September 10, 2025 • 51 mins
Devorah was just five years old when she finally became a big sister. She adored her tiny newborn sibling, swaddled in pink, and stepped naturally into the role of the best big sister.
At first, Devorah didn’t think it was unusual that her house was filled with nurses and therapists coming and going. To her, that was simply what a newborn needed. But as she grew older and noticed her friends’ relationships with their sisters, she realized that her own little sister, Chanie, was different. The things her friends did with their siblings were things she would never be able to do with Chanie—because Chanie was born with special needs.
Still, Devorah's love never dimmed. She cared for Chanie, played with her, and shared her life with her. Their bond was unshakable. When Chanie was sick and in the hospital, Devorah spent as much time by her side as she could. Chanie would call, “Devorah, when are you coming?” And Devorah always came.
Although their parents were equally dedicated, the sisterly connection between Devorah and Chanie was uniquely powerful. And when Chanie was niftar, Devorah was devastated. They may never have done the same things as other sisters, but their fierce love was beyond comparison.
Today, Devorah’s home still holds Chanie’s presence. Pictures of her sister hang on the fridge. And when Devorah lifts her baby daughter—named Chanie—she whispers, “You are named after this special sister of mine. You share her name. You have a glorious namesake.”
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Welcome to the Grief Journey Podcast hosted by Mrs
Miriam Ribiat and brought to youby Merim.
Merim is an organizationdedicated to supporting families
who have experienced the lossof a child.
It was founded by Eloi Nishmas,nechama Liba and Miriam Holman.
Despite her illness, miriamdevoted herself to addressing
(00:23):
the needs of parents andsiblings grappling with the
immense pain of losing a child.
She felt this loss deeply,having experienced it firsthand
when her older sister, nahamaLiba, passed away.
Merim continues to uplift andexpand on the work Miriam began,
a mission carried forward byher parents with great
dedication.
Again, a mission carriedforward by her parents with
(00:44):
great dedication.
If you have any questions orcomments for the speaker, or if
you'd like to suggest a guestfor the podcast, please email us
at relieffromgrief at mayrimorg.
Speaker 2 (00:59):
Hi everybody, thank you so much for joining me here
today on the Grieving Podcast.
So today I'm very, very excitedbecause today we have Devorah
Rosenfeld, and Devorah Rosenfeldhas a very interesting story
that I am sure will be much likemany, many people.
So, devorah, thank you so somuch for coming on.
Speaker 3 (01:19):
Thank you so much for having me on.
Speaker 2 (01:22):
Okay, so why don't we jump right into it and why
don't you start off with tellingus a little bit about what
happened when you were fiveyears old?
Speaker 3 (01:31):
So when I was five years old, I was really excited
to have a new baby sister and Iwas going to be the big sister
and I just couldn't wait to meether.
I was so excited anticipatingmy mother giving birth, and when
she was born March 28th 1992,we were five years apart it was
(01:53):
so exciting for us and I justcouldn't wait to meet her.
Of course I didn't get to meether right away because she was
born with special needs and shedidn't come home right away from
the hospital.
There were complications and ittook a few weeks, but for me I
didn't have anything to compareit to, so I didn't know that was
not a normal thing for a babynot to come home right away.
And so when she did come home Iwas so excited to meet her and
(02:15):
I didn't really realize thatthings were going to be so
different right away.
But we did have a lot of nursesin the house helping.
Speaker 2 (02:27):
You know the different shifts taking care of
her, so you didn't realize thatthis wasn't typical for a
newborn baby.
This is just what you knew.
The baby comes home and peopleare in and out of the house.
Speaker 3 (02:37):
Right, and I thought that that was a normal thing,
because she's a new baby and sheneeds a lot of care and I'm
five, so my mind, this is whatis supposed to happen.
Speaker 2 (02:47):
Right, right, wow.
So when did you realize thatone second?
She isn't the same like otherbabies or like other sisters.
Speaker 3 (02:57):
Right.
So a few years, I would say,into my elementary school.
You know I would see that otherkids are going to, other
siblings are going to school anddeveloping differently.
And she was home a lot.
She was sick often.
She had to go to a lot ofdoctors.
She had many therapists come tothe house speech, pt, OT, you
(03:21):
know, feeding therapy, and myparents tried having her learn
to eat by mouth and she just hada lot of trouble with it.
Food was aspirating a lot intothe lungs and she eventually
needed a tube, feeding tube, putin.
So I did see that that wasdifferent.
There was a lot of machines.
She had to be hospitalizedoften.
(03:42):
She got sick a lot.
So I started to see things weredifferent and I would talk to
my friends a lot about her, myteachers.
I would write about her a lotin school and creative writing.
I would write about myexperiences with my sister and
what it was like for her to goto the doctor and then at the
doctor's office needing to hearthat she may need to be
hospitalized.
Things got, you know, worse inher illness what she was dealing
(04:05):
with.
So I definitely started to seeit when I was, you know, I would
say in elementary school, a fewyears later wow, did you keep
those writings that you have?
yeah, so it happens to be theschool after I graduated
elementary school.
They save some of your writingsthrough.
I guess from every teacher theyask some of your writings.
I guess from every teacher theyask the teachers to give you
(04:27):
one piece of writing that youdid that was really good and
they saved it in a portfolio forus.
Speaker 2 (04:34):
So when I graduated I have one of the writings that I
did about her and it wasinteresting, like years later,
(04:56):
to look back and see from thatperspective, as a second or
third greeter, what I had to sayabout her and the perspective
of what I saw of having a sisterwith special needs at that age.
Speaker 3 (05:01):
Do you remember that you had those perspectives or it
was like really like newinformation for you?
I did remember it but it wasstill like so funny to read it
and I really wrote about it andlike such a play-by-play, you
know, just saying we had to goto this doctor and I say
specifically her name and whathappened at the doctor's office,
like every single thing thatthe doctor did to evaluate her,
and you know who my parents hadto call, and you know my parents
(05:22):
had to call and you know allthose kind of things that were
going on.
I really was absorbing it.
I was very aware that there wassomething different and I went
with my parents a lot, with mysisters, for different
appointments Not always, butsometimes I did.
And so you know I kept hercompany and made her happy, I
(05:47):
distracted her, played with her.
Speaker 2 (05:49):
So I knew um, I definitely knew that she was she
, she had an illness wow, and Iguess instinctively you knew
that it was sort of your job toplay with her and make her happy
and like sort of take care ofher.
Speaker 3 (06:02):
I did without anyone saying I.
I did do it on my own, but Iloved it.
I just loved being the bigsister, I loved playing with her
and I just enjoyed it so, somuch.
Speaker 2 (06:15):
Was there like an overprotective feeling that you
had?
Speaker 3 (06:18):
For sure.
Definitely I would go in thestreet with her.
You know she had a specialstroller and you know there
would be other kids that wouldmaybe stare at her, look at her
differently.
And as she got older and shewas able to speak more, she
would stick up for herself andshe would say don't stare at me.
But when she was younger shedidn't always say things and I
(06:41):
would speak up for her.
I didn't want anyone to makefun of her and I didn't want
people to look at herdifferently and it was.
You know I felt that that was myjob as a big sister to protect
her and especially when she wassick, I would spend time with
her, I would do fun activitieswith her.
I would take her on trips, Iwould, when she was sick in the
(07:03):
hospital, I would go visit herall the time constantly.
You know she would look forwardto me coming to the hospital
and she would ask my parentswhen's Vora coming, when's Vora
coming?
So she always looked forward tothat and and the toys that
would bring her and theactivities and the projects.
She would, you know, love doingthat with me.
You know, when she was sick inthe hospital wow, so does that?
Speaker 2 (07:28):
do you see that that plays into your life today,
where you have a certainoverprotectiveness of people or
are very strong like um trait,that you have to stick up for
people that you feel like arebeing missed, you know, not
handled, mistreated or whatever?
Speaker 3 (07:44):
So I definitely think I do and I think I have also an
empathetic part of me that camefrom having a sister with
special needs that I look outfor people that are maybe
misunderstood or need extrapatience or understanding of
their situation.
Especially as a teacher, Ireally tap into that because I
(08:05):
teach children with all kinds ofabilities and some of them have
learning differences and Ithink that growing up with the
sisters with special needs gaveme that perspective of wait.
This child may need somethingdifferent.
This person may need adifferent understanding, a
different level of patience, andI think that helped me
tremendously in life and alsojust really having understanding
(08:29):
for, for people in general.
That really helped me a lot.
Speaker 2 (08:39):
So one second.
So she was, she was, so she wasable to do projects and play
with toys.
So what does that mean?
That like mentally she wasmostly okay and even like her OT
skills were okay.
Speaker 3 (08:52):
So she definitely had a lot of early intervention.
Um, when she was a child andshe had therapy throughout her
whole life, you know as a childin school, I would say that she
definitely picked up some skills.
She learned how to write I meannot so clearly, but her
handwriting was pretty decent.
She definitely enjoyed usingthings with her hands.
(09:13):
Fine motor skills were actuallypretty good.
She would do like those beads,the perler beads, and she would
love to color, color by number,like seeing things that are very
small, that I would even likeget frustrated.
She wouldn't.
She loved it.
She would have a lot of pain,things, those kinds of things
she was.
Her illness affected herphysical health a lot.
(09:35):
She had a lot of issues withbreathing, feeding her blood
pressure.
She was on a lot of medicationto regulate her blood pressure.
So every morning she would wakeup nauseous and she wouldn't
feel well every single day.
But you wouldn't know it, shealways had a big smile on her
face.
You know, in spite of hermedical challenges, she smiled
(09:59):
and she was, she had joy abouther.
I mean, everybody who you ask,tell me about your sister Hani,
they would say, oh, her smile.
She just lit up the room.
It was just contagious and yeah, so it did affect her medically
and emotionally.
I think she really understoodpeople.
She understood life.
I could talk to her about mydating.
(10:22):
She would ask me questionsabout who you're going out with.
Did you go on a date last night?
But she learning she had a lotof learning issues.
You know she was definitelyvery delayed.
She wasn't on her level.
You know she was 28 when shepassed away, but she was not on
(10:45):
academically, her reading leveland her writing and all that was
definitely buried the lead.
Speaker 2 (10:48):
So what about her?
Like she understood what wasgoing on, she never wanted to
know why she's not going awaywith friends or why she's not
getting married, or like shedidn't wonder why she's
different.
Speaker 3 (10:59):
So she didn't ask much about.
She never asked about gettingmarried, about doing things.
She went to camp.
That was her greatest fun.
She looked forward to it.
She went to Camp SimpsonSpecial for a couple of summers
and she absolutely lookedforward to it.
So she knew, like I went tosleepaway camp, she went to
sleepaway camp.
She didn't really ask about, Imean, friends-wise wise.
(11:24):
She had, you know, some friendsin school.
They were different than her,but she, this is what she was
used to.
She was used to being with alltypes of kids in school, so she
didn't really ask us about that.
Speaker 2 (11:40):
Wow, so what happened when she was nifted?
It was suddenly or she was sick.
Speaker 3 (11:42):
Wow, so what happened when she was?
Speaker 2 (11:43):
nifted.
It was suddenly or she was sick.
Speaker 3 (11:45):
So she was born with a genetic illness and she was um
.
