December 7, 2023 • 28 mins
Today, we gather around the digital campfire to share the enchanting and hard-hitting story of Wilodene, a tenacious woman who lived with seizures for decades before her genetic heart condition, Long Q-T Syndrome, was discovered. Inviting us through the pages of this striking tale is her daughter, Jackie Renfrow, who returns to brighten our podcast with her stories of hope, resilience, and advocacy. As a special memory, Jackie and her mother appeared on our podcast together, their shared hope being that their story could potentially save someone else’s life.
The journey didn't end with just Wilodene. Jackie's narrative continues as she traces the impact of Long Q-T Syndrome on her family over the course of seven decades. She recounts the measures she had to implement to protect her loved ones from potentially fatal seizures. Jackie's story is punctuated with moments of fear, especially for her grandchildren and great-grandson, but she meets these challenges head-on, embodying the courage and resilience that her mother passed down to her.
As we traverse this journey with Jackie, we're given an intimate glimpse into her efforts to comfort her mother in the face of death, while also securing professional help and community support. Jackie’s plans for advocacy work in raising awareness about Long Q-T Syndrome form the cornerstone of our conversation, showcasing her commitment to continue her mother's legacy. Join us for this heartwarming tribute to a woman who defied her condition to live a full life and to a daughter who continues the fight with hope, resilience, and advocacy.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jackie Renfrow (00:00):
Her greatest achievement is to live to 94
(00:03):
years old and to have children.
Thankfully, she'd never had tobury a child. But when she
buried my children, I will saythat was about as close to
children because she had a verygood, nice bond with my
children. They were very closeto grandma.
Michael Liben (00:26):
What can we do to celebrate the lives of those we
love after they've passed away?
To what does one daughterattribute her mother's long
life? How can we celebrate ourmothers when they're no longer
with us? Welcome friends to"Bereaved But Still Me". Our
purpose is to empower members ofour community. I'm Michael
Liben, and the father of threechildren - Idan, Sapir, and
Liel. Liel, my youngest daughterwas born with a heart defect and
(00:47):
later developed autism and thenepilepsy. Losing her at 15 is
what has brought me here to bethe host of this program. Here
with us today is our guestJackie Renfrow. Jackie's family
was treated for epilepsy foryears. On April 15, 2000, she
received a call saying that herson Jimmy had died from having a
seizure in his sleep. He leftbehind a wife and a daughter.
(01:08):
Just two years after that. Herdaughter, Crissy died the same
way on July 25, 2002, leavingbehind an eight month old baby.
Ten months later, Jackie'smother Wilodene, was rushed to
the hospital for a heartcondition called long QT
syndrome. Having suffered fromseizures for many years,
Wilodene was very fearful of herown death, and many times found
(01:29):
herself very close to thatdeath. Sadly, it wasn't until
2003 that the family finallydiscovered that the many family
members who died had not diedfrom seizures, but rather from a
genetic heart condition. Long QTsyndrome is a specific
arrhythmia that can be lethal ifnot addressed properly. It may
appear as a person with long QTsyndrome is having a seizure.
But actually the heart'selectrical system is not
(01:50):
functioning properly. Wilodean'sdoctors discovered she had long
QT syndrome, and they put aninternal defibrillator into her
chest to help her heart when itexperienced arrhythmias. The
defibrillator allowed Wilodeneto live into her 90s. Together
with her daughter Jackie, sheappeared on our podcast twice,
once to talk about losing lovedones to a misdiagnosis and then
again to talk about living withloss after loss. The links to
(02:11):
these episodes will be in ourshow notes. Sadly, Wilodene
passed in 2023. Today, Jackie ishere with us again, and we have
a wonderful opportunity tocelebrate her mother's life in
this world. Jackie, thank you somuch for joining us again
"Bereaved But Still Me".
Jackie Renfrow (02:27):
It's my pleasure, Michael, thank you for
having me again.
Michael Liben (02:30):
I just want to express our collective sorrow
when we heard about Wilodenerecently, and the chance for us
to say publicly how much wesupport you and how we feel for
what you went through.
Jackie Renfrow (02:42):
Well, thank you so much.
Michael Liben (02:44):
When you and your mother were on the first time,
what did that mean to her to beon the podcast?
Jackie Renfrow (02:48):
It meant the world to my mom because she
truly loved to share our story.
And reach out to people in hopesthat she would help someone
since she had lost both of hergrandchildren to long QT. She
was hoping to save otherpeople's lives since we had no
clue what had taken Jimmy andCrissy's lives. And she just
(03:09):
loved telling the story. So itmeant a lot to mom, and it meant
a lot to me, because now Ialways have a piece of her voice
out there. I can grab and listento.
Michael Liben (03:22):
I'm glad I was able to help be part of that.
And all of us here at theprogram are very, I'd like to
say happy but we're not. But I'dlike to say that we're all very
pleased that we could give thatto you. I don't think at the
time we realized that's what wewere doing. But in retrospect,
it is really a wonderful giftthat I think a lot of people
wish they could have.
Jackie Renfrow (03:43):
Yes. And I'm very thankful that I do have
that, just to hear her voice. Iwas trying to listen to it the
other night. Of course, it'sstill a little too soon, we're
only two months out, but I haveit saved on my phone so anytime
I want to listen to it, I cansure do that.
Michael Liben (03:57):
You know, when we met seven years ago, we had so
much to talk about, we realizedthat we have to record two
programs, because we weretalking about living with a
misdiagnosis which is in itselfa very serious issue. And I want
to get into that a little bitlater. But also loss after loss.
Your whole family was struck bythis it's apparently genetic. So
(04:18):
let's tell our listeners how thediagnosis was finally made, and
how that changed your family'slife.
Jackie Renfrow (04:24):
I lost my son 2000. I received a phone call he
was gone. And then just twoyears later on, while my
daughter was getting ready tohave a baby and I was very
fearful that something was goingto happen to her like it did her
brother and unfortunately it didon July the 25th 20 - or 2002.
My daughter had been goneapproximately 10 months when I
(04:48):
received a phone call that mymom had been rushed to a
hospital and was in intensivecare for her heart, which she
was 72 and I was thinking okay,well have, you know, she
probably has some type of maybehaving a heart attack or
something. And that's when thedoctor took us into a room to
tell us our mom had a heartarrhythmia called long QT
(05:11):
syndrome, and most commonlycould affect younger people, and
even cause death in them. Andthat's when I looked up to the
doctor and made eye contact withhim and told him I had just lost
my children, and I had no cluewhy I had lost my children. He
looks at me and says youprobably have long QT. They took
(05:33):
me and my sister and did the EKGand our EKG course looked weird.
