorrow,and that's become a lot easier.
Tavia Vital (28:41):
Great.
Jamie (28:42):
We were, um, very fortunate with the daycare that we had,
so she was in a home daycare.
The girls, she decided that, well,they were moving where she was moving.
It didn't make sense for us tostill continue on and they wanted
to expand their family more.
So we then had to find a new daycare.
So we got turned down by numerous homedaycares because it's a liability.
They didn't want that.
(29:03):
We found a licensed daycare and theywent above and beyond like phenomenal.
And to this day, like a coupleof the girls still watch her, you
know, if we go out for something.
So like that has been just greatbecause they know, they understand.
But now that she's in school andstarting back at square one and having
to educate the nurse, the teacher,the principal, and we don't have
(29:27):
school nurses, we just have two.
And I'm not even sure if they're nursesor psw, personal support workers.
Um, but one goes in for thefirst nutrition break and one
goes in for the second one.
So all day long, I'm constantlylike, they're like, how much
do you want us to bolus?
This is how much she's got on board.
This is how many carbs she ate.
Oh, she changed her mind, liketrying to balance all that.
(29:49):
Then she's in an afterschool programon top of it, and so there's another
person to contact all day long.
Um, I'd love to say that, you know, wejust roll with it and let it happen.
But you know, we've had asituation a couple times with the
afterschool program where they'veover bolused quite significantly.
My husband or I are leaving work, orhe's off, but has some stuff to do so
(30:12):
he put her in the afterschool program.
He's had to go pick herup and it's uh, yeah.
As much as you wanna be like,yeah, we've just learned to
roll with it as best as we can.
It's still like you're on your toes.
There's no shutting it off.
Tavia Vital (30:23):
That's true.
That's true.
How old is Grace now?
Jessica (30:25):
Grace is almost eight.
She'll be eight this summer.
Yeah.
Tavia Vital (30:29):
And Ellie six now.
Jamie (30:31):
Yeah.
Just turned six on Friday.
Tavia Vital (30:33):
That's funny how time passes.
Jessica (30:34):
I'm trying more now as she's, she is starting to
become a little more independent.
She catches her lows.
She has a little candy bagthat we did have to go through.
She was sneaking thecandy for a little bit.
But you go through these trial and errorsand you have to keep trying and you have
to say, okay, we're gonna try again.
And you know, you'renot supposed to do that.
But just making sure to, likethis morning after her fifth
sensor change in the last day.
(30:57):
Two days just saying, grace, you'vebeen incredible the last two days.
You just making sure sheknows I'm acknowledging how
hard this must be for her.
And it's, it's hard for me to,but like she's the one who has
this burden the rest of her life.
Yeah.
Uh, and i's good, feel like as she'sgetting older, that's really helpful.
Uh, especially on the harder daysand telling her, you might be a
(31:18):
little tired today because I hadto roll you over a lot last night.
You were on your sensor.
Just, you know, give your, cut yourself alittle bit of a break if you feel tired.
Tavia Vital (31:26):
That's nice.
Jamie (31:27):
Yeah, we do that with Ellie too.
You know, like, she'd be like,I, I don't like my diabetes.
And we try to explain it to her too,like, she's got kids with autism and
her class and her school and stuff, andwe'll be like, they're different like
you, only their brain works differently,whereas your pancreas works differently.
You know, like ev, nobody's perfect.
Nobody's a hundred percent.
(31:47):
You know, we all have theselittle quirks about us, and you
know, you do the best you can.
And, but yeah, she, I try not to lether, see me get frustrated about things.
It's really hard when yousee them trending down and
you're like, drink your juice.
Drink your juice.
Okay, can you drink your juice please?
So it's like, okay, we've got candy.
What do you want?
Like, trying to encourage her.
(32:08):
But we've always said to her like, shecan have whatever she wants food wise.
Just let us know so we can bolus you.
That way she doesn't feel like she'snot getting things other kids are.
Like even at school, if somebody bringsin cupcakes, yep, she can have one.
You know, we'll do what we can.
Or, you know, her numbers arethis, give her this insulin.
(32:28):
But we've always tried to make surethat she's like the rest of the
kids with food and everything else.
Jessica (32:34):
Have you guys heard of that poem, Welcome to Holland by Emily Kingsley?
It basically talks about a parent.
A child with a disability and how you,you think you're going to Italy and
you're so excited and you got all the tourbooks and you got on the plane, but then
the plane lands and you're in Holland.
And you're angry and youdidn't wanna be in Holland.
(32:54):
And then as you can imagine, it goes intothe details of you now have to open your
mind up and let go of the fact that you'renot in Italy in order to enjoy Holland.
And I just, that was actuallyextremely helpful for me.
I read that poem, I rereadit, and it helped me kind of
move forward into Holland.
Tavia Vital (33:15):
That's amazing.
Jessica (33:15):
I guess you could say.
Jamie (33:16):
Yeah.
Instead of like even being a momand this is what you expected it
to be like, but this is what it is.
Mm-hmm.
You know, you have to accept itand move forward or I, I call
it kinda like a pity party.
Yeah.
You can stop and enjoy the party oryou can get stuck there and that's it.
Jessica (33:33):
It's very painful to realize that you, one had dreams for your child.
You don't realize until the dreamsare completely different, right?
It's painful to realize that it's never,it's not gonna be how you pictured and you
don't even realize that you were actuallypicturing things a certain way until
you can no longer picture them that way.
And that was initial, but now I'm kindof moving past that, which feels good.
(33:55):
There's still pain there, but
Tavia Vital (33:58):
yeah, for sure.
Jamie (34:00):
I always imagine like Christmas time and stuff, and the baking and
you know, and then I attempted it onetime and she's trying to shove things
in her mouth and I'm like, I haveno idea how many carbs are in that.
Like, stop, stop.
Like all of a sudden my like bloodpressure's through the roof and I'm
like, okay, this wasn't a good idea.
So now we do the like.
Pre-bought frozen stuff.
'cause I'm like, eh, if she eatsthat, I can kind of still carb count.
(34:21):
But you know, like all of a sudden she'sdumping half the flour on the table
and half in the bowl and then licking.
And I'm like, I don'tknow what you're doing.
Jessica (34:29):
Sometimes I watch those moments and I just wonder what it would be
like to be able to enjoy it, you know?
And I, that makes me sad still sometimes.
Jamie (34:38):
Yeah.
Yeah.
And unfortunately it'sthe new normal, but.
Jessica (34:43):
Then you say, oh, well moving on onto the next.
Tavia Vital (34:45):
Yeah, that was a moment that just closed now.
Okay.
Let's see what else is going on present.
And my son is getting to, you know,he is one year left in high school and
thinking about going to college and I'mhoping that he picks a college nearby
so that he could still live at home.
Which, at least for anothercouple, he's young for his
age as far as developmentally.
(35:06):
You know, like some kids that ageare out like in leadership councils
and they work a job and they dosports and they do their schoolwork
and they, but that's not my son.
My son is.
He does have, uh, he has ADHD and hehas sort of slower processing speed,
some frontal lobe slowness, let'ssay executive functioning slowness.
And so he, you know, the idea of himgoing out to college and then with
(35:30):
type one diabetes where he doesn'twake up for his alarms and I'm
like, we have to figure this out.
We only have a year left before.
I don't wanna be the one that puts my footdown to say, you're not gonna be safe.
Jamie (35:39):
Yeah,
Tavia Vital (35:39):
So you can't.
So we have to figure out a way to makeit, make it so he can be his best self
and support that, but also keep them safe.
Jamie (35:48):
So I've already looked up drinking and everything else and
just so that way I can be prepared.
Or like the Juice Box podcast, likethe after dark episodes and like
Tavia Vital (35:58):
yeah, good.
Jamie (35:58):
'cause I don't wanna be caught off guard.
And thankfully my husband has a coworkerand she has type one, so I can kind of be
like, Hey, what happens when you do this?
Or my cousins also type one and be like,so when you were this age, how like.
You know, to kind of get ahead of it,
Tavia Vital (36:14):
you could ask me too, but not well... I'll tell you some
safety things and some experientialthings that I learned from and
learned as a diabetes educator later.
Jessica (36:22):
That actually has been probably the most helpful for me is at IDS working
with you guys who have been throughdiabetes for the last 15, 20, 30 years.
I think is more helpful hearing yourperspectives than fellow caretakers
who are just kind of like scramblinglike myself because it kind of, I see
(36:42):
the light at the end of the tunnel andI can get better perspective that way.
Tavia Vital (36:46):
That's us.
Part of why we do it, because you know,we have to have the stinking thing.