She was sick her whole life,you know she was.
She definitely um, had a lot ofmedical challenges and it was
her.
Genetic illness could affecteveryone differently.
It's like a span.
You know some kids are mildlyaffected, everyone differently.
(12:05):
It's like a span.
You know some kids are mildlyaffected, some very much, and
she definitely was.
She had a bad case of it andshe needed a lot of treatments
and she would always go to thedoctor constantly.
She had a doctor in the citywho she followed very closely
with different medications.
They were always tryingdifferent treatments to help her
to make her life easier, morefunctional, and they were doing
a lot of research, you know, totry to help her to make her life
easier, more functional, andthey were doing a lot of
research, you know, to try tohelp, you know, her have the
(12:28):
best life that she could.
And I would say in the last, youknow she had definitely
different issues that came upwith her illness over time and
we were worried.
I would say as an adult Istarted to worry more about her.
I started to realize,definitely in my teenage years
and my adulthood, how fragileher illness was and how
(12:52):
unpredictable and how she couldhave some type of episode
regarding her lungs and maybeshe wouldn't come out of it.
A very bad pneumonia she's had,where she had trouble breathing
and there were different.
She had seizures, she haddifferent challenges and when I,
(13:13):
I would say, the last year ofher life, she started having a
lot of these fainting episodeswhich we never really saw.
This was something new and shewould faint, but not just like
for a few seconds, and come back.
She would faint for a longperiods of time that it wasn't
stopping.
And it was the year of COVID,so the doctors didn't really
want her to go to the hospitalbecause they were afraid they
(13:34):
didn't want her to get COVID.
And so she was home and we weretrying to figure out what it is
.
They were trying to regulateher medication and they sent us
a video of what she's doing andthen eventually we just had to
take her into the hospitalbecause we had to figure this
out.
And so we took her into thehospital and they were running
tests to see if it was seizures.
It was not, it was ruled out,but she was already on
(13:56):
medication for that and theyjust couldn't figure it out and
they were ready to discharge herand they discharged her right
outside the hospital.
She had another episode andHadsela had to take her right
back in and they just weren'tfiguring it out.
They were just running testsand they just didn't know what
it was causing these episodes tohappen.
(14:16):
And on the second day of RoshHashanah she went into cardiac
arrest and she had to be put onthe respirator and she went into
a coma and it was very, veryhard to see.
I mean, we weren't expecting it, you know.
We were just expecting thedoctors to eventually figure it
out, do something with hermedication.
(14:37):
We were just desperate to seesomething happen, you know, a
change for the better, and wejust weren't seeing that happen.
It was very you felt veryhelpless for her.
You just wanted her to getbetter and while she was in the
hospital she also got pneumonia.
So she was dealing with that ontop of it and a lot of
medication to help her getbetter.
She just looked very, very sickand then she went to cardiac
(15:01):
arrest, she went into a coma andthings.
Her whole body deterioratedvery, very quickly.
She was sick, for she was in acoma for five and a half weeks
um, and it was really the mostpainful thing to watch someone
you love die you know, wow, youwere with her in the hospital
like around the clock yeah, so,yeah, we all were there with her
(15:23):
.
It was so covid, so they werevery careful with allowing
visitors.
Of course she was allowedbecause she had special needs.
She was allowed to have someonewith her.
It was COVID, so they were verycareful with allowing visitors.
Of course she was allowedbecause she had special needs.
She was allowed to have someoneon her bedside all the time.
But, my, you know, we tookturns being with her and we
never left her alone and it wasCOVID.
So I was as a teacher, I wasallowed to work remote, so I
(15:46):
moved myself to the city becauseshe was in NYU hospital and we,
I did, I would see her and thenI would go to, you know, my
Zoom sessions and I would goback and see her.
So that kind of worked for mebecause I was able to be there
so much more really all the time, practically because of that
situation and, um, yeah, it was,it was.
(16:09):
It was very hard to see herlike that it really was, cause
that's not who she was my wholelife and I didn't know her that
way.
You know, I knew her to be sohappy and joyful and then she
was so sick and then, all of asudden, you know you're just
standing by her bedside seeingmaybe she'll wake up, she'll
come out of it, and was justlike everything changed
overnight wow, wow, um, I hear Iheard from you know, a lot of
(16:36):
parents that lost special needschildren, about like almost the,
the, that they, that they, theymaybe didn't even realize that
they were carrying like aconstant burden of fear that
something might happen.
Speaker 2 (16:52):
Like one mother or father I forgot who said to me
like they, they didn't sleepnormally for eight years because
they were always listening tomake sure if their special needs
child needed help.
So they didn't have a normalnight's sleep until the child
you know it was nifter.
They didn't say this in acomplaining way, they were just
stating facts.
But the, the almost like the,the relief of, like oh, I don't
have to be nervous thatsomeone's dying.
(17:12):
Like that, that kind of waslike, wow, like that, that's new
.
Like I don't have this big feararound my neck.
Speaker 3 (17:17):
I'm curious if, as a sibling, I'm, since, since you
were like an adult, if you alsoreally had that same kind of
something, like, you know, justaround you like, oh, she could
die any minute.
I definitely felt it when shegot sick.
You know, something more thanthe regular everyday challenge
that she dealt with and as herillness got worse, in some ways,
(17:40):
you know, you, you realize fromso many different hospital
visits that, oh, it could havehappened.
Then, you know, like threeyears before she passed away, we
were like she was really reallysick, she could have died.
Then, you know, and we, yeah,we had that worry.
You know, we sent her to camp,she went to Kids of Courage, she
went on trips and we didn't go.
You know, a few years I did gowith her, I was her counselor
(18:02):
and I had, you know, counselorsthat also helped me take care of
her.
But there were a few years thatwe sent her with other
counselors and we worried, youknow, when she wasn't home with
us, my mother would worry, myfather would worry.
Yeah, they had that constantfear that something would happen
.
You would end up in thehospital and you, in the back of
your head, you know, didn'tknow if that was going to be the
(18:23):
time that it's going to be theend.
You definitely have thatfeeling, checking on them in the
night to make sure they'rebreathing, making sure that they
look okay.
You don't sleep normally whenyou have a child with medical
challenges.
Obviously, for me it was asister.
We did share a room for manyyears so I knew I was up with
(18:46):
her sometimes in the night andfor sure you know I was up with
her sometimes in the night andum for sure you you definitely
worry.
Wow, we were very, very closeand, um, I I knew when she slept
, well, obviously, and I knewwhen she had her issues.
You would check on her and youwould make sure she's okay.
Obviously, my mother was up alot with her in the night taking
(19:07):
care of her make sure she'sokay.
Speaker 2 (19:09):
Obviously, my mother was up a lot with her in the
night taking care of her Right,right, I'm sure.
Wow, wow.
So so did you ever share yourexperience or gain support from
other siblings that lostsiblings, or have you felt that
it's just so different, like aspecial need?
Sibling is different becausethe connection is so much deeper
(19:29):
, stronger, different.
Fill in the blank.
Speaker 3 (19:32):
Right.
I mean everyone knew, like allmy friends knew my sister,
everybody, my relatives,everybody felt very close with
her.
She always had a huge smile,she made everyone feel
comfortable and when she passedaway, everybody you know
everybody was there for me.
Through my life I'm saying Ihad a very good support system
with my family, my relatives, myfriends.
(19:54):
After she passed away it wasthe same thing.
Everybody that was there for me, my close group, my colleagues
too at work, were there for me.
Everybody was checking in andcalling me, you know, coming to
the city, because I only broughtso much things with me to be
there.
I didn't know how long I wasgoing to have to be in the city
when she got very sick and theywould just like tell me what do
(20:16):
you need?
And I'm in your room, can Ibring you something?
Can I bring you something toeat?
What do you need?
You know they would come andjust spend a little bit of time
with me in the city just to getme out of the hospital a little
bit, just like a little bit ofnormalcy, to be with friends and
go out, you know, to getsomething to eat.
And you know that was very,very helpful, I would say, as
far as other people that lostspecial needs I only met when I
(20:42):
went to the May Room weekend wewent upstate to.
It was in Camp Simple Special,which felt very special to be
there because that's where mysister spends a lot of her
summers.
And I went with my parents andwe had a group of girls that
lost their siblings and everyonewas talking about their
(21:03):
experiences.
Speaker 2 (21:05):
That was probably the first time I You're saying that
you felt special to be in CampSimcha, special because that's
where she.
Speaker 3 (21:14):
Right, that's where she spent many of her summers in
Camp Simcha Special.
That's where the Mayrim weekendwas and we were there.
I was there together with myparents and there was a special
group for, like a support groupfor siblings that lost their you
know, they lost their sister orbrother to special needs or
(21:35):
different, different reasons,different losses, but they all
lost a sibling.
And that was probably the firsttime that I was sitting in a
group with other siblings andtalking about their experiences.
And one of the things that thetherapist spoke about, she
actually introduced a book.
It was called Tear Soup, and Ifound one of the pages to be
(21:57):
very accurate to the way I wasfeeling and it was about how
everybody's life is going aboutnormally.
But you don't feel that way, youknow.
You feel like everythingstopped and even while she was
sick and she was in the hospitaland was shopping back and forth
, everybody was getting ready,you know, for Yonsei, for the
school year, and for me, I wasbusy taking care of my sister
(22:18):
and then, when she passed away,I was busy with, you know,
getting ready for the Leviah anddealing with the Shiva and
everything else.
But life just keeps going onfor everyone else, which is
normal, that's the normalroutine, but for you you feel
like you're you're stuck in thisgrief, you know, and so
everyone was talking about aboutthat as well, and that felt
very.
It just felt like I it wasunderstood.
(22:41):
And since then I'm saying andsince then I know people that
have lost a sister or a parentand we have connected that way.
I've had friends, unfortunately,that have lost family members
and we could connect and theycould ask me things and I can
(23:03):
ask them things and we couldunderstand each other that way.
I mean, I had a friend fromschool that we reconnected with,
that I reconnected with, andshe had lost her sister and so
it was very special to talk toher because she really
understood what I was goingthrough.
Her sister also was in a coma,so it was someone that I can
call and ask her questions andshe really she got me.
(23:23):
So I was lucky to have to havesupport.
Speaker 2 (23:30):
So you're saying, even if it's someone that lost a
sibling, that wasn't specialneeds, you still feel like you
could really connect to eachother.
Speaker 3 (23:35):
Right, because there's a special bond that you
have with a sister or brotherthat is different than a parent
losing a parent.
So it feels like you can relate.
But of course somebody thatlost the special needs is
definitely very different.
You know they have the siblingchat also Miriam has and so
(23:56):
people post on the chat,oftentimes talking about their
stories, and sometimes there'ssomeone with special needs.
I mean, I knew some people thathad the same illness as my
sister, that also lost theirsister, and so we were in touch
also that way.
But you could still relate.
You know loss is loss.
Obviously it's different foreverybody and everyone's
(24:18):
experience is so unique, even ifit's special needs.
Everyone has a differentrelationship and different
challenges that have gone onover the years.
But you could still understandwhat it's like to lose someone
that you love so, so much, andthat deep, deep connection and
bond is probably different forspecial needs because you felt
so protective of them and youworried so much about them and
(24:40):
your life was so much about themthat losing them is like losing
such a huge piece of you andthere's such a quietness in the
house when they're not there,you know, and it was like your
whole life was, you know, busywith them and my parents are
busy with them, and all of asudden it stopped and you feel
very, it's very lonely feeling,it's very quiet and it's painful
(25:04):
.