So then we started undergoingthe proper test. And we did have
long QT syndrome. And me and mysister actually, both received a
heart defibrillator about amonth later. And we even shared
our rooms together.
Michael Liben (05:53):
What grabs me here, though, is that Wilodene
had seen people dying all aroundher for 70 plus years, and they
didn't know what it was, Iguess, because technology hadn't
come around to figuring thatout. But but suddenly they did.
So did it all come into focusfor her and did it change her in
a way that now she had somethingspecific to talk about and to
(06:14):
warn people about and, andsomething to work for something
to be involved with.
Jackie Renfrow (06:18):
I can't even explain to you after so many
years, it was just like, all ofa sudden this jigsaw puzzle was
coming together. And then thepiece just went right in there
and it explained everything fromwhy we had to cover the phones
when mom was sleeping to keepher from having a seizure
because we had every symptom outthere. But no one had just come
(06:41):
across it or even checked ourheart.
Michael Liben (06:45):
Why did you have to cover the phone? I'm curious,
how did that help prevent theseizure?
Jackie Renfrow (06:48):
When you're in a sound sleep with type two, type
two is very dangerous, beingstartled. And if you're
startled, it can cause yourheart to go into an arrhythmia,
and it stops pumping blood whichcuts off the oxygen to your
brain and causes a seizure.
Michael Liben (07:05):
Oh my gosh...
Jackie Renfrow (07:08):
Well, my grandkids once I found out the
diagnosis, I would tell theschools to pull them when there
was a fire drill. So it wouldn'tstartle them.
Michael Liben (07:18):
Oh, boy. I can't even imagine what that's like if
I were afraid of being startled,I think turning on a light would
startle me.
Jackie Renfrow (07:24):
It does. It really does. I'm scared of the
dark because of that.
Michael Liben (07:28):
I want to try to understand what it's like to be
in that family to be a part ofthat. It's really hard because
everything is wrong. Nothing isgood. How do you spend your day
like that?
Jackie Renfrow (07:40):
I don't think about it too much for myself. I
think about it for mygrandchildren. I live in fear
for them. But as for myself, Ijust try to live my life as
normal as I can. And hopenothing happens. And I have my
defibrillator in the event thatdoes and it will save me. I
worry more about my greatgrandson, something happening to
(08:01):
him because he's only he's justa year and a half old.
Michael Liben (08:04):
Does he have long QT?
Jackie Renfrow (08:06):
Yes, he does.
Unfortunately.
Anna Jaworski (08:10):
You're listening to "Bereaved But Still Me". If
you have a question or commentthat you would like addressed on
our program, please send anemail to Michael Liben at
michael@bereavedbutstillme.com.
That'smichael@bereavedbutstillme.com
This content is not intended tobe a substitute for professional
medical advice, diagnosis, ortreatment. The opinions
(08:34):
expressed in a podcast are notthose of Hearts Unite the Globe,
but of the hosts and guests andare intended to spark discussion
about issues pertaining tocongenital heart disease or
bereavement.
Michael Liben (08:48):
Jackie with everything that your mother was
carrying, you know that shelived into her 90s which is
pretty good. Now, you know, I'mabout to bite myself on the lip
for saying that because I'vealways said that we don't
congratulate people for beingolder or whatever we think is
older and I say well, that'sokay. Because it's never okay.
And your mother is still yourmother even if she lives to be
(09:08):
1000. But 93 is still prettygood. So what do you attribute
her longevity? Was it herfamily? Was there something in
her spirit that just refused togive up? So something that you
all did together? How did howdid that happen?
Jackie Renfrow (09:22):
You know, I, her mom lived to be 93. Actually mom
lived to be 94 which I was veryfearful when she did turn 93
that that would be the yearbecause she seemed to take after
her mom quite a bit. But thatlast year, I just started to
seeing the big decline in mombut she had a strong will to
live she was afraid to die. I'mnot gonna lie, she was very
(09:46):
fearful of death and I do blamea lot of that on our heart
condition on her having thosehorrible seizures for years. And
I think it scared her so bad isone of the reasons she was just
scared of the actual passing andwhat it would be like for. I do
think a lot of it is because ofthe long QT actually.
Michael Liben (10:09):
So you're saying that part of her longevity was a
fear of dying. She just refusedto die because she was afraid to
go there.
Jackie Renfrow (10:15):
I agree. Yeah.
And she had very good caretaker.
I have to give myself credit forthat. But yeah, she was very
afraid of that. And I'm going totell you about mom, she took her
medication right on time, shemight have forgot what she ate
for lunch but by gosh, sheremembered that medication.
Michael Liben (10:32):
Well, that's good, because I can't remember
what I had for breakfast, or Ican't remember my medication
some days. And the worst. Theworst is, you've taken it. The
box in front of you is empty.
And you go, did I take that now?
Or was it this morning?
Jackie Renfrow (10:46):
I just have to go over that with her quite
often. I would say that to hershe would say, "I've taken my
medicine". I said what did youjust eat? She goes, "I have no
clue but did I take mymedicine?"
Michael Liben (10:57):
We've all been so do with age, by the way. You're
right. That's just flat outfear.
Jackie Renfrow (11:05):
Yes. But she was also fearful she didn't take her
medicine that it would,consequences will be a seizure.
Michael Liben (11:12):
I know that so well. I know that oh, so well.
What would you say though? Wouldyou say that she had? No let's
let's put a more positive spinon it rather than just the fear
of death. Did she have some kindof joy of living which she did
she live for her family? Didshe? Was she a family kind of
person did you all come over fordinner? A little bit of that,
let's, we want to celebrate her,we want to talk about some
really happy moments.
Jackie Renfrow (11:33):
Well, mom loved her family. She did. She just
wanted to live. She reallywanted to live to play. She
loved to play cards. She lovedto read books. And she loved to
tell her story about what shehad been through. And that gave
her a sense of fulfillment. Shedid love her grandkids and her
great grandkids. And actuallyshe had great, great grandkids.
Michael Liben (11:56):
Good on her. I had a neighbor who had over 60
grandchildren and greatgrandchildren. And she died just
before number 60 arrived. Andshe knew everyone by their name.
She couldn't tell you maybe whatshe had for breakfast, but she
knew every kid by name and byorder. There's something special
about that, I think.
Jackie Renfrow (12:17):
And what was her age?
Michael Liben (12:18):
She was 93 when she died.
Jackie Renfrow (12:20):
Wow. That's unbelievable.
Michael Liben (12:22):
I'm going to digress for a moment. Well, she
lived upstairs for me and herdaughter occasionally would
spend days and nights with her.
