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86. The Gift of Second Chances- With Diana Kupershmit
124 Plays4 years ago
Diana Kupershmit holds a Master of Social Work degree and works for the Department of Health in the Early Intervention program, a federal entitlement program servicing children birth to three with developmental delays and disabilities. She has published online in the Huffington Post, Manifest Station, Mutha Magazine, Power of Moms, Motherwell Magazine, Still Standing Magazine, and Her View From Home. On the weekends, she indulges her creative passion working as a portrait photographer specializing in newborn, family, maternity, and event photography. She lives in New York City. After their oldest daughter, Emma, died unexpectedly at eighteen years of age, Diana began writing to make sense of the grief of losing a child. Her memoir, Emma’s Laugh, the Gift of Second Chances, is a tribute to, and celebration of Emma’s life.
Contact Diana Kupershmit- http://www.dianakupershmit.com
http://www.instagram.com/picsbydk
Contact Kendra Rinaldi to be a guest in the podcast or for coaching:
https://www.griefgratitudeandthegrayinbetween.com/
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Transcript
Finding Belonging in the Special Needs Community
00:00:01
Speaker
And then when Emma was born, I had to find my place in this community of special needs parents and children. And those are all places I didn't want to be in. I didn't want to be a new kid on the block in high school. I didn't want to be a special needs mom. I didn't want to always feel like an immigrant. So belonging, belonging, belonging was very important. And I made decisions like giving Emma up from this place of feeling grief at losing
00:00:28
Speaker
a sense of place, a sense of community, what have you, right? Because grief is loss of different things.
Introduction to the Podcast
00:00:38
Speaker
Hello and welcome to Grief, Gratitude and the Gray in Between podcast.
00:00:45
Speaker
This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and transitions that literally shake us to the core and make us experience grief.
00:01:01
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys.
Meet Diana Kooperschmidt
00:01:13
Speaker
I'm Kendra Rinaldi, your host. Now, let's dive right in to today's episode.
00:01:24
Speaker
excited to have Diana Kooperschmidt today with us in the podcast. She holds a master's in social work and works for the Department of Health and she is a mom and we will be talking primarily today about
00:01:41
Speaker
her memoir titled, Emma's laughed, the gift of second chances, which is a tribute to and celebration of Emma's life, her oldest daughter. She's also a photographer and lives in New York City. And we'll be finding out more as we chat.
Immigrant Experience and Family History
00:02:00
Speaker
We were connected by our mutual friend, Meg Nochedo. I always mess up how I pronounce Meg's last name. No, no.
00:02:10
Speaker
No, I don't know. I'm like, I want to say it. Spanish version. I say I want to say no, say no with them without the C, you know, that sound. Yeah. So because it's the C who has been one of the guests. So several of the people that I've interviewed lately have been referrals from from Meg connections from Meg. So yeah, I'm so grateful that she connected us. Yeah. Yes. Well, thank you for being here, Diana.
00:02:37
Speaker
Thank you for having me. I'm glad you're here. So share a little about you. So about your upbringing, where you live. So let's see, where did you grow up? So I was born in the former Soviet Ukraine. And yeah, my family and I came here as Jewish refugees in 79. That was the first wave of people leaving the Soviet Union.
00:03:04
Speaker
And it was an opportunity for a new life. We were super grateful.
00:03:13
Speaker
And I grew up in Forest Hill in Queens in New York with in a borough that was very much like United Nations. So I had friends from all corners of the world. And it was very comfortable making that transition going from Soviet Ukraine to the States. I felt like I assimilated seamlessly, picked up the language. It was great. How old were you? I was nine.
00:03:40
Speaker
Oh, yeah. You really do not have a single bit of an accent as if English were your second accent. I grew up with both English and Spanish and I still have an accent. No,
Early Marriage and Parenting Challenges
00:03:52
Speaker
actually, I was going to tell you that you don't know your background. I would say also, I think I think if you I always had like an ear for sound and music. I studied music.
00:04:02
Speaker
But I think they've done studies where like if you learn a new language before you're 10 years old, like you really don't have an accent. My husband who came here when he was like 11, you could hear he's got an accent. But also from the Ukraine. Is he also from a different city, but from I say from a village, I'm from a big city. Isn't it so funny you ended up so I also have been in the States for so long. And I also ended up marrying a Colombian and the fact that you also
00:04:31
Speaker
Ukrainian? Isn't that so like odd that like you end up in this country thinking you know and that you end up there? There were all these immigrant kids like hanging out you know in our tenement building's parking lot. We were all like it was just this big wave that came from Ukraine and from Russia.