Speaker 2 (25:06):
So did you feel the responsibility to also support
your parents.
Speaker 3 (25:13):
Sure, I did, we were.
You know we're a small family.
I became the only child and Iwanted very much to be with my
family.
That was very important to me.
And for us to just talk abouther, look at pictures and just
remember, you know, differentfun memories and we would just,
(25:35):
you know, schmooze on Travisabout her and that was very
important to me.
And also I felt that my sisterwould not have wanted us to be
depressed.
You know she would have wantedus to go and do fun things.
You know, after the solutionwas over, we, we did fun
activities together as a family.
We went bike riding togetherand we did go and travel to, you
(25:58):
know, florida for PATHOS thatyear.
It just felt like, oh my gosh,how are we going to celebrate
Yontif without her?
Like she just loved Yontif andwe're like it's going to be so
strange to be at the table andshe's not going to be there.
And then we, just anopportunity came up for us to go
away for Yontif and I thinkthat was a very good thing for
us to do.
Change of scenery, differentexperiences, building different
memories.
(26:18):
But of course it, um, itchanged, it changed us.
You know we, we had to.
You know, deal with the lossand it was very, very painful.
Speaker 2 (26:33):
So you mentioned a lot about her midah of Simcha
and her smile.
Everyone loved her smile, soI'm wondering if you did
anything to like perpetuate that, that midah that she had.
Speaker 3 (26:45):
I did.
I made these magnets for her,shloshim, that I gave out to all
our friends and family, thatsaid, and there was a picture of
her in the middle on amerry-go-round.
She loved droids.
So I just found the picture ofher with a beautiful smile and
then I wrote and I gave it outto everybody.
(27:06):
And people tell me all the timeI look at her picture on the
fridge and it just makes mesmile.
I remember her.
And they would tell me sharewith me a memory.
Or they would tell their kids,who maybe some of them never met
my sister, and they would sayhow could you complain.
Look at Hani, look at how she'ssmiling.
Nothing got her upset, you know.
She always managed to smile andshe sometimes wasn't feeling
(27:28):
well, but look at how, how shesmiles and, and that gave me a
lot of um, to know that what Idid to, you know, help um, for
her memory, for her neshama, is,you know, influencing others
and, and obviously for me aswell, and for our family, that
gives us a lot of nechama.
(27:48):
I would say that she also hadjust the joy of being a Jewish
person.
You know that she loved beingfrom and celebrating the Yom
Tovim and I found that, oh mygosh, how am I going to
celebrate Hanukkah without her?
You know Purim.
And so Hanukkah I did that wasthe first Yom Tziv after she
(28:11):
passed away.
She passed away in Cheshvan andso Hanukkah came about.
I did like toys I donated inher memory.
She loved getting gifts, likewe used to do, you know, like
open up a different presentevery night of Hanukkah, and she
used to be so excited to seewhat she got.
And then I did that in hermemory.
And then for Purim that yearthat she passed it was on a
(28:33):
Friday I felt like, how am Igoing to do Purim together.
We used to do themes together,we used to dress up together a
lot of times and I had a poemand we would go ahead and buy
the you know the food for theShalach Manos and all the
different things that we putinside, and we would get
together and put them and makethem, make the Shalach Manos
together.
And it was like weeks ofpreparation and excitement and I
(28:55):
was like how am I going to doit this year?
And I wasn't sure what to doand about.
I would say about two weeks,maybe even less before Purim, I
received an email that mychocolate order has been
fulfilled.
And I was on my lunch break atwork when I got this email and I
was so confused Like I didn'torder anything.
(29:17):
I was like maybe someoneordered something for my
birthday, but like I didn't, mybirthday is around the same time
as Purim, you know, a little,maybe a week or so after Purim
that year, and it just hit melike this is my sister sending
me a message and I'm like I justgot so like such heebie-jeebies
, you know, I was like I reallyfelt that it was her sending me
a message and I looked into itand it was chocolate that I
(29:40):
ordered for Shalach Manos a fewyears before for a theme that we
did together, but they didn'thave it in stock.
It was out of stock and so theorder got canceled.
And suddenly orders were filled.
So I called the company and Isaid I got this email that my
orders were filled and they'relike yeah, there was like some
type of fluke in our computersystem.
There was a glitch.
(30:01):
I'm like no, no, no, I was likelet me talk to the manager.
There was no glitch.
And I told him the story.
I said my sister loved Purimand I really didn't know how I
was going to celebrate this year.
But this gave me a lot ofinspiration and I'm actually
thinking about doing somethingin her memory to tie in the
Shalach Manas to her memory.
(30:22):
And I really would love if youhad the chocolates that they
were like a crown shape and theyhad like pink foil and I was
going to do something with her.
She was her favorite color waspink and I love purple.
So we have pink and purple andlike oh my gosh, wow, this is
amazing, we're going to send yousomething.
And like, by the way, it's paidfor.
(30:43):
I'm like what?
Like I paid for it.
It was just all like so wild soit was paid for and they're
like you don't have to pay usanything, we're going to send it
out next day shipping.
Cause, like perm was likecoming up already it was almost
there and like we're going tosend it out next day shipping.
And I got it.
And I made these t-shirts thatsaid be the reason someone
smiles today and I had our nameswritten on the shirt.
(31:05):
I did pink and purple wig andtutu and socks and cool sneakers
.
I mean we always did somethingfun.
And she told me, like you arenot.
That was her message.
You are not going to let thisperm go by.
You're going to continue doingfun things without me and you're
going to make sure that messageis there.
And I used her about her smilein it and I actually went to
(31:28):
shul in my costume.
We always did, we always woulddress up for shul, for Megillah,
and someone came over to me andsaid can I take a picture of
you in your costume?
I want to send it to somebody.
I said, oh yeah, sure you know.
And she said I want to send toShamia Dar.
(31:49):
I knew Shamia Dar from Instagram.
She's a Basmala, entertainer,motivator, and she told me that
she had surgery and she wasn'table to like she was on crutches
, she wasn't able to walk, shehad and she wanted me to.
She wanted to send the pictureto her to give her a little
chesed, because she felt that Iwas really dressed up as her,
because that is her thing Be thereason someone's small, she
wears tutus and cool sneakersand cool socks and that's how
(32:12):
she dresses to her bas mitzvahs.
And I said sure, and she postedon Instagram and I got tons of
likes and I just felt like thisis my sister, like she's again
sharing her message about semchabe'er smiling, about not
letting life, you know, get youdown when things are tough and
you just keep smiling and keepbeing happy and joyful and
that's what you wanted.
(32:33):
And I was like wow, like itjust couldn't be more clear that
my sister's message of it wasthere, it was happening, it was
Purim and it was so appropriate.
I just it really brought me alot of joy to see that and
everyone loved the costume andand it just all came together
and I felt that she sent me thatmessage that was so clear to me
(32:55):
that it was from her.
Speaker 2 (32:56):
Wow, that's really really nice.
Speaker 3 (32:59):
It was a great story.
Speaker 2 (33:05):
And how much after she was lifted did you get
married it really is and howmuch after she?
Speaker 3 (33:08):
was lifted, did you get married?
So about two years after mysister passed away, I met my
husband and it was after manyyears of dating and I dated a
lot.
You know, I really mostly I wasset up by shadchanim friends,
family members, and we actuallymet at a Shabbos meal and it was
(33:31):
so natural and we got to knoweach other and we started dating
and a few months later we gotmarried and it was just, it was
just really special, I mean howour story was just so casual and
um, easy, you know, compared tothe years of dating.
And I will say that after mysister passed away I did get a
(33:52):
lot more suggestions, you know,because dating is definitely
challenging.
That's another story, but itwas.
I mean I dated for many years.
I was single for like 15 yearsand my sister wanted me to get
married so much.
I mean she met a lot of theguys I went out with.
She was always asking me mydates and she wanted to hear
(34:12):
about it and you know she justreally wanted to get married.
She was so excited for me tofind somebody.
And I just felt that my sisterworked this out.
I mean she made like, withGod's help, she was working up
there, she was knocking on thedoors and she was like I'm going
to get my sister married andshe really helped find him
because he is somebody.
(34:34):
My husband, gershi, is someonethat she would have absolutely
adored.
His sense of humor, she lovedpeople that were funny and made
jokes, and he also took care ofspecial needs kids for many
years, so he would not have beenafraid by any of her.
You know medical challenges andyou know she would have
absolutely loved him and I justfelt that my sister was again in
(34:58):
my life and guiding me fromabove and she helped me find my
husband after such a long timeof dating and things.
Barak Hashem went very smoothlyand I was very, very thankful
for that.
Of course, we missed her beingphysically with us for the
wedding.
She would have loved it gettingdressed up, getting her hair
(35:20):
done, getting to be witheveryone, dance and be part of
the party.
She always loved a good partyand so she would have definitely
had a blast at my wedding.
It was a lot of fun.
Everybody was just full of joyand laughing and dancing and it
was we had.
We had a great, great time andof course I, as I was walking
(35:42):
down the chuppah, I thoughtabout her.
You know that she's there.
We went to the kevar beforebefore I got married, and we
invited her to the wedding and Iknew that her neshama was there
with us.
Did you feel?
Did you feel?
Did you feel her neshama or notreally?
Speaker 2 (35:57):
Did you feel her?
What Did you feel her?
Neshama or not?
Speaker 3 (35:59):
really I felt that she was there.
I felt that she was with us and, of course, I wish she was
there.
You know that's part of thegrief.
That's very challenging that,and a lot of people that I know
that I spoke to over time toldme the same thing that you know
you just wish they could bethere and the pictures and the
videos.
(36:19):
And you look back at thepictures and the videos and
they're not there and you justwish that they were with you,
especially for these hugeoccasions in life.
Obviously, I never thought thatmy sister wasn't going to be at
my wedding.
I always thought she would.
You know she would be there.
She would love to see me getmarried and have children and be
a part of my life.
You know you just try not tothink about those things.
(36:41):
You know you try to be positiveand hope that they that I was
hoping my sister would live avery long life.
So I definitely felt her, youknow, with us during the Simcha.
But we miss her tremendouslyand you know she yeah, she would
(37:03):
have been so happy for me tosee me get married.
It would have been such a joyfor her.
Speaker 2 (37:08):
Wow, wow.
And what about when you hadyour baby?
Speaker 3 (37:13):
So about nine months ago I had a beautiful baby girl
and I also thought about mysister.
When I found out I was pregnantI said, oh, I wish I can call
my sister you know and tell her.
I just look, you know, sometimesyou just have conversations
with there's a conversation withmy sister, sometimes Like, oh,
honey, you know, I wish I couldtell you that I'm sure you know,
(37:34):
like I'm sure you're watchingover me and you know already
that I'm having a baby, or I'dwrite, sometimes letters to her,
you know, and express to herwhat's been going on in my life
and tell her about it.
And so we actually found outthat we were having a girl and
it was almost like not even adiscussion.
(37:54):
We knew we were going to nameher after my sister and I
thought about it like that'sgoing to be bittersweet, you
know, because that was mysister's name.