And it was clear to the daughterthat it was time for her to go.
But she was waiting. She wasrefusing to go and she was
suffering. She wanted to seenumber 60 which was due any day.
And her daughter who is a nursesaid to her, she said, "Mommy,
(12:42):
you'll see him first". And withthat, she left.
Jackie Renfrow (12:48):
Oh, that's so sweet.
Michael Liben (12:51):
Yeah, there's something about being 90 plus
that makes you very sweet. Butbut yeah -
Jackie Renfrow (12:59):
I agree.
Michael Liben (13:01):
They're both wonderful people. And the woman
who was 93, who lived upstairsfrom me was a surrogate
grandmother to my children. Shewould take in sewing, I think at
least up to age 90, she wouldtake in sewing. And she would
never charge my kids foranything. She said I don't
charge children. So anything Ibrought her that was for my kids
was free. She was just the kindof person. She wasn't really
(13:21):
doing it to make money she wasjust doing to keep her hands
busy, you know, but it was athing, it was a thing. I get the
feeling Wilodene was that kindof a grandmotherly figure to
people who just needed agrandmother?
Jackie Renfrow (13:33):
By great yeah, she was very well and example
was my friend. Her daughter inlaw was passing away from
cancer. And she had two youngchildren and mom, of course
wanted to reach out and, anddonate a little bit of money to
help them out. So yes, that'sthe kind of person she is or
was.
Michael Liben (13:54):
What would you say is her greatest achievement
out of all the things that she'sdone?
Jackie Renfrow (13:58):
Her greatest achievement is to live to 94
years old, and good to havechildren. Thankfully, she'd
never had to bury a child. Butwhen she buried my children, I
would say that was about asclose to children because she
had a very good, nice bond withmy children. They were very
close to grandma. And I thinkone of her big achievements also
(14:21):
is I would like to I think I'dbrought this up to you before
but years ago, my mom had gotthe job at a hospital in the
state of Indiana, and shecouldn't type so they moved her
to the snack bar and then shewent on and received her degree
to be a QMA where she wasactually handing out meds to
(14:42):
patients and that was a hugeaccomplishment for her.
Especially at the age of 55.
Michael Liben (14:49):
And that was before she knew about long QT
right? So -
Jackie Renfrow (14:52):
Yes, yes. And she went on and got a couple of
degrees and was passing out medsto the patients.
Michael Liben (15:00):
That's terrific.
I didn't realize she haddegrees. And nonetheless, she
went and got a higher educationat age 50. That's terrific.
Jackie Renfrow (15:09):
It is. And so despite everything that, yeah,
because she had four kids sheneeded to get raised. And she
didn't really have a skill inany particular thing. So she
ended up in the snack bar andthen went on and got that skill
trade. I think that's amazing.
Michael Liben (15:27):
That's terrific.
Hats off. I want to ask you onemore question here before we
take a break. If you had to sumup your mother's life in just
one sentence, what would it be?
And I'm a nice guy. So I'll giveyou three or four sentences.
Jackie Renfrow (15:38):
I hope so. How would I say mom lived life?
Fast and furious. I mean, my momwas very honest and direct, but
could be kind when she wanted tobe if you weren't deserving of
kindness. If you weren'tdeserving, she would tell you.
Michael Liben (15:57):
Well, then let me just say how lucky I feel
because I spoke to her threetimes those years ago, each for
oh, I don't know, more than anhour. And I never got the
impression from her that shedidn't think I was worthy. And I
appreciate it.
Jackie Renfrow (16:11):
Now, because you wouldn't have gotten that
impression if she thought youwas you would have known. It's
probably the on her face. Shewas a very good person.
Michael Liben (16:24):
Well, I didn't see her face. I'll take your
word for it. But you were there,you would know.
Jackie Renfrow (16:28):
Oh, yes. Boy, do I know that look.
Michael Liben (16:33):
So she didn't suffer fools lightly. But what
else can we say about her? Yougot another half a minute.
Jackie Renfrow (16:37):
She did not mince words. No, not at all.
Unfortunately, that gene couldhave been passed on.
Michael Liben (16:52):
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(17:15):
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much more.
Jackie, we know that your motherlived her life in fear after
(17:36):
seeing so many people around herdie over the years. What did you
do to help her try to cope withthat?
Jackie Renfrow (17:43):
Well, I just tried to comfort her as much as
possible. I encouraged her toread to watch TV, anything to
keep her occupied. She didn'talways listen to me. But
occasionally she would even totalk on the phone or anything. I
reached out a few times to gether professional help. It helped
(18:06):
to some degree. But face it,when she woke up, she was still
90, 91, 92 and she was dealing,well we know what you're up
against when you're that age.
You don't have a lot of timeleft. I tried to get her active
in some communities. The seniorcitizen community did play bingo
and to play cards anything tointeract with people her own
(18:28):
age. But she she got to whereshe couldn't go out that much.
So she just would talk to somefriends on the phone and talk to
them and about her fears. Andjust make it through another day
day by day. It was the samejourney. She was always afraid
(18:48):
when I was going to leave her.
And I think once again we goback to the heart condition, the
long QT, that I think she wasafraid that she was going to
have a seizure or pass awaywhile I was not home. So at the
end, I tried to limit leavingher unless someone was here with
(19:09):
her. We did have a wonderfulperson came into my mom's life
through hospice. She was avolunteer. And this lady is
absolutely amazing, veryreligious. And she helped get my
mom where she needed to be torealize when she passes, that
her life was just starting. Itwas not ending.
Michael Liben (19:30):
I'm really glad you said that because I'm going
to go back to my neighborupstairs who was a nurse. She
was a nurse in a hospice. Andshe would say more than once,
"I'm not really a nurse, I'm amidwife to the next life".
Jackie Renfrow (19:41):
Exactly.
Michael Liben (19:43):
It's such a nice way to look at it because I
think the hardest thing andwhere that fear comes from is
what's going to happen to me,where am I going? And maybe not
so much where am I going butthat moment when I pass is it
going to hurt? I think that'sthat's universal, I really do.
Jackie Renfrow (19:56):
What do I have to go through to get like that
to get there.
Michael Liben (20:00):
Yeah, exactly.
And I'm gonna venture a guesshere. That part of her fear
wasn't just about herself, I'msure she was afraid for you when
you went out, and she couldn'tsee you, She couldn't protect
you at that moment, either.
Jackie Renfrow (20:12):
I think you're correct. And she would always
tell my husband, that when thisdid happen when she did pass, to
make sure he took care of me. Soyou can see that from a mother
or father's perspective that shewas afraid of leaving her
children, because she wasleaving the her earthly body.