00:04:49
Speaker
And so we were high school sweethearts. And we did everything sort of by the book, by the script. We got my college degree, then got married very young in our early 20s, which was very not American, but very European by European standards. It's normal. We were 22 and 23. I got my master's. And we started a family. We were very excited, young.
00:05:18
Speaker
26, I was 26 when our first child was born, Emma, and she was born with a rare chromosomal abnormality.
Coping with Emma's Diagnosis
00:05:28
Speaker
We were shocked because I had a very easy pregnancy and we have no history of this. She was basically a new mutation is what they called. And so this chromosomal condition left her with
00:05:40
Speaker
physical and developmental delays and disabilities and a myriad of medical conditions. And they told us she wasn't going to live past her first birthday. So needless to say, it was a shock. I unraveled. And funny enough, I'm a social worker with a history of working with special needs kids as a student.
00:06:05
Speaker
And even after I graduated, and so now, you know, I have this special needs child without a prognosis and I'm not dealing well. Like I completely am not coping. And because it's unprecedented and we don't know anybody that has kids with special needs and we don't know actually what her diagnosis is going to mean for her future because she's so one of a kind, right? So the hospital social worker sees that we're not dealing well, she was born
00:06:35
Speaker
full term, but like very small, four pounds, 12 ounces. And the minute that I saw her, well, first of all, when I first held her, I felt like, okay, I just created something perfect. Like my greatest creation by far, you know? And then I took a look at her and she was very green and floppy and small and like a little bit alien looking. She had some dysmorphic features and I as a new mom did not know how to alert the doctor to this without sounding
00:07:03
Speaker
not matronally correct. I didn't want to sound like a rejecting mother because I see this baby that doesn't look well. And I'm like, am I the only one that sees this? I look at the doctor and I said, she doesn't look like my husband or myself. But what I was thinking was that she looks sick. She looks imperfect. She looks not OK. So they whisk her away and they do genetic testing. And we find out that she has this rare diagnosis.
00:07:32
Speaker
And the hospital social worker saw that I was not dealing well. And she called us into her office and she said, you
Considering Adoption
00:07:38
Speaker
know, there are other options to bringing Emma home. And I was just leveled by that because that, first of all, the shame. And I'm thinking like, well, if I don't feel like I'm capable of raising my own child, like who would do this? You know, and I asked her and she said, there are people that have a calling in life, you know? And of course I felt such guilt and shame.
00:08:00
Speaker
But at the same time, I felt like she threw me a life raft, you know, that I didn't have to do this thing that I didn't think I could do. And so we went home and we spoke, my husband and I spoke and we said, you know what, she deserves to be loved and she deserves to be in a family, if not ours, then if we are to find her a good family, those are the only conditions under which we would give her up.
00:08:25
Speaker
And so miraculously, we found this wonderful family who had already adopted three Down syndrome children, two boys and a girl, and they wanted another girl for their, like a sister for their, for their, for their girl. We visited them. We were super happy. They were religious people. They were like Orthodox Jews. They were God fearing people. Like we said, they're not going to hurt her. You know, this is like perfect.
00:08:50
Speaker
And she was about five months old when we separated from her. But at that point I was already connected with her. I had already made that, you know, everybody in the family had made that connection. My parents, my in-laws, you know, our friends, everybody. But we gave her up at five months. The adoption went through and I was already pregnant with my son because I told myself that I wanted a do-over, that I was going to get it right.
00:09:18
Speaker
that the next baby was gonna be healthy. And I went home and I sat on my hands and I was miserable. I realized that I made a mistake because we had sort of an open adoption situation so that we spoke often with the adoptive parents and the adoptive mother would call me and say like, Emma's in the hospital. When we gave up, she was medically stable. She was learning to eat by mouth a little bit. She had a G-tube. So primarily the feedings were from her G-tube.
00:09:48
Speaker
But she was learning to eat by mouth a little bit, because there was risk of aspiration. So the mom would call me and say, like, the adoptive mom, she's in the hospital with pneumonia and RSV. And I think she was preparing me for the worst. And I'm miserable, like, pregnant out to here thinking, like, we made a mistake, like, we missed her, you know, but the adoption went through.
00:10:09
Speaker
And so at one point when I shared my concern with my husband, I said to him, I said, I think we made a mistake giving her up. She's not doing well there. We're here. We can't do anything to help her. He said, you know, I've been visiting her behind. Everybody's back. He'd been visiting her in the Pennsylvania and not telling me about it. So a couple hour drive. You're in New York. You're still in New York. Couple hours drive. Yeah. He said he was going. Taking the train.