We might as well be able to use that tohelp other people not struggle as much as
some of us struggled on the way through.
It's a benefit that we can giveand we love giving it, so, yeah.
Jamie (37:04):
Yeah.
Thank you.
Yeah, it's, it's like our teamthat we have here in Canada, our
doctor's office and their nurse andeverything else, and they recommend
changes and stuff, but every timethey recommend a change, I'm like, I.
Tavia, this is what they mentioned.
What do you think?
Like just because you live it.
So like they have office hours of this tothis and on weekends if something happens
(37:24):
you can't get ahold of anybody, right?
Whereas I can send you an email realquick and or in a text being like,
check your email and you know, getan answer back usually same day.
And you know, it's peace of mind.
Tavia Vital (37:37):
Yeah.
Yeah.
We have a great thing going.
Yes, we do.
I love, I love my team and Ilove my job and I love working.
It's been fun for me towork with families too.
I have a special bond with parents,though being a parent of a kid with
type one diabetes, that that's beenpart about my job that I really
enjoy getting the opportunityand the time out for caregivers
(37:57):
groups that we started a while ago.
It was another good opportunityto be able to interact with
people going through the muck.
Jessica (38:04):
In that group.
I feel like all I did wascry on that in those groups.
I feel bad for the people that
Tavia Vital (38:11):
that's what happens to everybody.
I mean, not everybody, but like at leastone, if not two or three people, if when
we have a good group size, like it's justa, it's a place where you can breathe.
Jamie (38:21):
Yeah.
You know, and, and be heard.
Tavia Vital (38:22):
And you know that nobody on there would be like, what
does the matter with her type oneis not that hard, for your kid.
You know.
Jamie (38:29):
I have a, a neighbor actually, and she has a little guy who's type one.
And next year our twowill be in the same class.
Like we've actually asked for them tobe in the same class so they can kind
of, you know, learn from each other.
Mm-hmm.
And there's nights, youknow, here's another low, or,
hey, do you have any Zofran?
Or, you know, like.
I literally can see herbackyard from my front porch.
(38:50):
So like it's nice to have that so close.
So Fran, yeah, sorry to have that likeso close and about the only person that
we have watch Ellie on a regular basis.
And actually like if somethinghappens to my husband or I, that's
her guardian is my cousin, who'ssister is the one with type one.
She's experienced with it.
She has that resources to her to help out.
(39:13):
You know, 'cause likethat was another thing.
Should anything happen to us,nobody knows how to handle it.
What did we do?
Jessica (39:19):
I think that was hard for me and still is, is how relationships
have changed after the diagnosis.
Based on how or lack of involvement,lack of interest, lack of just
general knowledge, understanding.
You just can't leave, I can'tleave her with even my own parents.
And so it's, that's, I haven'treconciled that in my mind yet.
(39:40):
I don't know if I ever will.
It's, I guess you accept it,which I have, but it's, doesn't
make it easier or less sad.
Jamie (39:47):
No, I 100% can relate to that.
Like my family is at least an hour away.
Mm-hmm.
Some of them are more like threehours away, so, and I lost my mom.
10, 11 years ago now, and she was a nurse,so she would've been like so hands on.
Mm-hmm.
And to not have that.
Tavia Vital (40:07):
Yeah.
Yeah.
So that's another piece tothe puzzle too, is the ongoing
relationships and figuring those out.
Which ones can use, still build onfor understanding your child's type
one and keeping them safe so that.
They can spend time in other people'shouses and you can take some downtime
for you to go do some things.
That's always a challenge for sure.
Jessica (40:28):
and it is getting easier as she gets older and can
catch her lows for, for sure.
And she make things easier, you know,just being able to use the phone
to dose versus shots like every,
Jamie (40:38):
yeah.
Ellie still doesn't feel.
Highs or lows.
And so, and we're actuallyhaving our first friends party.
Yeah.
And all the parents arelike, do you mind if I come?
And I'm like, of course.
Like, 'cause I don't wanna be that parentthat's like, oh, we don't want you there.
And then all of a sudden liketheir kid has a party and be
like, do you mind if I come?
'cause she's got type one.
Like I found, like that's been so hardto just let her be a kid in that sense.
(41:01):
But without being that mom that'slike, so I'm just gonna sit in
your driveway while she parties.
Tavia Vital (41:05):
That's a joke, by the way, because, oh, I think most all moms of
kids with type, especially young kids,with type one, we're always nearby.
Like you're going to this big event forthe school at the, you know, in the next
city, I guess I have some errands to run.
I'll just be in the parkinglot and I'll do those errands
while you're eating lunch.
Jamie (41:21):
We volunteer to chaperone.
Like we, we volunteer to be an extra hand.
Like my husband and I actuallywith our work schedules, I am
off days that he works, so thatway one of us is always available
should something happen at school.
My workplace, and I've kind of buttedheads a little bit on that, trying to get
them to understand and everything else.
But, uh, it's worked upfor the best for her.
(41:43):
But come summertime, like again, it'sgonna be another challenge because
we can't send her off to day campsbecause most of them in this area are
run by teenagers who aren't legallyresponsible and there's no nurse on staff.
So it's like, how do you do this andbe a productive member of society
(42:04):
and make sure your kid's safe?
And it's, that's a struggle.
Jessica (42:09):
I have gotten better at asking people who seem maybe willing to take
it on, and I am actually surprised.
There's been two, maybe three, likea friend's play date or a birthday
party, which was at a doctor's house.
So it was a doctor, butthey did a good job.
It feels good when that happens forthe first time because you start to
see, okay, there's possibility here.
(42:31):
There is freedom on the horizon.
It's just, it's gonna be theselittle one-offs for a while until.
She can do more herself.
Jamie (42:40):
Yeah.
Tavia Vital (42:41):
What about anything that you want to relay to other, say, newly
diagnosed families or anybody who'sbeen sort of rolling through it all
over a few years now, kind of in the,in the situation you guys are both
in anything you wanna leave 'em with?
Jamie (42:56):
It does get better.
This is your new normal,but it does get better.
What seems like such a big deal in thebeginning as you learn to handle it.
It's almost like your firstsickness with a child.
Like a cold, or you're like,oh my God, what do I do?
You know, and like, are they okay?
Are they in pain?
And then the next illness, you'relike, okay, well this worked last time.
Let's try this.
You know?
Like it gets better once youget more comfortable with it.
Jessica (43:19):
Yeah, and more knowledge.
I feel like now I can, I can diagnosethings so quickly with all the information
that I've absorbed the last two yearsor, and I know how to look things up
and where to find information and who tocontact, that it's not stressful anymore.
It's just a job.
It's more, yes, more.
It's a job that you do and thenit's done and then you have more
job and it's kind of a sporadic job.
(43:41):
Kind of a bit unpredictable withno monetary reward, but people
always tell you, oh, it gets easier.
Like when you have babies andthey're like, oh, when you get older.
I never liked hearing that.
It does, but it really does.
It gets more, you just get better.
That's what happens.
Tavia Vital (43:56):
Yes.
So the diabetes doesn't get really easier.
It changes all the time.
There are always curve balls coming at us.
Jessica (44:05):
You're gonna be forced to get better.
You're forced to get better.
Tavia Vital (44:08):
Right?
You get tougher, you get more.
You get skills under your beltand you get more confidence
with what needs to be done.
And the acceptance of it doesn't need tobe perfect 'cause there is no perfect.
Mm-hmm.
Jamie (44:20):
I have to say, our last trip to emerge here, one of our nurses
was type one and the doctor that wason said to us because she saw that
we're four years in, what do you need?
Not, well, we're gonna try this and this.
It was, what do you need?
Yeah.
Because she knew that we'd been doingthis so long, we probably had a better
idea than she did, and like that was socomforting and we're like, let's try.
(44:41):
Zofran and then let's try an iv.
And you know, like, right, you got it.
Tavia Vital (44:46):
This is what we know she needs.
Jessica (44:48):
You've got it.
Yeah.
Yeah.
Jamie (44:49):
So it was,
Tavia Vital (44:49):
I think that's important because I think in the very beginning,
you just don't have, you can't have that.
You can't, you have to gothrough all of the mm-hmm.
Emotions and the knowledge thatyou need and the practice edit
and the skill building and therepetition to get where you are.
So I think that's really, that'sa good place to conclude for us
today, is just to let people know.
That it, it will get betterthan in the beginning.
(45:12):
In that you will, you'll makeit through and we'll figure out
what needs to be done, especiallyfor young children, right.
Jamie (45:21):
In the beginning, it's a scratched, foggy crystal ball.
It's a little clear.
That's the years go by.
Jessica (45:27):
Very tired.
Yeah.