Michael Liben (20:33):
Sure, sure. Did she have an idea that if she did
pass, she would be in a betterposition to protect you all?
Jackie Renfrow (20:39):
I think there at the end she finally, this
volunteer, worked wonders withher, she would come over for
three, four hours a week and gothrough the bible with her
reading their scriptures, andhow wonderful it's going to be
and how she's going to see allof her family that she never
(21:00):
really remembered meeting herfather, because she was only two
when he passed. So yeah, shehelped her in so many ways. And
like you had said, on to thenext chapter in your life,
eternal life. And this isn'tgoodbye. It's just until we see
you again.
Michael Liben (21:18):
One of the things that I remember and I admired
when you were on our podcast somany years ago, was there was a
passion that you both shared foradvocacy. And I know that you
and our executive producer AnnaJaworski, have been talking
about you taking your advocacywork to the next level. Can you
talk to me about what you'replanning to do?
Jackie Renfrow (21:40):
Yes, me and Anna have talked about me possibly
hosting a podcast on long QTsyndrome, hoping to raise
awareness. So I'm very excitedabout this next chapter in my
life. And I'm hoping that we canreach out to some people and
save a lot of lives, bringawareness to this share mom's
(22:03):
story that they have beendiagnosed with long QT it's not
a death sentence. You just haveto take your medication and take
care of yourself and you canlive a fairly normal life.
Michael Liben (22:17):
That begs the question for those of us who are
less educated on long QT, and Iadmit to being one of them, just
how common is it? How manypeople are out there?
Jackie Renfrow (22:25):
According to the NHS, long QT syndrome affects
one in 2000 people.
Michael Liben (22:33):
Wow, that's a lot of people.
Jackie Renfrow (22:35):
Yes it is.
Michael Liben (22:36):
Think about you're in a place, you see
20,000 people. So that's 10people, that have long QT right
where you are.
Jackie Renfrow (22:44):
Exactly and probably not diagnosed to be
quite honest. So that's whypeople need to know where the
closest defibrillator is, andget trained on CPR. I think on a
daily basis, as they're doingresearch, I think they're
finding out more and more aboutthis. And I honestly feel like
it's more common than whatpeople think. And I strongly
(23:07):
encourage people to go to yourdoctor and not worry about them
saying your child does not havea heart defect. have them do an
EKG, have them do anechocardiogram. There's so many
different heart defects outthere. In fact, LeBron James son
just collapsed. Now, I wouldguess, that he probably has some
(23:28):
type of a heart defect. But onceagain, the examinations are
digging in there to find this.
And so they're just collapsingwhen they're playing ball.
Michael Liben (23:41):
I want to amplify that because I think a lot of
people, we see this on TV everyso often. Usually it's in high
school at the end of a reallygood game of football or just
falls over. And then they justgo, "Oh, yeah, by the way, it
looks like he had a congenitalheart defect". People, it's not
hard to check this. Now thesethings show up on EKGs, and
(24:02):
they'll show up on an ultrasoundyou can see all of this stuff.
And there's so much more that weknow now that we knew even when
my daughter was born 26 yearsago. When my daughter was born
at the pediatrician, the firstthing she said was be happy she
was born now not 20 years ago.
Well, it's been 46 years sincethat 20 years ago. And we really
know a lot more. And it's notthat hard to find stuff. And
it's a very simple test. Sopeople take heed, if you're
(24:24):
listening and you have any kindof worry at all, or if you just
just have children, it doesn'thurt to go find out. Most of you
will find out that there'sabsolutely nothing wrong. Okay,
I promise you that. But but afew of you will, and we'll maybe
save somebody here.
Jackie Renfrow (24:41):
And well, and people have to realize the
doctor works for you. You don'twork for the doctor, you're
paying his wages. They'll saythe doctor said no, no, don't
take no. You be your ownadvocate.
Michael Liben (24:53):
Right. And I think that brings me into the
last question here. Your motherwas such a huge part of your
life and for so long. I know youreally miss her. What do you
think you can do to celebrateher now and how much a part of
that would be advocacy as well.
Jackie Renfrow (25:06):
Me and Anna had began talking shortly after mom
passed. And I think Mom wouldhave just been thrilled. To
think about me actually hostinga podcast on a condition that
has affected her whole life.
They may say since she's beentwo years old. So mom would have
been very proud of that.
Anything to raise awareness momwas always on board with and was
(25:30):
never afraid to try anything. Wedid newspaper write ups, I think
two podcasts with you. So yeah,she would be thrilled. And I
just still talk to her just likeshe's here and what's going on.
And I think she knows what'sgoing on. I appreciate you doing
this show to to honor her memoryas well.
Michael Liben (25:53):
Well, I'm glad you said that, because I really
wanted to say I met her onlythree times. Never face to face,
unfortunately. But it was a joyto speak with somebody who is
that alive and that vibrant, andthat aware and concerned and
active. And I met her sevenyears ago. So she was in her mid
80s. And doing great.
Jackie Renfrow (26:15):
She was still a young person then.
Michael Liben (26:17):
She was a kid.
But she had, I want to say shehad the heart of a kid. She had
the attitude of a kid, she wascompletely with it and she had
so much to tell and so manystories that I'll never be able
to get from her now. But so manywonderful things to tell I wish
I had more and more time to justsit there and and go over her
entire life and see the world asshe had seen it. And you don't
get that many opportunitiesanymore. And I just want to say
(26:40):
personally, in for me, and inthe name if, if I if I may be so
bold of the staff here at"Bereaved But Still Me", she's
great lady. She was a wonderfulperson, great person to talk to.
And I would imagine she would bea great friend. And a really
good mother. I can see it, amother, grandmother, great
grandmother, I've seen that.
(27:02):
I've seen the results of it. AndI'm very proud that I knew her
even just a little bit and Ithank you so much for being on
this program with us.
Well, she absolutely loved beingon your program. She thought the
world of you she loved one timeI just turned on the podcast and
put the earbuds and she'slooking at me, "That's me!" and
yeah, she really, I don't thinkshe really knew what we were
(27:24):
doing, Michael. I don't thinkshe had a clue but she did enjoy
listening to it after it wasdone.
Well, she was a wonderful lady.
She was a real grand lady. I'mglad I knew her.
Jackie Renfrow (27:35):
Thank you. I sure miss mom.
Michael Liben (27:39):
And that concludes this episode of
"Bereaved But Still Me". I wantto thank Jackie Renfrow for
sharing her experiences and herstories about her mother and her
wisdom with us. Please join usat the beginning of the month
for a brand new episode. I'll bewith you soon. But, until then,
please remember moving forwardis not moving away.