00:10:38
Speaker
he was going after his fancy fencing tournaments that he was involved in, but he was going to visit her. And every time he visited her,
Emma's Return and Second Chance
00:10:45
Speaker
she was in the hospital. And this last time that he visited her, she was in the hospital, and the adoptive father was there. And he shared something with us that the conditions under which we gave Emma up, which was a two-family household, no longer existed. Now, without giving too much away, because it's in the book,
00:11:06
Speaker
The conditions under which we gave her up no longer existed. So we reached out to the adoption agency, and it turns out that we had our rights back. We were able to get her because the conditions were null and void. And so five months after we gave her up, she came home. So you had her at 10 months back when she was 10? Yeah, at 11 months, yeah. And she came back in worse shape than when we gave her up. She came back on oxygen.
00:11:35
Speaker
Um, but you know, we had this second chance, you know, and then I realized that after she came home, that this was my real do-over. This was really the do-over, not your pregnancy. Right. But this was the second chance. Um, and we felt very grateful because, you know, most families that give up their child for adoption, they don't know what the other alternative would have been like.
00:12:01
Speaker
And we did. We knew what life was like with Emma and without her and we preferred the former. And so I always say like it was meant to be, I was meant to take this detour and she was meant to come home and that's exactly what happened. So now I had to do better and I had to make it up to her and I had to make up for the five months that we were separated
Fears and Joys of Parenting Emma
00:12:21
Speaker
from her. And that's the promise I made her.
00:12:25
Speaker
And yeah, so we had like instant twins practically because they're 13 months apart, Josh and Emma are 13 months apart. And then we had another child three years later. And we had this family and I realized, you know, that the things that I feared that I wouldn't be able to love Emma enough because I didn't love myself enough, it turns out, or that we were going to have this dark insular life with her because
00:12:52
Speaker
you know, society told me at least that, you know, kids or people with disabilities live tragic lives and they're to be pitied. And I just saw myself existing alongside her and I didn't want to be in that place. So the thing about my book
00:13:12
Speaker
and my life, essentially, there's a lot of theme of belonging, right? Belonging to a country which rejected us, belonging to this new country which we had to prove our place in, you know, and we had to earn our right to be, you know, these people with a second chance in America and to prove ourselves. And so there's a lot of themes of belonging throughout my life. And then in this book, because as I said, the country,
00:13:44
Speaker
than another country. Then my parents moved me in high school and I had to belong to a new community of friends and I had to leave my old friends behind. And then when Emma was born, I had to find my place in this community of special needs parents and children. And those are all places I didn't want to be in. I didn't want to be a new kid on the block in high school. I didn't want to be a special needs mom. I didn't want to always feel like an immigrant. So belonging, belonging, belonging was very important and I made decisions
00:14:13
Speaker
like giving Emma up from this place of, you know, feeling grief at losing a sense of place, you know, a sense of community.
00:14:22
Speaker
What have you, right? Because grief is loss of different things. It's not just- Yes, I interview people that have grief of all kinds, not just of death because it's something we have this connotation thinking that it's just about death and it's not, we experience grief. The moment even our, I tell people the moment even our passive, like if somebody had a pacifier and the pacifier suddenly disappears, sorry, that child experiencing grief.
00:14:50
Speaker
The loss right there, they're blanky, they're everything. It's like, yeah, and moving, what you express right now, that moving and I'm like jotting down notes here and things that kind of resonate for even like the title of the episode. And it's like that part of belonging, what you just said, or the longing to belong or something to that extent. It's so true, like that, that, you know,
00:15:16
Speaker
that uneasiness that comes in all these things of switching and transitions that you don't know where you fit in, right? Right, right. Yeah. And so, you know, a lot of my decisions that I made, at least when giving Emma up, was coming from a place of grief, right? Because
00:15:33
Speaker
Yes, her passing was the ultimate grief. That's the one that most people are familiar with. But the truth is that the first grief I experienced with her was when she was born, right? The grief, the loss of a dream of a healthy child, the grieving, the life that
00:15:50
Speaker
that she would never have grieving the life that we would never have with her. Those, you know, I was in that space of grief. And I worried that that grief would follow me throughout my life with her. And I couldn't, that I couldn't, you know, do that hard thing, right? Of giving her a good life. And I delegated it to somebody else. I figured somebody can do better than me, which is crazy because obviously, you know, I'm her mom and nobody can love her the way I love her. But I didn't know that as a young person,
00:16:20
Speaker
grieving, this dream, this, you know, because remember, my life was so everything was like, right, according to script, right. And I also had like these perfectionist tendencies, everything had to be a certain way. And you don't account for these unexpected things that life throws your way. So we were in uncharted territory.