Tavia Vital (45:29):
Today's session was really, it was really nice time to reflect back on
what things were like for Jess and Jamie,and even for myself when our kids were
first diagnosed with Type one diabetes.
What it felt like early days and thethings we struggled with, and that common
thread of just that overwhelm and anxietyand the anger, and we talked about how
(45:53):
coming through that was it a huge process.
It's life altering.
It's not easy.
We're all still tired all the time.
That doesn't go away, but that we findways over time to get connections made
and find what our kids really need to,to be healthy even though they have
type one diabetes and that we're alltrying our hardest to keep improving
(46:15):
what we can do as parents, and thatit is beneficial for all of us to work
with other people who we can relate to.
Intermittently, whether it's online or ifit's in a visit or it's in a group where
you can work with other parents who areworking on letting go of trying to over
control everything or handling emotions,learning how to process emotions.
(46:37):
Those are all helpful things thatwe've sort of waded through over a few
years time, and we're hoping that thisinformation will be beneficial to other
parents out there, whether it's a newdiagnosis in your family or you've been
wading through all this, I call it themuck, all the, the yucky stuff, the stress
and the imperfections, and the feelinglike a failure as a parent when things
(47:00):
don't go as desired, especially with typeone diabetes management for your kid.
Um, and just know that you'll,you will make it through, come
what may, good, bad, or ugly.
And that you can have find supportsometimes in surprising ways.
We hope that the information thatwe talked about today is beneficial,
and if anyone has questions aboutwhat services we offer for support at
(47:23):
Integrated Diabetes Services, or ifyou have questions about how to set up
a visit with one of our clinicians whoalso live with Type one diabetes like
myself or any of our other, my otherteammates, just reach out and let me know.
Gary Scheiner (47:34):
Thanks for tuning in to Think Like a Pancreas-The Podcast.
If you enjoy today's episode, don'tforget to like, follow or subscribe
on your favorite podcast app.
Think like a Pancreas-- the podcast isbrought to you by Integrated Diabetes
Services where experience meets expertise,passion meets compassion, and diabetes
(47:55):
care is personal because we live it too.
Our team of clinicians, allliving with type one diabetes,
understand the challenges firsthand.
We're here to help no matterwhere you are in the world.
The glucose management, the self-carestrategies, the latest tech, sports,
and exercise, weight loss type one,pregnancy and emotional wellbeing.
(48:17):
We've got you covered.
We offer consultations inEnglish and Spanish via phone,
video, chat, email and text.
Wanna learn more?
Visit integrateddiabetes.com oremail info@integrateddiabetes.com.
To schedule a consultation on behalfof Think Like a Pancreas, the podcast.
I'm Gary Scheiner, wishingyou a fantastic week ahead.
(48:40):
Don't forget to think like a pancreas.
Welcome to Think Like a Pancreas, the podcast where our goal is
to keep you informed, inspired, and alittle entertained on all things diabetes.
The information contained in thisprogram is based on the experience
and opinions of the IntegratedDiabetes Services clinical team.
Please discuss any changes to yourtreatment plan with your personal
(00:33):
healthcare provider before implementing.
Tavia Vital (00:35):
Good morning.
Thank you for joining our Think Likea Pancreas podcast this morning.
My name is Tavia Vita.
I'm a registered nurse, certifieddiabetes care and education specialist
with Integrated Diabetes Services,and today I get to host our podcast.
We are going to be discussing.
Uh, some of the details involved inwhat it's like when you have a child
(00:59):
with type one diabetes, thinkingabout the diagnosis, how things
start off, and then where you gofrom there and looking at things
from a now perspective looking back.
As many of you know, our team atthe Integrated Diabetes Services,
we all live with Type one diabetespersonally, so myself included.
I've lived with typeone for over 40 years.
I have two kids.
(01:19):
My oldest, who's now 17, was diagnosedwith type one diabetes at age 12.
In the times of Covid, so I know I'mnot alone with that diagnosis time.
With that said, I'd like to introduce mypartners today we have Jamie and Jessica.
So Jessica, will you tell us a little bitabout yourself and your daughter story?
Jessica (01:40):
Yeah.
Hey, Tavia, it's good to see you.
My name is Jessica and I, uh, we'rein Colorado here and my daughter
Grace, who's now almost eight wasdiagnosed at four and a half.
I do always love hearing otherpeople's diagnosis stories.
I, I'm not sure why that is.
I think it's kind of a community.
And you just, you're in the sameboat, but it's probably similar
(02:03):
to most other people's stories.
Two months after Covid, which waseven a mild case of Covid, she
started drinking a ton of water, andI remember those signs on the back of
the pediatrician's door, which I still,to this day, I have a note to email--
there's a lady who actually createdthose and just had them distributed.
So I, I, it's on my listto email her and thank her.
(02:23):
So I put the dots together.
But she started throwing up in themiddle of the night and she wasn't sick.
There was no fever, and that'swhen I realized-- there was
an intuition there for me.
I think I knew, but I didn't wannaknow, but I did rush to the er and
even I told the doctor when we gotthere, Hey, could this be type one?
I don't know how you test for that, but,and sure enough, we were transported to...
Tavia Vital (02:45):
That's amazing that they had flyers up that you saw at the
pediatrician office and that you thoughtabout it while your daughter was sick.
So that's pretty interesting.
Jessica (02:52):
Well, and you always think when you see those flyers, those people,
not us, you know, but you're reading itbecause you're, you're just waiting in the
pediatrician's office and you're absorbingall the stuff they have on the walls.
But I'm glad it wasthere 'cause it was us.
Tavia Vital (03:05):
Hey Jamie.
How about, tell us a bitabout you and your daughter.
Jamie (03:08):
Ellie was diagnosed at 21 months.
It was just after Christmas.
We thought for sure it wasjust a respiratory infection.
Her breathing was off.
She did vomit from time to time.
But at that age, you know, it justkind of gets chalked up to, oh,
she's got a virus from daycare or,so we didn't read too much into it.
And then her breathingcontinually was off.
(03:29):
So we thought, well, let's takeher to emerg to get checked out.
And so we took her, I think it waseight o'clock at night and it was
during Covid, so we didn't even havea doctor come in and visit us for the
first four hours that we were there.
Tavia Vital (03:41):
Wow.
Jamie (03:43):
So here she is, 21 months old, it's midnight.
So I said, we're going home.
Like I can't sit there all night with her.
So then the next morning I had to work atthe hospital, and so my husband brought
her in and of course he couldn't leaveher to go to the bathroom or anything.
So on my breaks, I would go down tothe emergency and sit with her so
he could at least go pee or stretchhis legs or whatever he had to do.
(04:06):
Well, near the end of my shift,she was diagnosed with respiratory
infection and severe constipation.
So we left the hospital,got home and-- he was home.
Separate vehicles 'cause I was at workand by the time I got home her lips were
white and we rushed right back and theydidn't even like make us triage again.
They just took us right back.
And um, the doctor that was on,he pulled down his mask, 'cause
(04:29):
everybody's wearing masks during covid,smelled her breath and said type one.
Jessica (04:33):
Wow.
Tavia Vital (04:33):
Gosh.
Jamie (04:34):
So we didn't even have blood work done until the very last visit.
So three trips to emerg in 36 hours.
She was in DKA.
Our family doctor said that if we waitedanother 24 hours, we would've lost her.
Yeah.
So here we are in Canada andthat was our fun experience.
Tavia Vital (04:50):
Your story.
Yeah.
Jamie (04:51):
So.
Yeah, same thing.
She was drinking lots,wetting through diapers.
I'd even change her once, twicethrough the middle of the night
thinking like, what is going on here?
You know, like, yeah, she's drinking more.
Does it make sense?
But I even have a cousin who's typeone, her other side of the family is,
they have some type ones in the family.
So I didn't even know really thesigns and symptoms to look for because
(05:13):
she was diagnosed at age seven andthat was like 30 plus years ago.
Tavia Vital (05:17):
Right.
Yeah.
Jamie (05:17):
So, you know, was it the same thing, wasn't it?
Tavia Vital (05:20):
Yeah.
But.
So, yeah, my son,
Jamie (05:22):
it was scary.
Tavia Vital (05:23):
My son's story's a little different because since I
have type one diabetes and I'm adiabetes educator, I know about
research studies that are looking forscreening risk for type one diabetes.
So my kids had already been enrolled in avariety of research studies since birth.
They actually took cord blood and testedand know that both of my sons have the
highest risk genes for type one diabetes.
(05:45):
So due to that, then we couldchoose to enroll in other studies.
So we were in a study called Teddy.