Anna Jaworski (28:00):
Thank you for joining us. We hope you have
felt supported in your griefjourney. "Bereaved But Still Me"
is a monthly podcast and a newepisode is released on the first
Thursday of each month. You canhear our podcast anywhere you
normally listen to podcasts atany time. Join us again next
month for a brand new episode of"Bereaved But Still Me".
Her greatest achievement is to live to 94
(00:03):
years old and to have children.
Thankfully, she'd never had tobury a child. But when she
buried my children, I will saythat was about as close to
children because she had a verygood, nice bond with my
children. They were very closeto grandma.
Michael Liben (00:26):
What can we do to celebrate the lives of those we
love after they've passed away?
To what does one daughterattribute her mother's long
life? How can we celebrate ourmothers when they're no longer
with us? Welcome friends to"Bereaved But Still Me". Our
purpose is to empower members ofour community. I'm Michael
Liben, and the father of threechildren - Idan, Sapir, and
Liel. Liel, my youngest daughterwas born with a heart defect and
(00:47):
later developed autism and thenepilepsy. Losing her at 15 is
what has brought me here to bethe host of this program. Here
with us today is our guestJackie Renfrow. Jackie's family
was treated for epilepsy foryears. On April 15, 2000, she
received a call saying that herson Jimmy had died from having a
seizure in his sleep. He leftbehind a wife and a daughter.
(01:08):
Just two years after that. Herdaughter, Crissy died the same
way on July 25, 2002, leavingbehind an eight month old baby.
Ten months later, Jackie'smother Wilodene, was rushed to
the hospital for a heartcondition called long QT
syndrome. Having suffered fromseizures for many years,
Wilodene was very fearful of herown death, and many times found
(01:29):
herself very close to thatdeath. Sadly, it wasn't until
2003 that the family finallydiscovered that the many family
members who died had not diedfrom seizures, but rather from a
genetic heart condition. Long QTsyndrome is a specific
arrhythmia that can be lethal ifnot addressed properly. It may
appear as a person with long QTsyndrome is having a seizure.
But actually the heart'selectrical system is not
(01:50):
functioning properly. Wilodean'sdoctors discovered she had long
QT syndrome, and they put aninternal defibrillator into her
chest to help her heart when itexperienced arrhythmias. The
defibrillator allowed Wilodeneto live into her 90s. Together
with her daughter Jackie, sheappeared on our podcast twice,
once to talk about losing lovedones to a misdiagnosis and then
again to talk about living withloss after loss. The links to
(02:11):
these episodes will be in ourshow notes. Sadly, Wilodene
passed in 2023. Today, Jackie ishere with us again, and we have
a wonderful opportunity tocelebrate her mother's life in
this world. Jackie, thank you somuch for joining us again
"Bereaved But Still Me".
Jackie Renfrow (02:27):
It's my pleasure, Michael, thank you for
having me again.
Michael Liben (02:30):
I just want to express our collective sorrow
when we heard about Wilodenerecently, and the chance for us
to say publicly how much wesupport you and how we feel for
what you went through.
Jackie Renfrow (02:42):
Well, thank you so much.
Michael Liben (02:44):
When you and your mother were on the first time,
what did that mean to her to beon the podcast?
Jackie Renfrow (02:48):
It meant the world to my mom because she
truly loved to share our story.
And reach out to people in hopesthat she would help someone
since she had lost both of hergrandchildren to long QT. She
was hoping to save otherpeople's lives since we had no
clue what had taken Jimmy andCrissy's lives. And she just
(03:09):
loved telling the story. So itmeant a lot to mom, and it meant
a lot to me, because now Ialways have a piece of her voice
out there. I can grab and listento.
Michael Liben (03:22):
I'm glad I was able to help be part of that.
And all of us here at theprogram are very, I'd like to
say happy but we're not. But I'dlike to say that we're all very
pleased that we could give thatto you. I don't think at the
time we realized that's what wewere doing. But in retrospect,
it is really a wonderful giftthat I think a lot of people
wish they could have.
Jackie Renfrow (03:43):
Yes. And I'm very thankful that I do have
that, just to hear her voice. Iwas trying to listen to it the
other night. Of course, it'sstill a little too soon, we're
only two months out, but I haveit saved on my phone so anytime
I want to listen to it, I cansure do that.
Michael Liben (03:57):
You know, when we met seven years ago, we had so
much to talk about, we realizedthat we have to record two
programs, because we weretalking about living with a
misdiagnosis which is in itselfa very serious issue. And I want
to get into that a little bitlater. But also loss after loss.
Your whole family was struck bythis it's apparently genetic. So
(04:18):
let's tell our listeners how thediagnosis was finally made, and
how that changed your family'slife.
Jackie Renfrow (04:24):
I lost my son 2000. I received a phone call he
was gone. And then just twoyears later on, while my
daughter was getting ready tohave a baby and I was very
fearful that something was goingto happen to her like it did her
brother and unfortunately it didon July the 25th 20 - or 2002.
My daughter had been goneapproximately 10 months when I
(04:48):
received a phone call that mymom had been rushed to a
hospital and was in intensivecare for her heart, which she
was 72 and I was thinking okay,well have, you know, she
probably has some type of maybehaving a heart attack or
something. And that's when thedoctor took us into a room to
tell us our mom had a heartarrhythmia called long QT
(05:11):
syndrome, and most commonlycould affect younger people, and
even cause death in them. Andthat's when I looked up to the
doctor and made eye contact withhim and told him I had just lost
my children, and I had no cluewhy I had lost my children. He
looks at me and says youprobably have long QT. They took
(05:33):
me and my sister and did the EKGand our EKG course looked weird.
So then we started undergoingthe proper test. And we did have
long QT syndrome. And me and mysister actually, both received a
heart defibrillator about amonth later. And we even shared
our rooms together.
Michael Liben (05:53):
What grabs me here, though, is that Wilodene
had seen people dying all aroundher for 70 plus years, and they
didn't know what it was, Iguess, because technology hadn't
come around to figuring thatout. But but suddenly they did.
So did it all come into focusfor her and did it change her in
a way that now she had somethingspecific to talk about and to
(06:14):
warn people about and, andsomething to work for something
to be involved with.
Jackie Renfrow (06:18):
I can't even explain to you after so many
years, it was just like, all ofa sudden this jigsaw puzzle was
coming together. And then thepiece just went right in there
and it explained everything fromwhy we had to cover the phones
when mom was sleeping to keepher from having a seizure
because we had every symptom outthere. But no one had just come
(06:41):
across it or even checked ourheart.