At the same time, like wow,what is this to have my sister's
name?
You know how special that is tocarry on her name.
(38:16):
So we named our daughterYochava and Chana.
Yochava was after mygrandmother was really close
with and my sister was also veryclose with my grandmother.
And then Chana was my sisterand we call her Chani.
It's like my sister's name.
And she just yeah, she wouldhave loved the baby.
She would have loved playingwith her, facetiming with her,
(38:40):
going out on trips, doingactivities.
She would have actually lovedto be the aunt.
You know fun and do activitieswith her and projects and you
know she would come for Shabbos.
She would have loved it.
She would have absolutely lovedit.
Speaker 2 (38:55):
Wow, wow, and your parents could call her Hani
honey.
Like it's comforting for themyeah.
Speaker 3 (39:03):
So I um, I remember having a conversation with my
parents when I was pregnant,because I didn't tell them what
we were having.
But I said like, just you knowif it's a boy or if it's a girl,
but if it is a girl, would yoube, you know, comfortable
because I want, it was importantfor me to make sure that it was
okay with them to call her Hani.
And right away their responsewas of course, we would love
(39:25):
that.
It would be so exciting for usto have her name in the family
and really keep her memory aliveand really what a schuss it was
.
And I remember she actually wasborn a couple weeks early and
my sister's yard site was aboutlike a little over a week after
(39:47):
I had the baby.
So it just felt like it was allnot a coincidence that I had
the baby early and we named herin shul and I was there and it
was just such an emotionalexperience for me to have my
baby named after my sister andyou know everybody was emotional
and crying and we were just, uh, excited.
(40:08):
And you know, when everyonepeople asked me oh, what's her
name?
I mean a lot of people wereexpecting it.
They were like, okay, when isit official?
You know, when is she beingnamed?
And after shabbos, right away,everyone said, please text me
the name right away.
Um, so a lot of people expected.
And then, when people asked mewhat's her name, oh right, fanny
.
And like wow, how special thatis that you named her after your
sister.
(40:28):
And I said, of course, like Iwouldn't have done it another
way, right, so I did have timeto prepare for it while I was
pregnant because I knew what Iwas having.
So I had time to like thinkabout, like, what's going to be
like to call my baby by mysister's name.
And you know, I got used to it,the idea of it, and so it's,
you know, my sister Hani, andnow it's my daughter Hani, and
(40:50):
it's very special for her tohave her name.
And I, you know I'm going totalk.
I already show her likepictures on the fridge of her.
You know I'm going to talk.
I, you know, I already show herlike pictures on the fridge of
her, you know, smiling, and I, Iwill talk about her and she's
going to know who she's namedafter, you know, and what a
special privilege it is to haveher name.
Speaker 2 (41:11):
Wow.
Speaker 3 (41:11):
That is so nice.
That's really really beautiful.
And you know me and my sister,we were very close, we did a lot
of fun things together and,like I said, she was just a very
happy person.
She loved adventure.
She loved going on rollercoasters.
I mean you think that with herillness that she wouldn't be
able to go on a roller coaster.
And I remember the first timewe were on a kid's car trip and
(41:33):
I asked the doctor, like did yougo on a roller coaster?
And like, yay, look whathappened.
She, like, did she go on aroller coaster?
I'm like, yay, what couldhappen?
She might get a little nauseousafter, like you know, you see
all the warning signs by theroller coasters, like you can't
go on with this issue, thatissue.
She had so many of those issuesand they said, yeah, she can go
on and she loved it.
She loved the drop.
I mean, I was afraid for her.
(41:54):
She didn't want to hold on, shejust loved excitement.
She loved animals.
She wasn't afraid of any animal.
She especially loved dogs andbirds and rabbits.
But she had a love for life andpeople and just doing things.
She always wanted to go places.
What are we doing today?
Where are we going?
She loved shopping and everytime I went on a trip, she asked
(42:17):
me oh, bring me back a souvenir, and she would give me a list
of things that she wanted me toget.
And she kept up with everything.
She knew what was going onInstagram.
She knew what was going on thelatest cookbook was coming out.
She would tell me, oh, you haveto get it.
And she would take screenshotsof things that she wanted.
She was very with it, she knewwhat was going on and she was
(42:38):
very fun to be around on and shewas very fun to be around.
Speaker 2 (42:44):
Wow, that's amazing.
Yeah, I mean, you're reallydescribing someone that had a
real real capacity to reallylove.
Speaker 3 (42:52):
It sounds so special and beautiful.
Yeah, we really loved eachother tremendously.
I mean, people would tell me, Isee the way your sister looks
at you, I see the way you lookat each other, that's a really
special bond.
People would tell me, like, Isee the way your sister looks at
you, I see the way you look ateach other, that's like a really
special bond.
Like people would tell us, youknow, when it came to the Shiva,
oh my gosh, the way you andyour sister got along, the way
that you hung out together andthe way that you took care of
your sister, they were just soimpressed.
(43:14):
I mean, for me it was secondnature, of course, you know, and
I would run to the hospital,you know, after work, when she
was sick in the hospital, andpeople would say, oh, you don't
have to go every day.
You know, take a break.
I'm like my sister is not goingto happen, like those things
are a break.
When are you coming, devorah?
Like I would finish work.
She knew what time I finishedwork.
(43:38):
She would ask me you know, whenare you coming?
What are you bringing?
You know, what are we going todo today?
Um, especially when there wasno school, during COVID.
You know I would come up withactivities.
We would do baking together, um, any type of, you know, art
activity she loved and just lookforward to it.
And it was yeah, it was, ofcourse I'm doing this for my
sister.
All the time I was alwaysthinking about her and what I
(44:01):
could do to make her have funand happiness and do activities
with her.
We were always, you know yeah, Imean she she had her life.
She went to her day habit.
You know, as an adult, she wentto a program during the day,
but on the weekends, you know, Iwould always do something with
her.
You know we always spend timetogether and obviously she knew
(44:22):
I had my personal life and myfriends and dates and all of
that.
And she would send me voicenotes.
She would FaceTime me and callme what are you doing now?
Where are you going?
You know she was like veryinterested in everything that I
was doing and she loved hearingabout it.
She would send me a voice note.
I remember, after she passedaway, like I was like it was
such a strange feeling, likethere's no FaceTime, there's no
(44:44):
phone calls.
You know she always called meon like Facebook Messenger.
So it was like a different ringwhen she called me and I was
like it was very strange not toget calls from her and I missed
it.
I was like when is she callingyou?
Know you like, know you like,kind of like when's the?
phone call.
Yeah, when's the phone callhappening?
That was very, very hard.
Yeah, it's very, it's verychallenging to lose someone that
(45:08):
you, you love.
It was for sure the hardestthing that I had to go through
and, like I tell people that youknow, lost a family member.
It's grief is not linear.
It's not like you know there'sa process and you go through the
beginning, the middle and theend and that's it.
It has its ups and downs.
You know it has its times thatyou feel like you're okay and
(45:28):
you're living life and you'redoing everything you're supposed
to be doing.
And then there are times that ithits you a yartse, a simcha you
know birthdays, yontif andyou're missing that person so
much.
Or a picture, a memory comes upon your phone, or you meet
somebody that knew your siblingand you just the memories come
(45:49):
flushing, flooding back and youjust wish that they were with
you.
You have a dream about them.
You know they, they about them.
They're always going to be partof your life, even if they're
(46:11):
not physically with you.
I would say that the biggestthing that helped me right after
she passed away was going backto routine, going back to work,
doing my everyday routine.
I would say that's the bestadvice I can give somebody is to
try to get back and do thethings that you normally do,
that you love, and it will helpyou feel a sense of normalcy
under the crazy circumstances oflosing someone that you loved.
(46:35):
And then you know, over timethere's going to be times that
are going to be very sad andpainful and you need to put
aside time for that.
The feel the sad, the feel thepain.
It's not going to be forever.
That raw, raw pain that youhave right after the person you
love passed away is going to geteasier.
(46:57):
It's not going to be thatyou're not going to be crying
all the time the same way thatyou do when they first pass away
.
It will get easier, but it's.
You know there's going to bethings in life that are going to
happen that you're going to say, oh my gosh, I wish they were
here, I wish I could call them,I wish I could spend time with
them, and, especially forsomeone that has a sister or
(47:18):
brother with special needs, Iwould just say, like, spend as
much time as you can with them,take a lot of pictures, videos.
I mean that really helped me alot, me personally.
Looking back at the picturesand videos and the voice notes
that we shared together, hearingher voice, seeing her face and
the things that we did and thefun memories I could think about
.
Okay, you know, we had 28amazing years together.
(47:40):
I was lucky and thankful tohave that and just cherish the
time you have.
You know, every day is really agift and just enjoy all the
memories that you have with themand that's, you know.
That's.
That's the biggest Nekhama forme is that I know that I was
dedicated to her.
I loved her tremendously.
She knew how much I cared forher and how much time I
(48:03):
dedicated to her, as much as Icould.
And that's the biggest comfortfor me is that I know I did so
much for her and I loved doingit.
You know, and, like my family,we always say we would have done
it for another bunch of years,you know, but we're thankful
(48:24):
that we had her for this amountof time.
Hashem gave us a true gift andwe all just grew and learned so
much from her and we still doabout her.
And and you keep the memory.
That's how you keep their themalive in your, in your life, by
talking about them and thememories and the you know the
the fun that we had.
(48:46):
Um, I think that we as a familylove hearing from people stories
of memories.
I remember when we were sayingShabbat, like my mother would
say to people what was yourmemory of Hani?
And then they would go on totell us a story and something
that they would remember.
And even now, if I go out witha friend and someone that I
didn't see for a while and shewas telling me oh, I remember
(49:08):
your sister and I remember thatI used to call back in the day
before we had smartphones, Iused to call your house phone
and your sister would answer thephone.
She was like the home secretaryand like she started talking
about it and I remembered it andshe would talk to me on the
phone for 20 minutes before sheeven gave me the phone.
I was like, hey, but now it wasgreat talking to you, Now I can
(49:31):
speak to Devorah.
You know that she would giveher the phone.
So you know, this just happenedthis past summer where I just
spoke to a friend and she wastelling me the story.
So it's so nice to hear, Ithink for people that went
through loss, so nice to hearthe stories still now.
You know it's almost five yearssince she passed away and you
just want to keep hearing aboutthem.
You want to still talk aboutthem, and you know that's very
(49:54):
important to me.
Speaker 2 (49:57):
Wow.
Well, thank you so so much.
I think that's such a beautifulparting message.
Like you know, the theremembering that grief isn't
linear, the people knowing thatyou know those that are grieving
love hearing memories.
They don't have to be scared ofsharing memories and, yeah,
that was such a like niceparting message.
So, thank you so so much forcoming on.
Speaker 3 (50:17):
Thank you so much for having me.
It was really a pleasuregetting a chance to talk about
my sister, hani, and you know.
If there's any questions oranything that comes up, you know
, feel free to.
You know, share with me and I'mhappy to help.
Anybody that you know wants totalk to somebody, wants support,
you know, or has needs advice,I'm happy to help in any way
(50:39):
that I can.
Speaker 2 (50:41):
Amazing.
Okay, so if there's anylisteners that want to reach out
to DeRora, you could reach outto me and I will put you in
touch.