That monitor blood tests every threemonths and we brought in tons of
samples of other things that theycollected throughout the study.
And it's from birth until age14, um, or until someone converts
(06:06):
to having type one diabetes.
And so I already knewthat my oldest son, Isiah.
He already was making antibodies, sohe started making antibodies when he
was a toddler, and his A1C startedcreeping up when he was a young child.
And then we did whatever we thoughtwe could do to try to intervene.
Right?
Whether any of it worked or it just washow his body worked, who knows, right?
(06:28):
But we did the higher doses ofvitamin D and vitamins and Omega-3
and probiotics and, you know, we triedall the dietary things that at that
time, you know, not five years ago now,like 17 to 15 years ago, that we read
about may or may not help reduce risk.
Right.
So we were doing all the things wecould possibly try to do to try to
(06:51):
prevent it from really kicking in.
Um, and he really, I mean, he went 10years with antibodies before his blood
sugar was high enough to diagnose him.
And we were.
He's always been thin, he's alwaysbeen small, but so was I and so was my
husband when we were, when he were, wewere little and he was just so tiny.
And he, we ate a big dinner.
(07:14):
Think it was like spaghetti.
It was something carby, and then wehad a campfire outside and they were
making s'mores and my son came in.
I looked at him and Isaid, do you feel okay?
He said, I don't.
I don't really feel very well.
And he was just the wrong color.
He was like, pasty, white looking.
And I thought, oh.
So I had him go wash his hands andwe checked and his glucose was.
(07:34):
I don't remember what it was now.
Four or 500.
Um, it read on the meter.
Oh, I remember now.
It was, it was um, 367, the firstcheck, and then 412, the second check.
And I said, all right, bub, this is it.
Like this is what we knewwas gonna come, it's here.
And he looked at me and he said,maybe just gimme some insulin.
Right.
I can just have some of yoursand then I'll feel better.
(07:54):
And I was like, I startedcrying all over the place.
Like I was like, yes, I'llget you a glass of water.
And then I went in the other roomand cried my eyes out for a bit.
'cause he was just like, okay, yep.
I guess I need some insulin.
And I was like, but he was okay.
He just kind of rolls withit, which is just interesting.
So totally different.
I didn't go through the what'shappening to my child or the
deathly ill, and several tripsto the er like many people did.
(08:18):
So I think I had the biggest shock whenthey first told me he made antibodies.
I don't remember this, butmy mom reminded me recently.
I. I called her, I was at theUniversity of Colorado Hospital.
That's where we lived, not atthe hospital, but in Denver
from the early research studies.
And I called my momlike hysterical sobbing.
I have, I remember sort of doingthis, but apparently I'm like,
(08:39):
trauma blocked it outta my head.
And she thought, she thought she was gonnahave to call like the fire department
or something to help me like some.
I'm like, no one's being attacked.
No one's.
Instead, I just gimme a second.
And then I told her that he was makingantibodies and he was gonna have type
one diabetes like me, but then, you know,10 years is a long time to process it.
So he was a little calmeronce things started for us.
(09:01):
But right after diagnosisis a really hard time.
For most families, for sure.
So what do you guys remember aboutat the hospital, early days at home?
What do you think?
Jessica (09:11):
Tavia, as someone who already had type one, one of the hardest
things for me as a parent that hadno experience with type one, you go
through, or I don't know if everyonegoes through this, but you just are
trying to figure out why it happened.
You're trying to make sense ofwhere it came from and you go
through this reel repeatedly.
I would say the first coupleyears, to be honest, I did.
(09:32):
And I don't know, maybe it's differentwhen you already have type one.
I don't know if you processed thaton your own and then you, your
son was able, I, I do wonder that.
Tavia Vital (09:43):
I like counted out the illnesses that had fe... like when he
was six weeks old, he had RSV, I mean, hego to the hospital, he couldn't breathe.
You know, like he had to havesuction, suction out all the
respiratory infection stuff.
And I was like, I bet that counted.
That started the countdown ticker.
Yeah.
It probably predisposed his body.
And then somebody fed him ice creamwhen we were like doing no dairy until a
(10:04):
certain age because there was a study thatcame out that said that you shouldn't,
and I was like, that person gave himdairy, even though we said not to.
And that totally sped upthe process in my mind.
Right.
It wouldn't have mattered right forhim if that trigger was already tripped
by the RSV or the first flu he hador whatever, each insult that happens
to the body once that path starts.
I know this logically,but I wanted there to be a
Jessica (10:27):
Yeah.
Tavia Vital (10:28):
Pinpoint reason that I could like focus that.
Jessica (10:30):
Yeah.
Tavia Vital (10:31):
Upside, anger and sadness and all that yuck
on that, that moment totally.
Jessica (10:37):
I think, uh, that's good to hear.
It's, I guess it's just human nature.
You wanna solve the problem oryou wanna know why it happened.
Um, but that was kind of where Iwas at those first couple years.
I never slept because I was so losttrying to get it all figured out and
knowing everything depended on me.
I started drinking alcohol more.
I mean, it, I didn't, it wasn't a bigdrinker before, but I convinced myself
(10:58):
that, that that was helpful to numb myselfto get through 12 to 15 shots a day.
I am a perfectionist, sodiabetes was especially difficult
because it's not, uh, perfect.
You can't control it and you can't,no matter how much, I mean, obviously
the work you put in is reflected oftenin the A1C should clarify something.
Tavia Vital (11:20):
I just thought about this, Jessica, you said 12 to 15 shots a day.
You mean finger pokes and insulininjections, not shots of alcohol per day.
Jamie (11:29):
I was thinking that too.
Like
Tavia Vital (11:31):
I was like, you know, I better just back this
up a little bit and just,
Jessica (11:34):
I'm a small person.
Tavia Vital (11:35):
Make sure we're clear.
Jamie (11:37):
You handle it well.
Jessica (11:38):
No, I isolated myself.
I was already an introvert, butjust dealing with the trauma and the
massiveness of such, it's just anenormous disease to manage, and you
can't, you don't even, it's consuming.
It's, it's all consuming.
You go into a vortex and you, youbasically don't have the energy
to try to teach people or to, tothink that they can understand.
(12:01):
So, or at least I didn't.
But then on another front, I wouldalso talk about it all the time.
I think I kind of became the diabetesmom or the diabetes lady, and I don't
think there was a way around that.
I'm a little embarrassed looking backthat, that, you know, even at the grocery
store, I would talk to the clerk and itwould come up as they were checking the
extra vegetables that I was getting,you know, oh, well I have to get these
(12:24):
because my daughter just got diagnosed.
And
Tavia Vital (12:27):
because you needed that connection somehow,
Jessica (12:29):
you needed someone.
It's not like an easy.
Tavia Vital (12:31):
That when you were just like anybody that could be
within earshot trying to reach outand make a connection somewhere.
Jamie (12:37):
Yep.
Tavia Vital (12:38):
That makes sense.
Jessica (12:39):
And then the other thing that I did, which looking back
made it harder was I, I triedto launch back into normal life.
I tried to just pretend likewe could just jump back in.
We could sign up for those summercamps when she's four and a half
years old and everything could work.
I would just have to.
Be there somehow doing 12 shots andnot alcohol shots, insulin shots,
(13:01):
managing everything from the sidelines.
Yet my life would continueon as normal, you know?
And I think looking at,
Tavia Vital (13:08):
and you would keep doing all the things you did as a mom and
as a, as an adult along with all thediabetes things, and you can make it work.
Jessica (13:15):
Yeah.
I was totally, everything was gonna goback, literally like the next two weeks.
It was just, we got this, we can handlethis, we're gonna steamroll forward.
Obviously all those factors combinedis just a kind of a disaster.
Looking back, I don't
Jamie (13:29):
slap in the face
Jessica (13:31):
a disaster.
I really was.
But yeah, we made it through.
Tavia Vital (13:34):
What was it like early days for you, Jamie, you guys at home?
Jamie (13:38):
Well, at the time that Ellie was diagnosed, so this was just over four
years ago, so Ellie was diagnosed andI think it was three days later, my
husband was diagnosed with PTSD from work.
Um, he's a police officer.
Me not knowing what his triggerswere, what was going on with
him, what his therapy like.
He, he, he is an introvert himself,so he kept that all to himself.
(13:59):
So I felt like I didn'twanna put more on his plate.
So I just took over everything and,you know, don't worry about it.
I got it.
I got it.
And I could feel myself getting likemore and more wound up, like tighter.
Like I just, I, something wasgonna give, I'd cry in the
shower that way he couldn't see.
Yeah.
It, it was everything.
And of course, she's 21months old, so trying to eat.
(14:19):
What can we give her?