Michael Liben (06:45):
Why did you have to cover the phone? I'm curious,
how did that help prevent theseizure?
Jackie Renfrow (06:48):
When you're in a sound sleep with type two, type
two is very dangerous, beingstartled. And if you're
startled, it can cause yourheart to go into an arrhythmia,
and it stops pumping blood whichcuts off the oxygen to your
brain and causes a seizure.
Michael Liben (07:05):
Oh my gosh...
Jackie Renfrow (07:08):
Well, my grandkids once I found out the
diagnosis, I would tell theschools to pull them when there
was a fire drill. So it wouldn'tstartle them.
Michael Liben (07:18):
Oh, boy. I can't even imagine what that's like if
I were afraid of being startled,I think turning on a light would
startle me.
Jackie Renfrow (07:24):
It does. It really does. I'm scared of the
dark because of that.
Michael Liben (07:28):
I want to try to understand what it's like to be
in that family to be a part ofthat. It's really hard because
everything is wrong. Nothing isgood. How do you spend your day
like that?
Jackie Renfrow (07:40):
I don't think about it too much for myself. I
think about it for mygrandchildren. I live in fear
for them. But as for myself, Ijust try to live my life as
normal as I can. And hopenothing happens. And I have my
defibrillator in the event thatdoes and it will save me. I
worry more about my greatgrandson, something happening to
(08:01):
him because he's only he's justa year and a half old.
Michael Liben (08:04):
Does he have long QT?
Jackie Renfrow (08:06):
Yes, he does.
Unfortunately.
Anna Jaworski (08:10):
You're listening to "Bereaved But Still Me". If
you have a question or commentthat you would like addressed on
our program, please send anemail to Michael Liben at
michael@bereavedbutstillme.com.
That'smichael@bereavedbutstillme.com
This content is not intended tobe a substitute for professional
medical advice, diagnosis, ortreatment. The opinions
(08:34):
expressed in a podcast are notthose of Hearts Unite the Globe,
but of the hosts and guests andare intended to spark discussion
about issues pertaining tocongenital heart disease or
bereavement.
Michael Liben (08:48):
Jackie with everything that your mother was
carrying, you know that shelived into her 90s which is
pretty good. Now, you know, I'mabout to bite myself on the lip
for saying that because I'vealways said that we don't
congratulate people for beingolder or whatever we think is
older and I say well, that'sokay. Because it's never okay.
And your mother is still yourmother even if she lives to be
(09:08):
1000. But 93 is still prettygood. So what do you attribute
her longevity? Was it herfamily? Was there something in
her spirit that just refused togive up? So something that you
all did together? How did howdid that happen?
Jackie Renfrow (09:22):
You know, I, her mom lived to be 93. Actually mom
lived to be 94 which I was veryfearful when she did turn 93
that that would be the yearbecause she seemed to take after
her mom quite a bit. But thatlast year, I just started to
seeing the big decline in mombut she had a strong will to
live she was afraid to die. I'mnot gonna lie, she was very
(09:46):
fearful of death and I do blamea lot of that on our heart
condition on her having thosehorrible seizures for years. And
I think it scared her so bad isone of the reasons she was just
scared of the actual passing andwhat it would be like for. I do
think a lot of it is because ofthe long QT actually.
Michael Liben (10:09):
So you're saying that part of her longevity was a
fear of dying. She just refusedto die because she was afraid to
go there.
Jackie Renfrow (10:15):
I agree. Yeah.
And she had very good caretaker.
I have to give myself credit forthat. But yeah, she was very
afraid of that. And I'm going totell you about mom, she took her
medication right on time, shemight have forgot what she ate
for lunch but by gosh, sheremembered that medication.
Michael Liben (10:32):
Well, that's good, because I can't remember
what I had for breakfast, or Ican't remember my medication
some days. And the worst. Theworst is, you've taken it. The
box in front of you is empty.
And you go, did I take that now?
Or was it this morning?
Jackie Renfrow (10:46):
I just have to go over that with her quite
often. I would say that to hershe would say, "I've taken my
medicine". I said what did youjust eat? She goes, "I have no
clue but did I take mymedicine?"
Michael Liben (10:57):
We've all been so do with age, by the way. You're
right. That's just flat outfear.
Jackie Renfrow (11:05):
Yes. But she was also fearful she didn't take her
medicine that it would,consequences will be a seizure.
Michael Liben (11:12):
I know that so well. I know that oh, so well.
What would you say though? Wouldyou say that she had? No let's
let's put a more positive spinon it rather than just the fear
of death. Did she have some kindof joy of living which she did
she live for her family? Didshe? Was she a family kind of
person did you all come over fordinner? A little bit of that,
let's, we want to celebrate her,we want to talk about some
really happy moments.
Jackie Renfrow (11:33):
Well, mom loved her family. She did. She just
wanted to live. She reallywanted to live to play. She
loved to play cards. She lovedto read books. And she loved to
tell her story about what shehad been through. And that gave
her a sense of fulfillment. Shedid love her grandkids and her
great grandkids. And actuallyshe had great, great grandkids.
Michael Liben (11:56):
Good on her. I had a neighbor who had over 60
grandchildren and greatgrandchildren. And she died just
before number 60 arrived. Andshe knew everyone by their name.
She couldn't tell you maybe whatshe had for breakfast, but she
knew every kid by name and byorder. There's something special
about that, I think.
Jackie Renfrow (12:17):
And what was her age?
Michael Liben (12:18):
She was 93 when she died.
Jackie Renfrow (12:20):
Wow. That's unbelievable.
Michael Liben (12:22):
I'm going to digress for a moment. Well, she
lived upstairs for me and herdaughter occasionally would
spend days and nights with her.
And it was clear to the daughterthat it was time for her to go.
But she was waiting. She wasrefusing to go and she was
suffering. She wanted to seenumber 60 which was due any day.
And her daughter who is a nursesaid to her, she said, "Mommy,
(12:42):
you'll see him first". And withthat, she left.
Jackie Renfrow (12:48):
Oh, that's so sweet.
Michael Liben (12:51):
Yeah, there's something about being 90 plus
that makes you very sweet. Butbut yeah -
Jackie Renfrow (12:59):
I agree.
Michael Liben (13:01):
They're both wonderful people. And the woman
who was 93, who lived upstairsfrom me was a surrogate
grandmother to my children. Shewould take in sewing, I think at
least up to age 90, she wouldtake in sewing. And she would
never charge my kids foranything. She said I don't
charge children. So anything Ibrought her that was for my kids
was free. She was just the kindof person. She wasn't really
(13:21):
doing it to make money she wasjust doing to keep her hands
busy, you know, but it was athing, it was a thing. I get the
feeling Wilodene was that kindof a grandmotherly figure to
people who just needed agrandmother?