Thank you so, so much, thankyou so much.
Speaker 1 (50:53):
You've just listened to an episode of the Grief
Journey Podcast with MiriamRibiat, brought to you by Mayrim
.
For more episodes, visit theMayrim website at wwwmayrimorg.
Help us reach more people whomight benefit from this podcast.
If you know someone who couldfind it helpful, please share it
with them.
If you have questions orcomments for the speaker, or if
(51:16):
you'd like to suggest a guestfor the podcast, we'd love to
hear from you.
Email us at relieffromgrief atmayrimorg.
We look forward to having youjoin us in the next episode.
Welcome to the Grief Journey Podcast hosted by Mrs
Miriam Ribiat and brought to youby Merim.
Merim is an organizationdedicated to supporting families
who have experienced the lossof a child.
It was founded by Eloi Nishmas,nechama Liba and Miriam Holman.
Despite her illness, miriamdevoted herself to addressing
(00:23):
the needs of parents andsiblings grappling with the
immense pain of losing a child.
She felt this loss deeply,having experienced it firsthand
when her older sister, nahamaLiba, passed away.
Merim continues to uplift andexpand on the work Miriam began,
a mission carried forward byher parents with great
dedication.
Again, a mission carriedforward by her parents with
(00:44):
great dedication.
If you have any questions orcomments for the speaker, or if
you'd like to suggest a guestfor the podcast, please email us
at relieffromgrief at mayrimorg.
Speaker 2 (00:59):
Hi everybody, thank you so much for joining me here
today on the Grieving Podcast.
So today I'm very, very excitedbecause today we have Devorah
Rosenfeld, and Devorah Rosenfeldhas a very interesting story
that I am sure will be much likemany, many people.
So, devorah, thank you so somuch for coming on.
Speaker 3 (01:19):
Thank you so much for having me on.
Speaker 2 (01:22):
Okay, so why don't we jump right into it and why
don't you start off with tellingus a little bit about what
happened when you were fiveyears old?
Speaker 3 (01:31):
So when I was five years old, I was really excited
to have a new baby sister and Iwas going to be the big sister
and I just couldn't wait to meether.
I was so excited anticipatingmy mother giving birth, and when
she was born March 28th 1992,we were five years apart it was
(01:53):
so exciting for us and I justcouldn't wait to meet her.
Of course I didn't get to meether right away because she was
born with special needs and shedidn't come home right away from
the hospital.
There were complications and ittook a few weeks, but for me I
didn't have anything to compareit to, so I didn't know that was
not a normal thing for a babynot to come home right away.
And so when she did come home Iwas so excited to meet her and
(02:15):
I didn't really realize thatthings were going to be so
different right away.
But we did have a lot of nursesin the house helping.
Speaker 2 (02:27):
You know the different shifts taking care of
her, so you didn't realize thatthis wasn't typical for a
newborn baby.
This is just what you knew.
The baby comes home and peopleare in and out of the house.
Speaker 3 (02:37):
Right, and I thought that that was a normal thing,
because she's a new baby and sheneeds a lot of care and I'm
five, so my mind, this is whatis supposed to happen.
Speaker 2 (02:47):
Right, right, wow.
So when did you realize thatone second?
She isn't the same like otherbabies or like other sisters.
Speaker 3 (02:57):
Right.
So a few years, I would say,into my elementary school.
You know I would see that otherkids are going to, other
siblings are going to school anddeveloping differently.
And she was home a lot.
She was sick often.
She had to go to a lot ofdoctors.
She had many therapists come tothe house speech, pt, OT, you
(03:21):
know, feeding therapy, and myparents tried having her learn
to eat by mouth and she just hada lot of trouble with it.
Food was aspirating a lot intothe lungs and she eventually
needed a tube, feeding tube, putin.
So I did see that that wasdifferent.
There was a lot of machines.
She had to be hospitalizedoften.
(03:42):
She got sick a lot.
So I started to see things weredifferent and I would talk to
my friends a lot about her, myteachers.
I would write about her a lotin school and creative writing.
I would write about myexperiences with my sister and
what it was like for her to goto the doctor and then at the
doctor's office needing to hearthat she may need to be
hospitalized.
Things got, you know, worse inher illness what she was dealing
(04:05):
with.
So I definitely started to seeit when I was, you know, I would
say in elementary school, a fewyears later wow, did you keep
those writings that you have?
yeah, so it happens to be theschool after I graduated
elementary school.
They save some of your writingsthrough.
I guess from every teacher theyask some of your writings.
I guess from every teacher theyask the teachers to give you
(04:27):
one piece of writing that youdid that was really good and
they saved it in a portfolio forus.
Speaker 2 (04:34):
So when I graduated I have one of the writings that I
did about her and it wasinteresting, like years later,
(04:56):
to look back and see from thatperspective, as a second or
third greeter, what I had to sayabout her and the perspective
of what I saw of having a sisterwith special needs at that age.
Speaker 3 (05:01):
Do you remember that you had those perspectives or it
was like really like newinformation for you?
I did remember it but it wasstill like so funny to read it
and I really wrote about it andlike such a play-by-play, you
know, just saying we had to goto this doctor and I say
specifically her name and whathappened at the doctor's office,
like every single thing thatthe doctor did to evaluate her,
and you know who my parents hadto call, and you know my parents
(05:22):
had to call and you know allthose kind of things that were
going on.
I really was absorbing it.
I was very aware that there wassomething different and I went
with my parents a lot, with mysisters, for different
appointments Not always, butsometimes I did.
And so you know I kept hercompany and made her happy, I
(05:47):
distracted her, played with her.
Speaker 2 (05:49):
So I knew um, I definitely knew that she was she
, she had an illness wow, and Iguess instinctively you knew
that it was sort of your job toplay with her and make her happy
and like sort of take care ofher.
Speaker 3 (06:02):
I did without anyone saying I.
I did do it on my own, but Iloved it.
I just loved being the bigsister, I loved playing with her
and I just enjoyed it so, somuch.
Speaker 2 (06:15):
Was there like an overprotective feeling that you
had?
Speaker 3 (06:18):
For sure.
Definitely I would go in thestreet with her.
You know she had a specialstroller and you know there
would be other kids that wouldmaybe stare at her, look at her
differently.
And as she got older and shewas able to speak more, she
would stick up for herself andshe would say don't stare at me.
But when she was younger shedidn't always say things and I
(06:41):
would speak up for her.
I didn't want anyone to makefun of her and I didn't want
people to look at herdifferently and it was.
You know I felt that that was myjob as a big sister to protect
her and especially when she wassick, I would spend time with
her, I would do fun activitieswith her.
I would take her on trips, Iwould, when she was sick in the
(07:03):
hospital, I would go visit herall the time constantly.
You know she would look forwardto me coming to the hospital
and she would ask my parentswhen's Vora coming, when's Vora
coming?
So she always looked forward tothat and and the toys that
would bring her and theactivities and the projects.
She would, you know, love doingthat with me.
You know, when she was sick inthe hospital wow, so does that?
Speaker 2 (07:28):
do you see that that plays into your life today,
where you have a certainoverprotectiveness of people or
are very strong like um trait,that you have to stick up for
people that you feel like arebeing missed, you know, not
handled, mistreated or whatever?
Speaker 3 (07:44):
So I definitely think I do and I think I have also an
empathetic part of me that camefrom having a sister with
special needs that I look outfor people that are maybe
misunderstood or need extrapatience or understanding of
their situation.
Especially as a teacher, Ireally tap into that because I
(08:05):
teach children with all kinds ofabilities and some of them have
learning differences and Ithink that growing up with the
sisters with special needs gaveme that perspective of wait.
This child may need somethingdifferent.
This person may need adifferent understanding, a
different level of patience, andI think that helped me
tremendously in life and alsojust really having understanding
(08:29):
for, for people in general.
That really helped me a lot.
Speaker 2 (08:39):
So one second.
So she was, she was, so she wasable to do projects and play
with toys.
So what does that mean?
That like mentally she wasmostly okay and even like her OT
skills were okay.
Speaker 3 (08:52):
So she definitely had a lot of early intervention.
Um, when she was a child andshe had therapy throughout her
whole life, you know as a childin school, I would say that she
definitely picked up some skills.
She learned how to write I meannot so clearly, but her
handwriting was pretty decent.
She definitely enjoyed usingthings with her hands.
(09:13):
Fine motor skills were actuallypretty good.
She would do like those beads,the perler beads, and she would
love to color, color by number,like seeing things that are very
small, that I would even likeget frustrated.
She wouldn't.
She loved it.
She would have a lot of pain,things, those kinds of things
she was.
Her illness affected herphysical health a lot.
(09:35):
She had a lot of issues withbreathing, feeding her blood
pressure.
She was on a lot of medicationto regulate her blood pressure.
So every morning she would wakeup nauseous and she wouldn't
feel well every single day.
But you wouldn't know it, shealways had a big smile on her
face.
You know, in spite of hermedical challenges, she smiled
(09:59):
and she was, she had joy abouther.
I mean, everybody who you ask,tell me about your sister Hani,
they would say, oh, her smile.
She just lit up the room.
It was just contagious and yeah, so it did affect her medically
and emotionally.
I think she really understoodpeople.
She understood life.
I could talk to her about mydating.
(10:22):
She would ask me questionsabout who you're going out with.
Did you go on a date last night?
But she learning she had a lotof learning issues.
You know she was definitelyvery delayed.
She wasn't on her level.
You know she was 28 when shepassed away, but she was not on
(10:45):
academically, her reading leveland her writing and all that was
definitely buried the lead.
Speaker 2 (10:48):
So what about her?
Like she understood what wasgoing on, she never wanted to
know why she's not going awaywith friends or why she's not
getting married, or like shedidn't wonder why she's
different.
Speaker 3 (10:59):
So she didn't ask much about.
She never asked about gettingmarried, about doing things.
She went to camp.
That was her greatest fun.
She looked forward to it.
She went to Camp SimpsonSpecial for a couple of summers
and she absolutely lookedforward to it.
So she knew, like I went tosleepaway camp, she went to
sleepaway camp.
She didn't really ask about, Imean, friends-wise wise.
(11:24):
She had, you know, some friendsin school.
They were different than her,but she, this is what she was
used to.
She was used to being with alltypes of kids in school, so she
didn't really ask us about that.
Speaker 2 (11:40):
Wow, so what happened when she was nifted?
It was suddenly or she was sick.
Speaker 3 (11:42):
Wow, so what happened when she was?
Speaker 2 (11:43):
nifted.
It was suddenly or she was sick.
Speaker 3 (11:45):
So she was born with a genetic illness and she was um
.
She was sick her whole life,you know she was.
She definitely um, had a lot ofmedical challenges and it was
her.
Genetic illness could affecteveryone differently.
It's like a span.
You know some kids are mildlyaffected, everyone differently.
(12:05):
It's like a span.
You know some kids are mildlyaffected, some very much, and
she definitely was.
She had a bad case of it andshe needed a lot of treatments
and she would always go to thedoctor constantly.
She had a doctor in the citywho she followed very closely
with different medications.
They were always tryingdifferent treatments to help her
to make her life easier, morefunctional, and they were doing
a lot of research, you know, totry to help her to make her life
easier, more functional, andthey were doing a lot of
research, you know, to try tohelp, you know, her have the
(12:28):
best life that she could.