What is she going to eat?
How much do I bolus?
Did I give her enoughfood for the insulin?
Did I give her enoughinsulin for the food?
Like it was just all consuming.
So I ended up being able to take,I think it was 37 weeks off,
um, for critical illness leave.
Um, her pediatrician signed off because ofthe age that she was at, and just because
(14:42):
it is life changing, I mean, as muchas you wanna pretend that oh yeah, you
can still live with it and it's normal.
When it's brand new, there is nonormal, it is like walking on lava.
So, um.
Yeah, so I was able to take the37 weeks off and try and manage.
Yeah, here in Canada, cannabisis legal, so I actually did get
a prescription from my doctor.
(15:03):
Tried that to just kind ofrelax at night, you know, just
take some of the weight off.
Thankfully, I didn't, I become toodependent on it, like every three or
four days, you know, maybe step outside.
But yeah, it just, that wasn'tworking, so I just stopped that.
But yeah, so it was a long, long firstyear because between that and the therapy
that my husband was going through, theywere recommending that he get outta the
(15:26):
house for four hours at a time becausehe had to work his way back to being
able to work and be away from the house.
And I just felt like, okay,they don't understand.
How can they take my support away?
And here I am by myself.
Trying to keep my kid alive.
And I remember one time we did a sensorchange and it was just after supper
time and the sixes have a two hourwarmup window and she started to go low
(15:50):
and we didn't know what was going on.
And we're like, Ellie, wake up.
Wake up.
And she was starting to go unconsciousand like we're squeezing juice into
her and like doing whatever we can.
We called 9 1 1.
Our neighbors are allconcerned and we're like.
Yeah, she just had a low,like, you know, expect it more,
we're gonna be that neighbor.
Right?
So that was really scary inthe beginning just to be like,
(16:12):
oh, so this is our new normal.
And of course, and she's two years old, sotrying to get anything into her and she's
fighting and she wants to go to sleep.
And so yeah, that was, uh,really rough in the beginning.
And like you said, talking toanybody like diabetes just comes
up in conversation and mm-hmm.
My husband's family is all around us,but his sisters and stuff, they work
(16:33):
full-time jobs and they're husbands.
And my, at the time, my mother-in-law,step mother-in-law, she worked as well,
but she took the grandkids quite a bit.
While she wasn't comfortable withthe type one diabetes, and it's not
something you can push on somebody.
And so we were on our own littleisland and doing our own thing.
Tavia Vital (16:54):
My experience there is, it's different because the role
that I was in already, I alreadywas working as a diabetes educator.
It was already, around a group ofpeople that focused on people's
health who live with diabetes.
So I could go to work and I couldtell people what was going on
and they wouldn't be completelyoblivious to what I'm talking about.
(17:16):
And so I had a little built in work,um, support that, and my mom, who.
My parents raised me through thedark ages of type one diabetes.
Yeah.
So they, they don't understanddiabetes type one management now
because the insulins are different.
The technology didn't exist, you know,but they understand the spontaneity of
it and the things that you have to do.
(17:37):
To try to get a routine and thechallenges and the frustrations and
the imperfection and the, and theroyal mess ups where you give the wrong
kind of insulin or you totally forgetthe insulin at home and you're out
to eat or illnesses and what it does.
You know, they, they understood that.
And so I had some support built in.
Was was just hugely helpful and whenI started working at IDS I noted this
(18:01):
common theme that you guys are sharing.
Your experiences were totally differentwith the diagnosis story, right?
The way that you guys arrivedat the diagnosis is different.
The ages of your kids different,but you have this common thread
of, of that initial overwhelm.
It's just huge.
And the feeling that you can't get itright no matter what you do, and trying
(18:21):
to find connections and feeling isolated,it's just, it's a part of being a parent.
Diabetes or not, and then you throwdiabetes in there, type one diabetes,
and then it's sort of like, it's likeexponential the amount that you can feel.
You had no idea that you could feelthis many feelings all at once, right?
Jessica (18:38):
For us too.
Like Ellie, she was born with acondition called Danny Walker Syndrome.
So it's a spectrum.
And thankfully she's on the verymild end, so she has slightly
extra fluid on her brain.
So she was delayed withwalking and all that stuff too.
So trying to, you know, talkto other parents about your kid
and you're like, she's not thereyet because of the Danny Walker.
Oh.
And she has diabetes.
(18:58):
You know, I feel like I'm likethe one that has her kid in
bubble wrap and like, well she,you know, like, we can't do that.
We can't do that.
You know, so it was during Covid andtrying to relate to other people,
and it was just not successful.
Tavia Vital (19:10):
So what, what do you think, this was something I had asked
you guys to think about ahead of time.
If you could go back in time andtell yourself something to let you
know that it would be okay, what doyou think would've, or that someone
else could've told you or send you?
That might have been comforting.
Jamie (19:26):
I know for me, like joining all these groups for diabetes and stuff, and
you're seeing these people that are likethree and four years in and their kids are
older and they've got those straight linesand you're like, why can't I do that?
Like, you're striving so hardto, you know, get your kid to
that spot and they're like, yes,we're doing this, we can do it.
Or constantly checking the time and range.
Don't do that.
(19:46):
Like I think that's part ofwhat caused my anxiety, because
I was like so hung up on that.
Like, why can't I get this right?
Why are they a better parent than I'm?
What are they doing that I'm not?
And it was just so hard that way to justsit back and be like, that's not us.
Jessica (20:01):
I think for me, it would've been nice to hear you're gonna
learn how to play a poor hand.
Well.
You've been dealt a bad deck ofcards and what you're gonna learn
is how to play it well, and you'regonna need strength to do that.
And you're also gonna learn, it actuallyshows you what love really is, that I've
kind of seen that through the diagnosiswith, you know, the, obviously it's a
(20:22):
struggle in a marriage to go throughsuch a hard diagnosis with a child,
and yet you hopefully keep comingback to each other and it's not easy.
The help that you get, theconnections that you make, it
really does show you where love is.
In these kind of small places.
Even a grocery store, whenyou talk to the clerks
Tavia Vital (20:40):
like just the random acts of kindness and the, and the
occasionally when you reach out andyou get a good connection, even for a
minute, it's a really good perspective,but I never thought about it like that.
Jessica (20:49):
It would've been nice to hear like, don't worry, you're angry, but
it will subside the anger subside.
And you still won't have good sleep,but life does can start to feel
more normal after a couple years.
Jamie (21:02):
Yeah.
Yeah.
Tavia Vital (21:02):
And you can live many years without sleeping the whole night through
consecutively, and you'll still make it.
Right.
Wouldn't that be good to know?
Jessica (21:09):
Yeah.
Tavia Vital (21:10):
Sometimes it doesn't feel like it, but truly.
Jamie (21:12):
You may age a little quicker, but
Tavia Vital (21:15):
Right.
True enough.
Yeah.
Jamie (21:17):
I, I found, um, for us trying to sleep through the night, I actually
had her in our bed because I was soafraid I wasn't gonna hear the alarms.
Jessica (21:24):
Mm-hmm.
Jamie (21:26):
That was like my biggest thing.
Like, oh my God, am I gonna wakeup and she's gonna be unconscious.
Like, I was so paranoid about that.
In the beginning, thankfully shedid night feeds, so we would do like
the little sippy cups and she woulddrink the chocolate milk and we did
the fair life 'cause high protein,less sugar, like we did all that.
And then one day she just reachedthe age where she's like, Nope,
I'm not doing night feeds anymore.
So that we had to go tomini dosing glucagon.
Jessica (21:48):
Wow.
Jamie (21:49):
So like at any moment things can just change and you
have to learn to roll with them.
And it was just, have youuh, heard a sugar pixel?
Jessica (21:57):
I actually just got one to give to the school.
I'm a little delayed.
They have a Glo-cose,but um, there's another,
Jamie (22:02):
we have two sugar pixels and one is in our bedroom
and one is on our main floor.
The teacher that we had,she didn't want one.
Just outside of her comfortlevel, which I understand.
So next year she may have onein her classroom, but those
are the best things ever.
Tavia Vital (22:17):
Because then you can sleep.
Jamie (22:18):
Yes.
Tavia Vital (22:18):
You know that you're gonna get a alerted
and and you're gonna wake up.
Jamie (22:22):
And I have the alarm on the lowest setting and I can still
hear it through my whole house.
So I know I'm not sleepingthrough and my husband too.
There were a few times that he wason nights and I was sleeping, and of
course it had been a long day, I wasexhausted and I just didn't hear the
alarms on her pump or my phone or,and we had a few arguments about it.