Jackie Renfrow (13:33):
By great yeah, she was very well and example
was my friend. Her daughter inlaw was passing away from
cancer. And she had two youngchildren and mom, of course
wanted to reach out and, anddonate a little bit of money to
help them out. So yes, that'sthe kind of person she is or
was.
Michael Liben (13:54):
What would you say is her greatest achievement
out of all the things that she'sdone?
Jackie Renfrow (13:58):
Her greatest achievement is to live to 94
years old, and good to havechildren. Thankfully, she'd
never had to bury a child. Butwhen she buried my children, I
would say that was about asclose to children because she
had a very good, nice bond withmy children. They were very
close to grandma. And I thinkone of her big achievements also
(14:21):
is I would like to I think I'dbrought this up to you before
but years ago, my mom had gotthe job at a hospital in the
state of Indiana, and shecouldn't type so they moved her
to the snack bar and then shewent on and received her degree
to be a QMA where she wasactually handing out meds to
(14:42):
patients and that was a hugeaccomplishment for her.
Especially at the age of 55.
Michael Liben (14:49):
And that was before she knew about long QT
right? So -
Jackie Renfrow (14:52):
Yes, yes. And she went on and got a couple of
degrees and was passing out medsto the patients.
Michael Liben (15:00):
That's terrific.
I didn't realize she haddegrees. And nonetheless, she
went and got a higher educationat age 50. That's terrific.
Jackie Renfrow (15:09):
It is. And so despite everything that, yeah,
because she had four kids sheneeded to get raised. And she
didn't really have a skill inany particular thing. So she
ended up in the snack bar andthen went on and got that skill
trade. I think that's amazing.
Michael Liben (15:27):
That's terrific.
Hats off. I want to ask you onemore question here before we
take a break. If you had to sumup your mother's life in just
one sentence, what would it be?
And I'm a nice guy. So I'll giveyou three or four sentences.
Jackie Renfrow (15:38):
I hope so. How would I say mom lived life?
Fast and furious. I mean, my momwas very honest and direct, but
could be kind when she wanted tobe if you weren't deserving of
kindness. If you weren'tdeserving, she would tell you.
Michael Liben (15:57):
Well, then let me just say how lucky I feel
because I spoke to her threetimes those years ago, each for
oh, I don't know, more than anhour. And I never got the
impression from her that shedidn't think I was worthy. And I
appreciate it.
Jackie Renfrow (16:11):
Now, because you wouldn't have gotten that
impression if she thought youwas you would have known. It's
probably the on her face. Shewas a very good person.
Michael Liben (16:24):
Well, I didn't see her face. I'll take your
word for it. But you were there,you would know.
Jackie Renfrow (16:28):
Oh, yes. Boy, do I know that look.
Michael Liben (16:33):
So she didn't suffer fools lightly. But what
else can we say about her? Yougot another half a minute.
Jackie Renfrow (16:37):
She did not mince words. No, not at all.
Unfortunately, that gene couldhave been passed on.
Michael Liben (16:52):
If you've enjoyed listening to this program,
please visit our websiteheartsunitetheglobe.org and make
a contribution. This program isa presentation of Hearts Unite
the Globe. And as part of theHUG Podcast Network. Hearts
Unite the Globe is a nonprofitorganization devoted to
providing resources to thecongenital heart defect
community to educate, empower,and enrich the lives of our
community members. If you wouldlike access to free resources
(17:15):
pertaining to the CHD community,please visit our website at
congenitalheartdefects.com. Forinformation about CHD, hospitals
that treat CHD survivors, summercamps for CHD families and much,
much more.
Jackie, we know that your motherlived her life in fear after
(17:36):
seeing so many people around herdie over the years. What did you
do to help her try to cope withthat?
Jackie Renfrow (17:43):
Well, I just tried to comfort her as much as
possible. I encouraged her toread to watch TV, anything to
keep her occupied. She didn'talways listen to me. But
occasionally she would even totalk on the phone or anything. I
reached out a few times to gether professional help. It helped
(18:06):
to some degree. But face it,when she woke up, she was still
90, 91, 92 and she was dealing,well we know what you're up
against when you're that age.
You don't have a lot of timeleft. I tried to get her active
in some communities. The seniorcitizen community did play bingo
and to play cards anything tointeract with people her own
(18:28):
age. But she she got to whereshe couldn't go out that much.
So she just would talk to somefriends on the phone and talk to
them and about her fears. Andjust make it through another day
day by day. It was the samejourney. She was always afraid
(18:48):
when I was going to leave her.
And I think once again we goback to the heart condition, the
long QT, that I think she wasafraid that she was going to
have a seizure or pass awaywhile I was not home. So at the
end, I tried to limit leavingher unless someone was here with
(19:09):
her. We did have a wonderfulperson came into my mom's life
through hospice. She was avolunteer. And this lady is
absolutely amazing, veryreligious. And she helped get my
mom where she needed to be torealize when she passes, that
her life was just starting. Itwas not ending.
Michael Liben (19:30):
I'm really glad you said that because I'm going
to go back to my neighborupstairs who was a nurse. She
was a nurse in a hospice. Andshe would say more than once,
"I'm not really a nurse, I'm amidwife to the next life".
Jackie Renfrow (19:41):
Exactly.
Michael Liben (19:43):
It's such a nice way to look at it because I
think the hardest thing andwhere that fear comes from is
what's going to happen to me,where am I going? And maybe not
so much where am I going butthat moment when I pass is it
going to hurt? I think that'sthat's universal, I really do.
Jackie Renfrow (19:56):
What do I have to go through to get like that
to get there.
Michael Liben (20:00):
Yeah, exactly.
And I'm gonna venture a guesshere. That part of her fear
wasn't just about herself, I'msure she was afraid for you when
you went out, and she couldn'tsee you, She couldn't protect
you at that moment, either.
Jackie Renfrow (20:12):
I think you're correct. And she would always
tell my husband, that when thisdid happen when she did pass, to
make sure he took care of me. Soyou can see that from a mother
or father's perspective that shewas afraid of leaving her
children, because she wasleaving the her earthly body.
Michael Liben (20:33):
Sure, sure. Did she have an idea that if she did
pass, she would be in a betterposition to protect you all?