And I would say in the last, youknow she had definitely
different issues that came upwith her illness over time and
we were worried.
I would say as an adult Istarted to worry more about her.
I started to realize,definitely in my teenage years
and my adulthood, how fragileher illness was and how
(12:52):
unpredictable and how she couldhave some type of episode
regarding her lungs and maybeshe wouldn't come out of it.
A very bad pneumonia she's had,where she had trouble breathing
and there were different.
She had seizures, she haddifferent challenges and when I,
(13:13):
I would say, the last year ofher life, she started having a
lot of these fainting episodeswhich we never really saw.
This was something new and shewould faint, but not just like
for a few seconds, and come back.
She would faint for a longperiods of time that it wasn't
stopping.
And it was the year of COVID,so the doctors didn't really
want her to go to the hospitalbecause they were afraid they
(13:34):
didn't want her to get COVID.
And so she was home and we weretrying to figure out what it is
.
They were trying to regulateher medication and they sent us
a video of what she's doing andthen eventually we just had to
take her into the hospitalbecause we had to figure this
out.
And so we took her into thehospital and they were running
tests to see if it was seizures.
It was not, it was ruled out,but she was already on
(13:56):
medication for that and theyjust couldn't figure it out and
they were ready to discharge herand they discharged her right
outside the hospital.
She had another episode andHadsela had to take her right
back in and they just weren'tfiguring it out.
They were just running testsand they just didn't know what
it was causing these episodes tohappen.
(14:16):
And on the second day of RoshHashanah she went into cardiac
arrest and she had to be put onthe respirator and she went into
a coma and it was very, veryhard to see.
I mean, we weren't expecting it, you know.
We were just expecting thedoctors to eventually figure it
out, do something with hermedication.
(14:37):
We were just desperate to seesomething happen, you know, a
change for the better, and wejust weren't seeing that happen.
It was very you felt veryhelpless for her.
You just wanted her to getbetter and while she was in the
hospital she also got pneumonia.
So she was dealing with that ontop of it and a lot of
medication to help her getbetter.
She just looked very, very sickand then she went to cardiac
(15:01):
arrest, she went into a coma andthings.
Her whole body deterioratedvery, very quickly.
She was sick, for she was in acoma for five and a half weeks
um, and it was really the mostpainful thing to watch someone
you love die you know, wow, youwere with her in the hospital
like around the clock yeah, so,yeah, we all were there with her
(15:23):
.
It was so covid, so they werevery careful with allowing
visitors.
Of course she was allowedbecause she had special needs.
She was allowed to have someonewith her.
It was COVID, so they were verycareful with allowing visitors.
Of course she was allowedbecause she had special needs.
She was allowed to have someoneon her bedside all the time.
But, my, you know, we tookturns being with her and we
never left her alone and it wasCOVID.
So I was as a teacher, I wasallowed to work remote, so I
(15:46):
moved myself to the city becauseshe was in NYU hospital and we,
I did, I would see her and thenI would go to, you know, my
Zoom sessions and I would goback and see her.
So that kind of worked for mebecause I was able to be there
so much more really all the time, practically because of that
situation and, um, yeah, it was,it was.
(16:09):
It was very hard to see herlike that it really was, cause
that's not who she was my wholelife and I didn't know her that
way.
You know, I knew her to be sohappy and joyful and then she
was so sick and then, all of asudden, you know you're just
standing by her bedside seeingmaybe she'll wake up, she'll
come out of it, and was justlike everything changed
overnight wow, wow, um, I hear Iheard from you know, a lot of
(16:36):
parents that lost special needschildren, about like almost the,
the, that they, that they, theymaybe didn't even realize that
they were carrying like aconstant burden of fear that
something might happen.
Speaker 2 (16:52):
Like one mother or father I forgot who said to me
like they, they didn't sleepnormally for eight years because
they were always listening tomake sure if their special needs
child needed help.
So they didn't have a normalnight's sleep until the child
you know it was nifter.
They didn't say this in acomplaining way, they were just
stating facts.
But the, the almost like the,the relief of, like oh, I don't
have to be nervous thatsomeone's dying.
(17:12):
Like that, that kind of waslike, wow, like that, that's new
.
Like I don't have this big feararound my neck.
Speaker 3 (17:17):
I'm curious if, as a sibling, I'm, since, since you
were like an adult, if you alsoreally had that same kind of
something, like, you know, justaround you like, oh, she could
die any minute.
I definitely felt it when shegot sick.
You know, something more thanthe regular everyday challenge
that she dealt with and as herillness got worse, in some ways,
(17:40):
you know, you, you realize fromso many different hospital
visits that, oh, it could havehappened.
Then, you know, like threeyears before she passed away, we
were like she was really reallysick, she could have died.
Then, you know, and we, yeah,we had that worry.
You know, we sent her to camp,she went to Kids of Courage, she
went on trips and we didn't go.
You know, a few years I did gowith her, I was her counselor
(18:02):
and I had, you know, counselorsthat also helped me take care of
her.
But there were a few years thatwe sent her with other
counselors and we worried, youknow, when she wasn't home with
us, my mother would worry, myfather would worry.
Yeah, they had that constantfear that something would happen
.
You would end up in thehospital and you, in the back of
your head, you know, didn'tknow if that was going to be the
(18:23):
time that it's going to be theend.
You definitely have thatfeeling, checking on them in the
night to make sure they'rebreathing, making sure that they
look okay.
You don't sleep normally whenyou have a child with medical
challenges.
Obviously, for me it was asister.
We did share a room for manyyears so I knew I was up with
(18:46):
her sometimes in the night andfor sure you know I was up with
her sometimes in the night andum for sure you you definitely
worry.
Wow, we were very, very closeand, um, I I knew when she slept
, well, obviously, and I knewwhen she had her issues.
You would check on her and youwould make sure she's okay.
Obviously, my mother was up alot with her in the night taking
(19:07):
care of her make sure she'sokay.
Speaker 2 (19:09):
Obviously, my mother was up a lot with her in the
night taking care of her Right,right, I'm sure.
Wow, wow.
So so did you ever share yourexperience or gain support from
other siblings that lostsiblings, or have you felt that
it's just so different, like aspecial need?
Sibling is different becausethe connection is so much deeper
(19:29):
, stronger, different.
Fill in the blank.
Speaker 3 (19:32):
Right.
I mean everyone knew, like allmy friends knew my sister,
everybody, my relatives,everybody felt very close with
her.
She always had a huge smile,she made everyone feel
comfortable and when she passedaway, everybody you know
everybody was there for me.
Through my life I'm saying Ihad a very good support system
with my family, my relatives, myfriends.
(19:54):
After she passed away it wasthe same thing.
Everybody that was there for me, my close group, my colleagues
too at work, were there for me.
Everybody was checking in andcalling me, you know, coming to
the city, because I only broughtso much things with me to be
there.
I didn't know how long I wasgoing to have to be in the city
when she got very sick and theywould just like tell me what do
(20:16):
you need?
And I'm in your room, can Ibring you something?
Can I bring you something toeat?
What do you need?
You know they would come andjust spend a little bit of time
with me in the city just to getme out of the hospital a little
bit, just like a little bit ofnormalcy, to be with friends and
go out, you know, to getsomething to eat.
And you know that was very,very helpful, I would say, as
far as other people that lostspecial needs I only met when I
(20:42):
went to the May Room weekend wewent upstate to.
It was in Camp Simple Special,which felt very special to be
there because that's where mysister spends a lot of her
summers.
And I went with my parents andwe had a group of girls that
lost their siblings and everyonewas talking about their
(21:03):
experiences.
Speaker 2 (21:05):
That was probably the first time I You're saying that
you felt special to be in CampSimcha, special because that's
where she.
Speaker 3 (21:14):
Right, that's where she spent many of her summers in
Camp Simcha Special.
That's where the Mayrim weekendwas and we were there.
I was there together with myparents and there was a special
group for, like a support groupfor siblings that lost their you
know, they lost their sister orbrother to special needs or
(21:35):
different, different reasons,different losses, but they all
lost a sibling.
And that was probably the firsttime that I was sitting in a
group with other siblings andtalking about their experiences.
And one of the things that thetherapist spoke about, she
actually introduced a book.
It was called Tear Soup, and Ifound one of the pages to be
(21:57):
very accurate to the way I wasfeeling and it was about how
everybody's life is going aboutnormally.
But you don't feel that way, youknow.
You feel like everythingstopped and even while she was
sick and she was in the hospitaland was shopping back and forth
, everybody was getting ready,you know, for Yonsei, for the
school year, and for me, I wasbusy taking care of my sister
(22:18):
and then, when she passed away,I was busy with, you know,
getting ready for the Leviah anddealing with the Shiva and
everything else.
But life just keeps going onfor everyone else, which is
normal, that's the normalroutine, but for you you feel
like you're you're stuck in thisgrief, you know, and so
everyone was talking about aboutthat as well, and that felt
very.
It just felt like I it wasunderstood.
(22:41):
And since then I'm saying andsince then I know people that
have lost a sister or a parentand we have connected that way.
I've had friends, unfortunately,that have lost family members
and we could connect and theycould ask me things and I can
(23:03):
ask them things and we couldunderstand each other that way.
I mean, I had a friend fromschool that we reconnected with,
that I reconnected with, andshe had lost her sister and so
it was very special to talk toher because she really
understood what I was goingthrough.
Her sister also was in a coma,so it was someone that I can
call and ask her questions andshe really she got me.
(23:23):
So I was lucky to have to havesupport.
Speaker 2 (23:30):
So you're saying, even if it's someone that lost a
sibling, that wasn't specialneeds, you still feel like you
could really connect to eachother.
Speaker 3 (23:35):
Right, because there's a special bond that you
have with a sister or brotherthat is different than a parent
losing a parent.
So it feels like you can relate.
But of course somebody thatlost the special needs is
definitely very different.
You know they have the siblingchat also Miriam has and so
(23:56):
people post on the chat,oftentimes talking about their
stories, and sometimes there'ssomeone with special needs.
I mean, I knew some people thathad the same illness as my
sister, that also lost theirsister, and so we were in touch
also that way.
But you could still relate.
You know loss is loss.
Obviously it's different foreverybody and everyone's
(24:18):
experience is so unique, even ifit's special needs.
Everyone has a differentrelationship and different
challenges that have gone onover the years.
But you could still understandwhat it's like to lose someone
that you love so, so much, andthat deep, deep connection and
bond is probably different forspecial needs because you felt
so protective of them and youworried so much about them and
(24:40):
your life was so much about themthat losing them is like losing
such a huge piece of you andthere's such a quietness in the
house when they're not there,you know, and it was like your
whole life was, you know, busywith them and my parents are
busy with them, and all of asudden it stopped and you feel
very, it's very lonely feeling,it's very quiet and it's painful
(25:04):
.
Speaker 2 (25:06):
So did you feel the responsibility to also support
your parents.
Speaker 3 (25:13):
Sure, I did, we were.
You know we're a small family.
I became the only child and Iwanted very much to be with my
family.
That was very important to me.
And for us to just talk abouther, look at pictures and just
remember, you know, differentfun memories and we would just,
(25:35):
you know, schmooze on Travisabout her and that was very
important to me.