And of course it scared me too becauseif I wasn't waking up to these alarms
(22:42):
and he's ha... not able to leave work,like thankfully he's a police officer,
so lights and sirens if he needed to.
Just to have that peace of mind forsomething to wake me up and know 'cause as
soon as it will go off, I'm like, I'm up.
So he wouldn't have to worry.
So he knows it's being handled and yeah.
Tavia Vital (22:57):
And I think it's important to know that as a
parent, it happens to everybody.
Jamie (23:00):
Yes.
Tavia Vital (23:01):
I mean, I'm sure there are some parents out there,
there's probably plenty of themthat never sleep through an alert.
Like they could just be up.
And I'm not one, I, I'm tired.
Right.
Tired at night because we'regetting, getting interrupted
sleep because of type one.
I mean, not all the time now, right.
But yeah.
But there are just times wheredoses need to be adjusted.
Their physical activity was different,the food was different, and we're
(23:22):
gonna get woken up at night.
And, um, between my son's alerts andmy alerts, I mean, I don't sleep right?
Sometimes.
Jamie (23:29):
Yeah.
Tavia Vital (23:29):
Sometimes we have a run and I'll have a whole week
and I'll be like, oh my gosh.
I didn't wake up for anybody'salerts except for the alarm clock.
It's amazing.
But totally you're gonnasleep through alerts and it's
terrifying when it happens.
The first couple of times lessterrifying for me because again,
I, I've had type one for 43 years.
I haven't died yet, and so chancesare pretty slim that something that
(23:52):
dramatic would happen and I wouldn'twake up if glucose was that low.
And same for my son.
He feels as low.
He's old enough and he has symptoms.
It's different for each person whetherthey get low glucose symptoms when
things are really low at night.
So it's good that youguys have some tools to.
When you, when you know like, okay,we've been sleeping through alarms,
we've tried all the differenttricks, like let's do this.
(24:14):
That's nice.
Jamie (24:14):
Yeah.
They're a lifesaver though.
Like literally.
Tavia Vital (24:18):
I'm gonna put ours back in my son's room because
he's a teenage boy and they canactually sleep through fire alarms.
Did, you know?
So he doesn't wake up for anything.
I have to go in and likephysically wake him up and be like.
Your sensor says you're low.
Are you low?
Jamie (24:31):
Ellie sleeps like the dead.
Like now with having themini dose glucagon, she'll
feel me pull down her pants.
'cause we always do it in thebutt and she'll be like, no mommy.
And she like kind of like putsup a small fight and then I give
her the shot and she rolls overand she goes right back to sleep.
Nothing happened.
So like, I guess that's a small blessing.
But I know the first few times, likethe finger pokes and the needles, when
(24:53):
she stopped crying, that was probablythe most heartbreaking because I'm
like, she's getting used to this.
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Tavia Vital (25:38):
I was just thinking about, you know, right now, you guys just
described how it was in the beginningand you're no longer in the beginning.
How do you feel when you think about yourchild's type one diabetes now overall?
Jessica (25:50):
I'd say about six months ago I went, I just kind
of took a turn and I was like.
That's enough.
How can I be a better role model and abetter caretaker kind of, I think it's
human nature, just naturally, hopefullywanna be better than we are or were.
And then, so that'swhen I stopped drinking.
I started cooking more meals on the table.
(26:11):
I can't say, I guess her numbers gotbetter, but it was more, I as a person
finally had the capacity to, I wouldn'tsay take better care of myself, but
just notice that I could be better.
And you stop trying to make senseof how it happened, why it happened.
The anger subsides every conversation.
When you see people, you're not tryingto like somehow configure diabetes in.
(26:34):
In fact, at this point Iactually make a point of trying
not to talk about diabetes.
So that's kind of where I'm at now.
Um, and then the control and perfectionthat you thought you had completely
now by the wayside and it kind of, it'salmost a relief knowing that we actually,
you are not fooling yourself anymore.
(26:55):
We're human.
We're battling this particular disease.
Other people are battling otherthings, but we're imperfect.
There's, there's nothing we cando about that except, you know,
keep trying as best as we can.
Tavia Vital (27:09):
Yeah, yeah,
Jessica (27:10):
yeah.
Kind of,
Jamie (27:10):
honestly, I call it the worst science experiment ever.
Never ends.
You never know fully how you'redoing with it, and it can
change at a moment's notice.
It's so what worked on the first dayisn't gonna work on the third day, and
it's gonna change again by the 10th day.
Jessica (27:27):
And then the sensor fails--again.
Tavia Vital (27:30):
Yeah.
Half a day of where you thought itwas working and then you realize like,
here's this new pattern emerging.
And it was really just the sensor.
Jamie (27:37):
That's it.
Or there's an occlusion or like,there's always something and it's like
you're trying to solve this mystery.
Well keep your kid aliveand make the best of it.
And like I, I definitely, so Iwas diagnosed with PTSD and severe
anxiety because of how young she was.
With everything going on withmy husband working at the
(27:58):
hospital, I've learned to just.
Kind of sit back more.
Tavia Vital (28:02):
Mm-hmm.
Jamie (28:02):
Instead of trying to control everything.
Tavia Vital (28:04):
Mm-hmm.
Jamie (28:05):
To just sit back and kind of go, okay, well that didn't work.
Let's try this.
Jessica (28:08):
Exactly.
Jamie (28:08):
Instead of being like, why isn't it working?
Jessica (28:10):
Yeah.
Tavia Vital (28:11):
That's really helpful.
Jessica (28:11):
I learned to, especially for her benefit too, is seeing it, and
I think I learned this from some ofthe group work that we did at IDS and
Tavia Vital (28:20):
Yay.
Jessica (28:21):
Seeing things more as data.
If a day is really bad, I used to beatmyself up, you know, it would just be,
I couldn't stand to see the numbers,but now it's like, okay, let's look
back at the day, what could have gonebetter and not calling the school all
the time to, you know, just kind of.
This happened today.
We're gonna try again tomorrow,and that's become a lot easier.
Tavia Vital (28:41):
Great.
Jamie (28:42):
We were, um, very fortunate with the daycare that we had,
so she was in a home daycare.
The girls, she decided that, well,they were moving where she was moving.
It didn't make sense for us tostill continue on and they wanted
to expand their family more.
So we then had to find a new daycare.
So we got turned down by numerous homedaycares because it's a liability.
They didn't want that.
(29:03):
We found a licensed daycare and theywent above and beyond like phenomenal.
And to this day, like a coupleof the girls still watch her, you
know, if we go out for something.
So like that has been just greatbecause they know, they understand.
But now that she's in school andstarting back at square one and having
to educate the nurse, the teacher,the principal, and we don't have
(29:27):
school nurses, we just have two.
And I'm not even sure if they're nursesor psw, personal support workers.
Um, but one goes in for thefirst nutrition break and one
goes in for the second one.
So all day long, I'm constantlylike, they're like, how much
do you want us to bolus?
This is how much she's got on board.
This is how many carbs she ate.
Oh, she changed her mind, liketrying to balance all that.
(29:49):
Then she's in an afterschool programon top of it, and so there's another
person to contact all day long.
Um, I'd love to say that, you know, wejust roll with it and let it happen.
But you know, we've had asituation a couple times with the
afterschool program where they'veover bolused quite significantly.
My husband or I are leaving work, orhe's off, but has some stuff to do so
(30:12):
he put her in the afterschool program.
He's had to go pick herup and it's uh, yeah.
As much as you wanna be like,yeah, we've just learned to
roll with it as best as we can.
It's still like you're on your toes.
There's no shutting it off.
Tavia Vital (30:23):
That's true.
That's true.
How old is Grace now?
Jessica (30:25):
Grace is almost eight.
She'll be eight this summer.
Yeah.
Tavia Vital (30:29):
And Ellie six now.
Jamie (30:31):
Yeah.
Just turned six on Friday.
Tavia Vital (30:33):
That's funny how time passes.
Jessica (30:34):
I'm trying more now as she's, she is starting to
become a little more independent.
She catches her lows.
She has a little candy bagthat we did have to go through.
She was sneaking thecandy for a little bit.
But you go through these trial and errorsand you have to keep trying and you have
to say, okay, we're gonna try again.
And you know, you'renot supposed to do that.
But just making sure to, likethis morning after her fifth
sensor change in the last day.
(30:57):
Two days just saying, grace, you'vebeen incredible the last two days.
You just making sure sheknows I'm acknowledging how
hard this must be for her.
And it's, it's hard for me to,but like she's the one who has
this burden the rest of her life.
Yeah.
Uh, and i's good, feel like as she'sgetting older, that's really helpful.