Jackie Renfrow (20:39):
I think there at the end she finally, this
volunteer, worked wonders withher, she would come over for
three, four hours a week and gothrough the bible with her
reading their scriptures, andhow wonderful it's going to be
and how she's going to see allof her family that she never
(21:00):
really remembered meeting herfather, because she was only two
when he passed. So yeah, shehelped her in so many ways. And
like you had said, on to thenext chapter in your life,
eternal life. And this isn'tgoodbye. It's just until we see
you again.
Michael Liben (21:18):
One of the things that I remember and I admired
when you were on our podcast somany years ago, was there was a
passion that you both shared foradvocacy. And I know that you
and our executive producer AnnaJaworski, have been talking
about you taking your advocacywork to the next level. Can you
talk to me about what you'replanning to do?
Jackie Renfrow (21:40):
Yes, me and Anna have talked about me possibly
hosting a podcast on long QTsyndrome, hoping to raise
awareness. So I'm very excitedabout this next chapter in my
life. And I'm hoping that we canreach out to some people and
save a lot of lives, bringawareness to this share mom's
(22:03):
story that they have beendiagnosed with long QT it's not
a death sentence. You just haveto take your medication and take
care of yourself and you canlive a fairly normal life.
Michael Liben (22:17):
That begs the question for those of us who are
less educated on long QT, and Iadmit to being one of them, just
how common is it? How manypeople are out there?
Jackie Renfrow (22:25):
According to the NHS, long QT syndrome affects
one in 2000 people.
Michael Liben (22:33):
Wow, that's a lot of people.
Jackie Renfrow (22:35):
Yes it is.
Michael Liben (22:36):
Think about you're in a place, you see
20,000 people. So that's 10people, that have long QT right
where you are.
Jackie Renfrow (22:44):
Exactly and probably not diagnosed to be
quite honest. So that's whypeople need to know where the
closest defibrillator is, andget trained on CPR. I think on a
daily basis, as they're doingresearch, I think they're
finding out more and more aboutthis. And I honestly feel like
it's more common than whatpeople think. And I strongly
(23:07):
encourage people to go to yourdoctor and not worry about them
saying your child does not havea heart defect. have them do an
EKG, have them do anechocardiogram. There's so many
different heart defects outthere. In fact, LeBron James son
just collapsed. Now, I wouldguess, that he probably has some
(23:28):
type of a heart defect. But onceagain, the examinations are
digging in there to find this.
And so they're just collapsingwhen they're playing ball.
Michael Liben (23:41):
I want to amplify that because I think a lot of
people, we see this on TV everyso often. Usually it's in high
school at the end of a reallygood game of football or just
falls over. And then they justgo, "Oh, yeah, by the way, it
looks like he had a congenitalheart defect". People, it's not
hard to check this. Now thesethings show up on EKGs, and
(24:02):
they'll show up on an ultrasoundyou can see all of this stuff.
And there's so much more that weknow now that we knew even when
my daughter was born 26 yearsago. When my daughter was born
at the pediatrician, the firstthing she said was be happy she
was born now not 20 years ago.
Well, it's been 46 years sincethat 20 years ago. And we really
know a lot more. And it's notthat hard to find stuff. And
it's a very simple test. Sopeople take heed, if you're
(24:24):
listening and you have any kindof worry at all, or if you just
just have children, it doesn'thurt to go find out. Most of you
will find out that there'sabsolutely nothing wrong. Okay,
I promise you that. But but afew of you will, and we'll maybe
save somebody here.
Jackie Renfrow (24:41):
And well, and people have to realize the
doctor works for you. You don'twork for the doctor, you're
paying his wages. They'll saythe doctor said no, no, don't
take no. You be your ownadvocate.
Michael Liben (24:53):
Right. And I think that brings me into the
last question here. Your motherwas such a huge part of your
life and for so long. I know youreally miss her. What do you
think you can do to celebrateher now and how much a part of
that would be advocacy as well.
Jackie Renfrow (25:06):
Me and Anna had began talking shortly after mom
passed. And I think Mom wouldhave just been thrilled. To
think about me actually hostinga podcast on a condition that
has affected her whole life.
They may say since she's beentwo years old. So mom would have
been very proud of that.
Anything to raise awareness momwas always on board with and was
(25:30):
never afraid to try anything. Wedid newspaper write ups, I think
two podcasts with you. So yeah,she would be thrilled. And I
just still talk to her just likeshe's here and what's going on.
And I think she knows what'sgoing on. I appreciate you doing
this show to to honor her memoryas well.
Michael Liben (25:53):
Well, I'm glad you said that, because I really
wanted to say I met her onlythree times. Never face to face,
unfortunately. But it was a joyto speak with somebody who is
that alive and that vibrant, andthat aware and concerned and
active. And I met her sevenyears ago. So she was in her mid
80s. And doing great.
Jackie Renfrow (26:15):
She was still a young person then.
Michael Liben (26:17):
She was a kid.
But she had, I want to say shehad the heart of a kid. She had
the attitude of a kid, she wascompletely with it and she had
so much to tell and so manystories that I'll never be able
to get from her now. But so manywonderful things to tell I wish
I had more and more time to justsit there and and go over her
entire life and see the world asshe had seen it. And you don't
get that many opportunitiesanymore. And I just want to say
(26:40):
personally, in for me, and inthe name if, if I if I may be so
bold of the staff here at"Bereaved But Still Me", she's
great lady. She was a wonderfulperson, great person to talk to.
And I would imagine she would bea great friend. And a really
good mother. I can see it, amother, grandmother, great
grandmother, I've seen that.
(27:02):
I've seen the results of it. AndI'm very proud that I knew her
even just a little bit and Ithank you so much for being on
this program with us.
Well, she absolutely loved beingon your program. She thought the
world of you she loved one timeI just turned on the podcast and
put the earbuds and she'slooking at me, "That's me!" and
yeah, she really, I don't thinkshe really knew what we were
(27:24):
doing, Michael. I don't thinkshe had a clue but she did enjoy
listening to it after it wasdone.
Well, she was a wonderful lady.
She was a real grand lady. I'mglad I knew her.
Jackie Renfrow (27:35):
Thank you. I sure miss mom.
Michael Liben (27:39):
And that concludes this episode of
"Bereaved But Still Me". I wantto thank Jackie Renfrow for
sharing her experiences and herstories about her mother and her
wisdom with us. Please join usat the beginning of the month
for a brand new episode. I'll bewith you soon. But, until then,
please remember moving forwardis not moving away.
Anna Jaworski (28:00):
Thank you for joining us. We hope you have
felt supported in your griefjourney. "Bereaved But Still Me"
is a monthly podcast and a newepisode is released on the first
Thursday of each month. You canhear our podcast anywhere you
normally listen to podcasts atany time. Join us again next
month for a brand new episode of"Bereaved But Still Me".
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