And also I felt that my sisterwould not have wanted us to be
depressed.
You know she would have wantedus to go and do fun things.
You know, after the solutionwas over, we, we did fun
activities together as a family.
We went bike riding togetherand we did go and travel to, you
(25:58):
know, florida for PATHOS thatyear.
It just felt like, oh my gosh,how are we going to celebrate
Yontif without her?
Like she just loved Yontif andwe're like it's going to be so
strange to be at the table andshe's not going to be there.
And then we, just anopportunity came up for us to go
away for Yontif and I thinkthat was a very good thing for
us to do.
Change of scenery, differentexperiences, building different
memories.
(26:18):
But of course it, um, itchanged, it changed us.
You know we, we had to.
You know, deal with the lossand it was very, very painful.
Speaker 2 (26:33):
So you mentioned a lot about her midah of Simcha
and her smile.
Everyone loved her smile, soI'm wondering if you did
anything to like perpetuate that, that midah that she had.
Speaker 3 (26:45):
I did.
I made these magnets for her,shloshim, that I gave out to all
our friends and family, thatsaid, and there was a picture of
her in the middle on amerry-go-round.
She loved droids.
So I just found the picture ofher with a beautiful smile and
then I wrote and I gave it outto everybody.
(27:06):
And people tell me all the timeI look at her picture on the
fridge and it just makes mesmile.
I remember her.
And they would tell me sharewith me a memory.
Or they would tell their kids,who maybe some of them never met
my sister, and they would sayhow could you complain.
Look at Hani, look at how she'ssmiling.
Nothing got her upset, you know.
She always managed to smile andshe sometimes wasn't feeling
(27:28):
well, but look at how, how shesmiles and, and that gave me a
lot of um, to know that what Idid to, you know, help um, for
her memory, for her neshama, is,you know, influencing others
and, and obviously for me aswell, and for our family, that
gives us a lot of nechama.
(27:48):
I would say that she also hadjust the joy of being a Jewish
person.
You know that she loved beingfrom and celebrating the Yom
Tovim and I found that, oh mygosh, how am I going to
celebrate Hanukkah without her?
You know Purim.
And so Hanukkah I did that wasthe first Yom Tziv after she
(28:11):
passed away.
She passed away in Cheshvan andso Hanukkah came about.
I did like toys I donated inher memory.
She loved getting gifts, likewe used to do, you know, like
open up a different presentevery night of Hanukkah, and she
used to be so excited to seewhat she got.
And then I did that in hermemory.
And then for Purim that yearthat she passed it was on a
(28:33):
Friday I felt like, how am Igoing to do Purim together.
We used to do themes together,we used to dress up together a
lot of times and I had a poemand we would go ahead and buy
the you know the food for theShalach Manos and all the
different things that we putinside, and we would get
together and put them and makethem, make the Shalach Manos
together.
And it was like weeks ofpreparation and excitement and I
(28:55):
was like how am I going to doit this year?
And I wasn't sure what to doand about.
I would say about two weeks,maybe even less before Purim, I
received an email that mychocolate order has been
fulfilled.
And I was on my lunch break atwork when I got this email and I
was so confused Like I didn'torder anything.
(29:17):
I was like maybe someoneordered something for my
birthday, but like I didn't, mybirthday is around the same time
as Purim, you know, a little,maybe a week or so after Purim
that year, and it just hit melike this is my sister sending
me a message and I'm like I justgot so like such heebie-jeebies
, you know, I was like I reallyfelt that it was her sending me
a message and I looked into itand it was chocolate that I
(29:40):
ordered for Shalach Manos a fewyears before for a theme that we
did together, but they didn'thave it in stock.
It was out of stock and so theorder got canceled.
And suddenly orders were filled.
So I called the company and Isaid I got this email that my
orders were filled and they'relike yeah, there was like some
type of fluke in our computersystem.
There was a glitch.
(30:01):
I'm like no, no, no, I was likelet me talk to the manager.
There was no glitch.
And I told him the story.
I said my sister loved Purimand I really didn't know how I
was going to celebrate this year.
But this gave me a lot ofinspiration and I'm actually
thinking about doing somethingin her memory to tie in the
Shalach Manas to her memory.
(30:22):
And I really would love if youhad the chocolates that they
were like a crown shape and theyhad like pink foil and I was
going to do something with her.
She was her favorite color waspink and I love purple.
So we have pink and purple andlike oh my gosh, wow, this is
amazing, we're going to send yousomething.
And like, by the way, it's paidfor.
(30:43):
I'm like what?
Like I paid for it.
It was just all like so wild soit was paid for and they're
like you don't have to pay usanything, we're going to send it
out next day shipping.
Cause, like perm was likecoming up already it was almost
there and like we're going tosend it out next day shipping.
And I got it.
And I made these t-shirts thatsaid be the reason someone
smiles today and I had our nameswritten on the shirt.
(31:05):
I did pink and purple wig andtutu and socks and cool sneakers
.
I mean we always did somethingfun.
And she told me, like you arenot.
That was her message.
You are not going to let thisperm go by.
You're going to continue doingfun things without me and you're
going to make sure that messageis there.
And I used her about her smilein it and I actually went to
(31:28):
shul in my costume.
We always did, we always woulddress up for shul, for Megillah,
and someone came over to me andsaid can I take a picture of
you in your costume?
I want to send it to somebody.
I said, oh yeah, sure you know.
And she said I want to send toShamia Dar.
(31:49):
I knew Shamia Dar from Instagram.
She's a Basmala, entertainer,motivator, and she told me that
she had surgery and she wasn'table to like she was on crutches
, she wasn't able to walk, shehad and she wanted me to.
She wanted to send the pictureto her to give her a little
chesed, because she felt that Iwas really dressed up as her,
because that is her thing Be thereason someone's small, she
wears tutus and cool sneakersand cool socks and that's how
(32:12):
she dresses to her bas mitzvahs.
And I said sure, and she postedon Instagram and I got tons of
likes and I just felt like thisis my sister, like she's again
sharing her message about semchabe'er smiling, about not
letting life, you know, get youdown when things are tough and
you just keep smiling and keepbeing happy and joyful and
that's what you wanted.
(32:33):
And I was like wow, like itjust couldn't be more clear that
my sister's message of it wasthere, it was happening, it was
Purim and it was so appropriate.
I just it really brought me alot of joy to see that and
everyone loved the costume andand it just all came together
and I felt that she sent me thatmessage that was so clear to me
(32:55):
that it was from her.
Speaker 2 (32:56):
Wow, that's really really nice.
Speaker 3 (32:59):
It was a great story.
Speaker 2 (33:05):
And how much after she was lifted did you get
married it really is and howmuch after she?
Speaker 3 (33:08):
was lifted, did you get married?
So about two years after mysister passed away, I met my
husband and it was after manyyears of dating and I dated a
lot.
You know, I really mostly I wasset up by shadchanim friends,
family members, and we actuallymet at a Shabbos meal and it was
(33:31):
so natural and we got to knoweach other and we started dating
and a few months later we gotmarried and it was just, it was
just really special, I mean howour story was just so casual and
um, easy, you know, compared tothe years of dating.
And I will say that after mysister passed away I did get a
(33:52):
lot more suggestions, you know,because dating is definitely
challenging.
That's another story, but itwas.
I mean I dated for many years.
I was single for like 15 yearsand my sister wanted me to get
married so much.
I mean she met a lot of theguys I went out with.
She was always asking me mydates and she wanted to hear
(34:12):
about it and you know she justreally wanted to get married.
She was so excited for me tofind somebody.
And I just felt that my sisterworked this out.
I mean she made like, withGod's help, she was working up
there, she was knocking on thedoors and she was like I'm going
to get my sister married andshe really helped find him
because he is somebody.
(34:34):
My husband, gershi, is someonethat she would have absolutely
adored.
His sense of humor, she lovedpeople that were funny and made
jokes, and he also took care ofspecial needs kids for many
years, so he would not have beenafraid by any of her.
You know medical challenges andyou know she would have
absolutely loved him and I justfelt that my sister was again in
(34:58):
my life and guiding me fromabove and she helped me find my
husband after such a long timeof dating and things.
Barak Hashem went very smoothlyand I was very, very thankful
for that.
Of course, we missed her beingphysically with us for the
wedding.
She would have loved it gettingdressed up, getting her hair
(35:20):
done, getting to be witheveryone, dance and be part of
the party.
She always loved a good partyand so she would have definitely
had a blast at my wedding.
It was a lot of fun.
Everybody was just full of joyand laughing and dancing and it
was we had.
We had a great, great time andof course I, as I was walking
(35:42):
down the chuppah, I thoughtabout her.
You know that she's there.
We went to the kevar beforebefore I got married, and we
invited her to the wedding and Iknew that her neshama was there
with us.
Did you feel?
Did you feel?
Did you feel her neshama or notreally?
Speaker 2 (35:57):
Did you feel her?
What Did you feel her?
Neshama or not?
Speaker 3 (35:59):
really I felt that she was there.
I felt that she was with us and, of course, I wish she was
there.
You know that's part of thegrief.
That's very challenging that,and a lot of people that I know
that I spoke to over time toldme the same thing that you know
you just wish they could bethere and the pictures and the
videos.
(36:19):
And you look back at thepictures and the videos and
they're not there and you justwish that they were with you,
especially for these hugeoccasions in life.
Obviously, I never thought thatmy sister wasn't going to be at
my wedding.
I always thought she would.
You know she would be there.
She would love to see me getmarried and have children and be
a part of my life.
You know you just try not tothink about those things.
(36:41):
You know you try to be positiveand hope that they that I was
hoping my sister would live avery long life.
So I definitely felt her, youknow, with us during the Simcha.
But we miss her tremendouslyand you know she yeah, she would
(37:03):
have been so happy for me tosee me get married.
It would have been such a joyfor her.
Speaker 2 (37:08):
Wow, wow.
And what about when you hadyour baby?
Speaker 3 (37:13):
So about nine months ago I had a beautiful baby girl
and I also thought about mysister.
When I found out I was pregnantI said, oh, I wish I can call
my sister you know and tell her.
I just look, you know, sometimesyou just have conversations
with there's a conversation withmy sister, sometimes Like, oh,
honey, you know, I wish I couldtell you that I'm sure you know,
(37:34):
like I'm sure you're watchingover me and you know already
that I'm having a baby, or I'dwrite, sometimes letters to her,
you know, and express to herwhat's been going on in my life
and tell her about it.
And so we actually found outthat we were having a girl and
it was almost like not even adiscussion.
(37:54):
We knew we were going to nameher after my sister and I
thought about it like that'sgoing to be bittersweet, you
know, because that was mysister's name.
At the same time, like wow,what is this to have my sister's
name?
You know how special that is tocarry on her name.
(38:16):
So we named our daughterYochava and Chana.
Yochava was after mygrandmother was really close
with and my sister was also veryclose with my grandmother.
And then Chana was my sisterand we call her Chani.
It's like my sister's name.
And she just yeah, she wouldhave loved the baby.
She would have loved playingwith her, facetiming with her,
(38:40):
going out on trips, doingactivities.
She would have actually lovedto be the aunt.
You know fun and do activitieswith her and projects and you
know she would come for Shabbos.
She would have loved it.