Uh, especially on the harder daysand telling her, you might be a
(31:18):
little tired today because I hadto roll you over a lot last night.
You were on your sensor.
Just, you know, give your, cut yourself alittle bit of a break if you feel tired.
Tavia Vital (31:26):
That's nice.
Jamie (31:27):
Yeah, we do that with Ellie too.
You know, like, she'd be like,I, I don't like my diabetes.
And we try to explain it to her too,like, she's got kids with autism and
her class and her school and stuff, andwe'll be like, they're different like
you, only their brain works differently,whereas your pancreas works differently.
You know, like ev, nobody's perfect.
Nobody's a hundred percent.
(31:47):
You know, we all have theselittle quirks about us, and you
know, you do the best you can.
And, but yeah, she, I try not to lether, see me get frustrated about things.
It's really hard when yousee them trending down and
you're like, drink your juice.
Drink your juice.
Okay, can you drink your juice please?
So it's like, okay, we've got candy.
What do you want?
Like, trying to encourage her.
(32:08):
But we've always said to her like, shecan have whatever she wants food wise.
Just let us know so we can bolus you.
That way she doesn't feel like she'snot getting things other kids are.
Like even at school, if somebody bringsin cupcakes, yep, she can have one.
You know, we'll do what we can.
Or, you know, her numbers arethis, give her this insulin.
(32:28):
But we've always tried to make surethat she's like the rest of the
kids with food and everything else.
Jessica (32:34):
Have you guys heard of that poem, Welcome to Holland by Emily Kingsley?
It basically talks about a parent.
A child with a disability and how you,you think you're going to Italy and
you're so excited and you got all the tourbooks and you got on the plane, but then
the plane lands and you're in Holland.
And you're angry and youdidn't wanna be in Holland.
(32:54):
And then as you can imagine, it goes intothe details of you now have to open your
mind up and let go of the fact that you'renot in Italy in order to enjoy Holland.
And I just, that was actuallyextremely helpful for me.
I read that poem, I rereadit, and it helped me kind of
move forward into Holland.
Tavia Vital (33:15):
That's amazing.
Jessica (33:15):
I guess you could say.
Jamie (33:16):
Yeah.
Instead of like even being a momand this is what you expected it
to be like, but this is what it is.
Mm-hmm.
You know, you have to accept itand move forward or I, I call
it kinda like a pity party.
Yeah.
You can stop and enjoy the party oryou can get stuck there and that's it.
Jessica (33:33):
It's very painful to realize that you, one had dreams for your child.
You don't realize until the dreamsare completely different, right?
It's painful to realize that it's never,it's not gonna be how you pictured and you
don't even realize that you were actuallypicturing things a certain way until
you can no longer picture them that way.
And that was initial, but now I'm kindof moving past that, which feels good.
(33:55):
There's still pain there, but
Tavia Vital (33:58):
yeah, for sure.
Jamie (34:00):
I always imagine like Christmas time and stuff, and the baking and
you know, and then I attempted it onetime and she's trying to shove things
in her mouth and I'm like, I haveno idea how many carbs are in that.
Like, stop, stop.
Like all of a sudden my like bloodpressure's through the roof and I'm
like, okay, this wasn't a good idea.
So now we do the like.
Pre-bought frozen stuff.
'cause I'm like, eh, if she eatsthat, I can kind of still carb count.
(34:21):
But you know, like all of a sudden she'sdumping half the flour on the table
and half in the bowl and then licking.
And I'm like, I don'tknow what you're doing.
Jessica (34:29):
Sometimes I watch those moments and I just wonder what it would be
like to be able to enjoy it, you know?
And I, that makes me sad still sometimes.
Jamie (34:38):
Yeah.
Yeah.
And unfortunately it'sthe new normal, but.
Jessica (34:43):
Then you say, oh, well moving on onto the next.
Tavia Vital (34:45):
Yeah, that was a moment that just closed now.
Okay.
Let's see what else is going on present.
And my son is getting to, you know,he is one year left in high school and
thinking about going to college and I'mhoping that he picks a college nearby
so that he could still live at home.
Which, at least for anothercouple, he's young for his
age as far as developmentally.
(35:06):
You know, like some kids that ageare out like in leadership councils
and they work a job and they dosports and they do their schoolwork
and they, but that's not my son.
My son is.
He does have, uh, he has ADHD and hehas sort of slower processing speed,
some frontal lobe slowness, let'ssay executive functioning slowness.
And so he, you know, the idea of himgoing out to college and then with
(35:30):
type one diabetes where he doesn'twake up for his alarms and I'm
like, we have to figure this out.
We only have a year left before.
I don't wanna be the one that puts my footdown to say, you're not gonna be safe.
Jamie (35:39):
Yeah,
Tavia Vital (35:39):
So you can't.
So we have to figure out a way to makeit, make it so he can be his best self
and support that, but also keep them safe.
Jamie (35:48):
So I've already looked up drinking and everything else and
just so that way I can be prepared.
Or like the Juice Box podcast, likethe after dark episodes and like
Tavia Vital (35:58):
yeah, good.
Jamie (35:58):
'cause I don't wanna be caught off guard.
And thankfully my husband has a coworkerand she has type one, so I can kind of be
like, Hey, what happens when you do this?
Or my cousins also type one and be like,so when you were this age, how like.
You know, to kind of get ahead of it,
Tavia Vital (36:14):
you could ask me too, but not well... I'll tell you some
safety things and some experientialthings that I learned from and
learned as a diabetes educator later.
Jessica (36:22):
That actually has been probably the most helpful for me is at IDS working
with you guys who have been throughdiabetes for the last 15, 20, 30 years.
I think is more helpful hearing yourperspectives than fellow caretakers
who are just kind of like scramblinglike myself because it kind of, I see
(36:42):
the light at the end of the tunnel andI can get better perspective that way.
Tavia Vital (36:46):
That's us.
Part of why we do it, because you know,we have to have the stinking thing.
We might as well be able to use that tohelp other people not struggle as much as
some of us struggled on the way through.
It's a benefit that we can giveand we love giving it, so, yeah.
Jamie (37:04):
Yeah.
Thank you.
Yeah, it's, it's like our teamthat we have here in Canada, our
doctor's office and their nurse andeverything else, and they recommend
changes and stuff, but every timethey recommend a change, I'm like, I.
Tavia, this is what they mentioned.
What do you think?
Like just because you live it.
So like they have office hours of this tothis and on weekends if something happens
(37:24):
you can't get ahold of anybody, right?
Whereas I can send you an email realquick and or in a text being like,
check your email and you know, getan answer back usually same day.
And you know, it's peace of mind.
Tavia Vital (37:37):
Yeah.
Yeah.
We have a great thing going.
Yes, we do.
I love, I love my team and Ilove my job and I love working.
It's been fun for me towork with families too.
I have a special bond with parents,though being a parent of a kid with
type one diabetes, that that's beenpart about my job that I really
enjoy getting the opportunityand the time out for caregivers
(37:57):
groups that we started a while ago.
It was another good opportunityto be able to interact with
people going through the muck.
Jessica (38:04):
In that group.
I feel like all I did wascry on that in those groups.
I feel bad for the people that
Tavia Vital (38:11):
that's what happens to everybody.
I mean, not everybody, but like at leastone, if not two or three people, if when
we have a good group size, like it's justa, it's a place where you can breathe.
Jamie (38:21):
Yeah.
You know, and, and be heard.
Tavia Vital (38:22):
And you know that nobody on there would be like, what
does the matter with her type oneis not that hard, for your kid.
You know.
Jamie (38:29):
I have a, a neighbor actually, and she has a little guy who's type one.
And next year our twowill be in the same class.
Like we've actually asked for them tobe in the same class so they can kind
of, you know, learn from each other.
Mm-hmm.
And there's nights, youknow, here's another low, or,
hey, do you have any Zofran?
Or, you know, like.
I literally can see herbackyard from my front porch.
(38:50):
So like it's nice to have that so close.
So Fran, yeah, sorry to have that likeso close and about the only person that
we have watch Ellie on a regular basis.
And actually like if somethinghappens to my husband or I, that's
her guardian is my cousin, who'ssister is the one with type one.
She's experienced with it.
She has that resources to her to help out.
(39:13):
You know, 'cause likethat was another thing.
Should anything happen to us,nobody knows how to handle it.
What did we do?
Jessica (39:19):
I think that was hard for me and still is, is how relationships
have changed after the diagnosis.
Based on how or lack of involvement,lack of interest, lack of just
general knowledge, understanding.
You just can't leave, I can'tleave her with even my own parents.
And so it's, that's, I haven'treconciled that in my mind yet.
(39:40):
I don't know if I ever will.