She would have absolutely lovedit.
Speaker 2 (38:55):
Wow, wow, and your parents could call her Hani
honey.
Like it's comforting for themyeah.
Speaker 3 (39:03):
So I um, I remember having a conversation with my
parents when I was pregnant,because I didn't tell them what
we were having.
But I said like, just you knowif it's a boy or if it's a girl,
but if it is a girl, would yoube, you know, comfortable
because I want, it was importantfor me to make sure that it was
okay with them to call her Hani.
And right away their responsewas of course, we would love
(39:25):
that.
It would be so exciting for usto have her name in the family
and really keep her memory aliveand really what a schuss it was
.
And I remember she actually wasborn a couple weeks early and
my sister's yard site was aboutlike a little over a week after
(39:47):
I had the baby.
So it just felt like it was allnot a coincidence that I had
the baby early and we named herin shul and I was there and it
was just such an emotionalexperience for me to have my
baby named after my sister andyou know everybody was emotional
and crying and we were just, uh, excited.
(40:08):
And you know, when everyonepeople asked me oh, what's her
name?
I mean a lot of people wereexpecting it.
They were like, okay, when isit official?
You know, when is she beingnamed?
And after shabbos, right away,everyone said, please text me
the name right away.
Um, so a lot of people expected.
And then, when people asked mewhat's her name, oh right, fanny
.
And like wow, how special thatis that you named her after your
sister.
(40:28):
And I said, of course, like Iwouldn't have done it another
way, right, so I did have timeto prepare for it while I was
pregnant because I knew what Iwas having.
So I had time to like thinkabout, like, what's going to be
like to call my baby by mysister's name.
And you know, I got used to it,the idea of it, and so it's,
you know, my sister Hani, andnow it's my daughter Hani, and
(40:50):
it's very special for her tohave her name.
And I, you know I'm going totalk.
I already show her likepictures on the fridge of her.
You know I'm going to talk.
I, you know, I already show herlike pictures on the fridge of
her, you know, smiling, and I, Iwill talk about her and she's
going to know who she's namedafter, you know, and what a
special privilege it is to haveher name.
Speaker 2 (41:11):
Wow.
Speaker 3 (41:11):
That is so nice.
That's really really beautiful.
And you know me and my sister,we were very close, we did a lot
of fun things together and,like I said, she was just a very
happy person.
She loved adventure.
She loved going on rollercoasters.
I mean you think that with herillness that she wouldn't be
able to go on a roller coaster.
And I remember the first timewe were on a kid's car trip and
(41:33):
I asked the doctor, like did yougo on a roller coaster?
And like, yay, look whathappened.
She, like, did she go on aroller coaster?
I'm like, yay, what couldhappen?
She might get a little nauseousafter, like you know, you see
all the warning signs by theroller coasters, like you can't
go on with this issue, thatissue.
She had so many of those issuesand they said, yeah, she can go
on and she loved it.
She loved the drop.
I mean, I was afraid for her.
(41:54):
She didn't want to hold on, shejust loved excitement.
She loved animals.
She wasn't afraid of any animal.
She especially loved dogs andbirds and rabbits.
But she had a love for life andpeople and just doing things.
She always wanted to go places.
What are we doing today?
Where are we going?
She loved shopping and everytime I went on a trip, she asked
(42:17):
me oh, bring me back a souvenir, and she would give me a list
of things that she wanted me toget.
And she kept up with everything.
She knew what was going onInstagram.
She knew what was going on thelatest cookbook was coming out.
She would tell me, oh, you haveto get it.
And she would take screenshotsof things that she wanted.
She was very with it, she knewwhat was going on and she was
(42:38):
very fun to be around on and shewas very fun to be around.
Speaker 2 (42:44):
Wow, that's amazing.
Yeah, I mean, you're reallydescribing someone that had a
real real capacity to reallylove.
Speaker 3 (42:52):
It sounds so special and beautiful.
Yeah, we really loved eachother tremendously.
I mean, people would tell me, Isee the way your sister looks
at you, I see the way you lookat each other, that's a really
special bond.
People would tell me, like, Isee the way your sister looks at
you, I see the way you look ateach other, that's like a really
special bond.
Like people would tell us, youknow, when it came to the Shiva,
oh my gosh, the way you andyour sister got along, the way
that you hung out together andthe way that you took care of
your sister, they were just soimpressed.
(43:14):
I mean, for me it was secondnature, of course, you know, and
I would run to the hospital,you know, after work, when she
was sick in the hospital, andpeople would say, oh, you don't
have to go every day.
You know, take a break.
I'm like my sister is not goingto happen, like those things
are a break.
When are you coming, devorah?
Like I would finish work.
She knew what time I finishedwork.
(43:38):
She would ask me you know, whenare you coming?
What are you bringing?
You know, what are we going todo today?
Um, especially when there wasno school, during COVID.
You know I would come up withactivities.
We would do baking together, um, any type of, you know, art
activity she loved and just lookforward to it.
And it was yeah, it was, ofcourse I'm doing this for my
sister.
All the time I was alwaysthinking about her and what I
(44:01):
could do to make her have funand happiness and do activities
with her.
We were always, you know yeah, Imean she she had her life.
She went to her day habit.
You know, as an adult, she wentto a program during the day,
but on the weekends, you know, Iwould always do something with
her.
You know we always spend timetogether and obviously she knew
(44:22):
I had my personal life and myfriends and dates and all of
that.
And she would send me voicenotes.
She would FaceTime me and callme what are you doing now?
Where are you going?
You know she was like veryinterested in everything that I
was doing and she loved hearingabout it.
She would send me a voice note.
I remember, after she passedaway, like I was like it was
such a strange feeling, likethere's no FaceTime, there's no
(44:44):
phone calls.
You know she always called meon like Facebook Messenger.
So it was like a different ringwhen she called me and I was
like it was very strange not toget calls from her and I missed
it.
I was like when is she callingyou?
Know you like, know you like,kind of like when's the?
phone call.
Yeah, when's the phone callhappening?
That was very, very hard.
Yeah, it's very, it's verychallenging to lose someone that
(45:08):
you, you love.
It was for sure the hardestthing that I had to go through
and, like I tell people that youknow, lost a family member.
It's grief is not linear.
It's not like you know there'sa process and you go through the
beginning, the middle and theend and that's it.
It has its ups and downs.
You know it has its times thatyou feel like you're okay and
(45:28):
you're living life and you'redoing everything you're supposed
to be doing.
And then there are times that ithits you a yartse, a simcha you
know birthdays, yontif andyou're missing that person so
much.
Or a picture, a memory comes upon your phone, or you meet
somebody that knew your siblingand you just the memories come
(45:49):
flushing, flooding back and youjust wish that they were with
you.
You have a dream about them.
You know they, they about them.
They're always going to be partof your life, even if they're
(46:11):
not physically with you.
I would say that the biggestthing that helped me right after
she passed away was going backto routine, going back to work,
doing my everyday routine.
I would say that's the bestadvice I can give somebody is to
try to get back and do thethings that you normally do,
that you love, and it will helpyou feel a sense of normalcy
under the crazy circumstances oflosing someone that you loved.
(46:35):
And then you know, over timethere's going to be times that
are going to be very sad andpainful and you need to put
aside time for that.
The feel the sad, the feel thepain.
It's not going to be forever.
That raw, raw pain that youhave right after the person you
love passed away is going to geteasier.
(46:57):
It's not going to be thatyou're not going to be crying
all the time the same way thatyou do when they first pass away
.
It will get easier, but it's.
You know there's going to bethings in life that are going to
happen that you're going to say, oh my gosh, I wish they were
here, I wish I could call them,I wish I could spend time with
them, and, especially forsomeone that has a sister or
(47:18):
brother with special needs, Iwould just say, like, spend as
much time as you can with them,take a lot of pictures, videos.
I mean that really helped me alot, me personally.
Looking back at the picturesand videos and the voice notes
that we shared together, hearingher voice, seeing her face and
the things that we did and thefun memories I could think about
.
Okay, you know, we had 28amazing years together.
(47:40):
I was lucky and thankful tohave that and just cherish the
time you have.
You know, every day is really agift and just enjoy all the
memories that you have with themand that's, you know.
That's.
That's the biggest Nekhama forme is that I know that I was
dedicated to her.
I loved her tremendously.
She knew how much I cared forher and how much time I
(48:03):
dedicated to her, as much as Icould.
And that's the biggest comfortfor me is that I know I did so
much for her and I loved doingit.
You know, and, like my family,we always say we would have done
it for another bunch of years,you know, but we're thankful
(48:24):
that we had her for this amountof time.
Hashem gave us a true gift andwe all just grew and learned so
much from her and we still doabout her.
And and you keep the memory.
That's how you keep their themalive in your, in your life, by
talking about them and thememories and the you know the
the fun that we had.
(48:46):
Um, I think that we as a familylove hearing from people stories
of memories.
I remember when we were sayingShabbat, like my mother would
say to people what was yourmemory of Hani?
And then they would go on totell us a story and something
that they would remember.
And even now, if I go out witha friend and someone that I
didn't see for a while and shewas telling me oh, I remember
(49:08):
your sister and I remember thatI used to call back in the day
before we had smartphones, Iused to call your house phone
and your sister would answer thephone.
She was like the home secretaryand like she started talking
about it and I remembered it andshe would talk to me on the
phone for 20 minutes before sheeven gave me the phone.
I was like, hey, but now it wasgreat talking to you, Now I can
(49:31):
speak to Devorah.
You know that she would giveher the phone.
So you know, this just happenedthis past summer where I just
spoke to a friend and she wastelling me the story.
So it's so nice to hear, Ithink for people that went
through loss, so nice to hearthe stories still now.
You know it's almost five yearssince she passed away and you
just want to keep hearing aboutthem.
You want to still talk aboutthem, and you know that's very
(49:54):
important to me.
Speaker 2 (49:57):
Wow.
Well, thank you so so much.
I think that's such a beautifulparting message.
Like you know, the theremembering that grief isn't
linear, the people knowing thatyou know those that are grieving
love hearing memories.
They don't have to be scared ofsharing memories and, yeah,
that was such a like niceparting message.
So, thank you so so much forcoming on.
Speaker 3 (50:17):
Thank you so much for having me.
It was really a pleasuregetting a chance to talk about
my sister, hani, and you know.
If there's any questions oranything that comes up, you know
, feel free to.
You know, share with me and I'mhappy to help.
Anybody that you know wants totalk to somebody, wants support,
you know, or has needs advice,I'm happy to help in any way
(50:39):
that I can.
Speaker 2 (50:41):
Amazing.
Okay, so if there's anylisteners that want to reach out
to DeRora, you could reach outto me and I will put you in
touch.
Thank you so, so much, thankyou so much.
Speaker 1 (50:53):
You've just listened to an episode of the Grief
Journey Podcast with MiriamRibiat, brought to you by Mayrim
.
For more episodes, visit theMayrim website at wwwmayrimorg.
Help us reach more people whomight benefit from this podcast.
If you know someone who couldfind it helpful, please share it
with them.
If you have questions orcomments for the speaker, or if
(51:16):
you'd like to suggest a guestfor the podcast, we'd love to
hear from you.
Email us at relieffromgrief atmayrimorg.
We look forward to having youjoin us in the next episode.
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