It's, I guess you accept it,which I have, but it's, doesn't
make it easier or less sad.
Jamie (39:47):
No, I 100% can relate to that.
Like my family is at least an hour away.
Mm-hmm.
Some of them are more like threehours away, so, and I lost my mom.
10, 11 years ago now, and she was a nurse,so she would've been like so hands on.
Mm-hmm.
And to not have that.
Tavia Vital (40:07):
Yeah.
Yeah.
So that's another piece tothe puzzle too, is the ongoing
relationships and figuring those out.
Which ones can use, still build onfor understanding your child's type
one and keeping them safe so that.
They can spend time in other people'shouses and you can take some downtime
for you to go do some things.
That's always a challenge for sure.
Jessica (40:28):
and it is getting easier as she gets older and can
catch her lows for, for sure.
And she make things easier, you know,just being able to use the phone
to dose versus shots like every,
Jamie (40:38):
yeah.
Ellie still doesn't feel.
Highs or lows.
And so, and we're actuallyhaving our first friends party.
Yeah.
And all the parents arelike, do you mind if I come?
And I'm like, of course.
Like, 'cause I don't wanna be that parentthat's like, oh, we don't want you there.
And then all of a sudden liketheir kid has a party and be
like, do you mind if I come?
'cause she's got type one.
Like I found, like that's been so hardto just let her be a kid in that sense.
(41:01):
But without being that mom that'slike, so I'm just gonna sit in
your driveway while she parties.
Tavia Vital (41:05):
That's a joke, by the way, because, oh, I think most all moms of
kids with type, especially young kids,with type one, we're always nearby.
Like you're going to this big event forthe school at the, you know, in the next
city, I guess I have some errands to run.
I'll just be in the parkinglot and I'll do those errands
while you're eating lunch.
Jamie (41:21):
We volunteer to chaperone.
Like we, we volunteer to be an extra hand.
Like my husband and I actuallywith our work schedules, I am
off days that he works, so thatway one of us is always available
should something happen at school.
My workplace, and I've kind of buttedheads a little bit on that, trying to get
them to understand and everything else.
But, uh, it's worked upfor the best for her.
(41:43):
But come summertime, like again, it'sgonna be another challenge because
we can't send her off to day campsbecause most of them in this area are
run by teenagers who aren't legallyresponsible and there's no nurse on staff.
So it's like, how do you do this andbe a productive member of society
(42:04):
and make sure your kid's safe?
And it's, that's a struggle.
Jessica (42:09):
I have gotten better at asking people who seem maybe willing to take
it on, and I am actually surprised.
There's been two, maybe three, likea friend's play date or a birthday
party, which was at a doctor's house.
So it was a doctor, butthey did a good job.
It feels good when that happens forthe first time because you start to
see, okay, there's possibility here.
(42:31):
There is freedom on the horizon.
It's just, it's gonna be theselittle one-offs for a while until.
She can do more herself.
Jamie (42:40):
Yeah.
Tavia Vital (42:41):
What about anything that you want to relay to other, say, newly
diagnosed families or anybody who'sbeen sort of rolling through it all
over a few years now, kind of in the,in the situation you guys are both
in anything you wanna leave 'em with?
Jamie (42:56):
It does get better.
This is your new normal,but it does get better.
What seems like such a big deal in thebeginning as you learn to handle it.
It's almost like your firstsickness with a child.
Like a cold, or you're like,oh my God, what do I do?
You know, and like, are they okay?
Are they in pain?
And then the next illness, you'relike, okay, well this worked last time.
Let's try this.
You know?
Like it gets better once youget more comfortable with it.
Jessica (43:19):
Yeah, and more knowledge.
I feel like now I can, I can diagnosethings so quickly with all the information
that I've absorbed the last two yearsor, and I know how to look things up
and where to find information and who tocontact, that it's not stressful anymore.
It's just a job.
It's more, yes, more.
It's a job that you do and thenit's done and then you have more
job and it's kind of a sporadic job.
(43:41):
Kind of a bit unpredictable withno monetary reward, but people
always tell you, oh, it gets easier.
Like when you have babies andthey're like, oh, when you get older.
I never liked hearing that.
It does, but it really does.
It gets more, you just get better.
That's what happens.
Tavia Vital (43:56):
Yes.
So the diabetes doesn't get really easier.
It changes all the time.
There are always curve balls coming at us.
Jessica (44:05):
You're gonna be forced to get better.
You're forced to get better.
Tavia Vital (44:08):
Right?
You get tougher, you get more.
You get skills under your beltand you get more confidence
with what needs to be done.
And the acceptance of it doesn't need tobe perfect 'cause there is no perfect.
Mm-hmm.
Jamie (44:20):
I have to say, our last trip to emerge here, one of our nurses
was type one and the doctor that wason said to us because she saw that
we're four years in, what do you need?
Not, well, we're gonna try this and this.
It was, what do you need?
Yeah.
Because she knew that we'd been doingthis so long, we probably had a better
idea than she did, and like that was socomforting and we're like, let's try.
(44:41):
Zofran and then let's try an iv.
And you know, like, right, you got it.
Tavia Vital (44:46):
This is what we know she needs.
Jessica (44:48):
You've got it.
Yeah.
Yeah.
Jamie (44:49):
So it was,
Tavia Vital (44:49):
I think that's important because I think in the very beginning,
you just don't have, you can't have that.
You can't, you have to gothrough all of the mm-hmm.
Emotions and the knowledge thatyou need and the practice edit
and the skill building and therepetition to get where you are.
So I think that's really, that'sa good place to conclude for us
today, is just to let people know.
That it, it will get betterthan in the beginning.
(45:12):
In that you will, you'll makeit through and we'll figure out
what needs to be done, especiallyfor young children, right.
Jamie (45:21):
In the beginning, it's a scratched, foggy crystal ball.
It's a little clear.
That's the years go by.
Jessica (45:27):
Very tired.
Yeah.
Tavia Vital (45:29):
Today's session was really, it was really nice time to reflect back on
what things were like for Jess and Jamie,and even for myself when our kids were
first diagnosed with Type one diabetes.
What it felt like early days and thethings we struggled with, and that common
thread of just that overwhelm and anxietyand the anger, and we talked about how
(45:53):
coming through that was it a huge process.
It's life altering.
It's not easy.
We're all still tired all the time.
That doesn't go away, but that we findways over time to get connections made
and find what our kids really need to,to be healthy even though they have
type one diabetes and that we're alltrying our hardest to keep improving
(46:15):
what we can do as parents, and thatit is beneficial for all of us to work
with other people who we can relate to.
Intermittently, whether it's online or ifit's in a visit or it's in a group where
you can work with other parents who areworking on letting go of trying to over
control everything or handling emotions,learning how to process emotions.
(46:37):
Those are all helpful things thatwe've sort of waded through over a few
years time, and we're hoping that thisinformation will be beneficial to other
parents out there, whether it's a newdiagnosis in your family or you've been
wading through all this, I call it themuck, all the, the yucky stuff, the stress
and the imperfections, and the feelinglike a failure as a parent when things
(47:00):
don't go as desired, especially with typeone diabetes management for your kid.
Um, and just know that you'll,you will make it through, come
what may, good, bad, or ugly.
And that you can have find supportsometimes in surprising ways.
We hope that the information thatwe talked about today is beneficial,
and if anyone has questions aboutwhat services we offer for support at
(47:23):
Integrated Diabetes Services, or ifyou have questions about how to set up
a visit with one of our clinicians whoalso live with Type one diabetes like
myself or any of our other, my otherteammates, just reach out and let me know.
Gary Scheiner (47:34):
Thanks for tuning in to Think Like a Pancreas-The Podcast.
If you enjoy today's episode, don'tforget to like, follow or subscribe
on your favorite podcast app.
Think like a Pancreas-- the podcast isbrought to you by Integrated Diabetes
Services where experience meets expertise,passion meets compassion, and diabetes
(47:55):
care is personal because we live it too.
Our team of clinicians, allliving with type one diabetes,
understand the challenges firsthand.
We're here to help no matterwhere you are in the world.
The glucose management, the self-carestrategies, the latest tech, sports,
and exercise, weight loss type one,pregnancy and emotional wellbeing.
(48:17):
We've got you covered.
We offer consultations inEnglish and Spanish via phone,
video, chat, email and text.
Wanna learn more?
Visit integrateddiabetes.com oremail info@integrateddiabetes.com.
To schedule a consultation on behalfof Think Like a Pancreas, the podcast.
I'm Gary Scheiner, wishingyou a fantastic week ahead.
(48:40):
Don't forget to think like a pancreas.
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