Celebrating Emma's Milestones
00:16:41
Speaker
And but what I learned as you know, what I learned as I was raising her and we had this like good life, we had
00:16:50
Speaker
Joy, we had, you know, grief was there, but it took like a backseat to the joy, the wonder of watching her do new things and to raising our typically developing children. Like we had, we were able to do everything that what I considered a normal family was doing. And then some, you know, my husband and I ran the New York marathon. Like we did things, you know, our kids took the requisite instruments and had the requisite sports and Emma had her therapies
00:17:19
Speaker
and her therapist and her nurses. And we were straddling these two universes, but we had it covered. You're saying all these things now, timeline wise here. So they had given, told you she'd live to be a year. Yes, that she wouldn't live past based on her medical condition. And she, but on her 18th birthday, I recorded a video that I put on Facebook.
00:17:45
Speaker
showing everything, all the skills that she had learned, everything that she knew. She was showing all her tricks.
00:17:54
Speaker
And we were basically aiming a middle finger to that doctor that predicted that she wasn't gonna live past her first birthday. Like, you see? And my husband said, why are you posting this on Facebook? You know, cause at the time I was like, I was still, I was just starting my photography business that I had to advertise my pictures. And I was advertising my kids like, these are my beautiful kids. And this is Emma. And I introduced Emma like to the, you know, to all my followers. And I was so proud of
Lifelong Parenting Responsibility
00:18:17
Speaker
her. And he said, why are you posting this on Facebook and whatever? I said, because I'm proud of her and I want,
00:18:22
Speaker
I want people to know I want people to meet her, you know. And of course, after she passed, he said, I'm so glad that you did that video that you took that video, you know, like, because those are, you know, those memories, same as with the photography, you don't get those back. I look back at the pictures, I'm like, I don't remember that my kids, if not for these pictures, I wouldn't remember them that way, you know, days are long, right? Cool.
00:18:47
Speaker
Wow, that is like, there's so much here. And then I wrote another title. I'm like, the part that you said, grief took a backseat to joy. That phrase just moved me a lot.
00:19:07
Speaker
We underestimate what we don't realize that these emotions can all live and dwell together right, but the fact that at that moment in life, even though there was grief because you're constantly living, not only.
00:19:22
Speaker
with the idea with the fact that you had a child that had these needs and the still the loss of the quote unquote dream like perfect you know picket fence type of family but the fact that you didn't know when the last day was going to be after you pass that year mark you know then every time was a milestone right and kind of like not knowing when was
00:19:47
Speaker
this last day, quote unquote, going to be and I can't. Worrying that she was going to outlive us and then who's going to care for her. Oh, wow. Even that. Wow. The worry was that, like, I didn't want to burden my healthy children. So I always made sure that, you know, we and I had people that care for her, you know, whether it was it was always us and the nurses and and her therapist. I didn't want, you know, to my kids were younger and they couldn't physically handle her anyway. But
00:20:16
Speaker
we worried about who was going to care for her if she were to outlive us. Like that's a legitimate worry of parents, especially these kids, because she was so one of a kind and nobody could know that she was going to catch pneumonia and that was going to be, you know, her demise. So that was a fear that that was, you know, the other piece of it was
00:20:38
Speaker
We're always worrying about, you know, even the people that were caring for her because we had various nurses coming in and out of the home and she went to school and so, you know, they would pick her up off the bus. We were both working. My husband and I full time.
00:20:52
Speaker
Um, and there were instances where she got hurt in the care of the nurses or, you know, she came off the bus with a broken arm.
Belonging and Life Transitions
00:21:00
Speaker
And so we worried cause she couldn't tell us, right? Tell us if somebody was hurting her, somebody, you know, so the few, the times that I'd witnessed her getting into trouble or nurses being negligent, not intentionally, but her getting hurt. That was devastating because you don't have control of those things. You are essentially, you know,
00:21:22
Speaker
giving up control to another person, right? It's like, imagine you have to have a babysitter for the rest of your life, one of your kids, and that child can't tell you what's being done. So that was a worry because, you know, we always had this thing of keeping her safe. We had to keep her safe, right? Because she
00:21:42
Speaker
didn't have agency over herself. She couldn't tell us. She couldn't keep herself safe. So that was a constant worry. And that's kind of living in a place of grief because you're constantly worried about, you know, I guess it's true for healthy kids too, right? My kids are in their early twenties now and I'm still like, text me when you get home, text me when you leave, you know, in the middle of the night. I'm still receiving these text messages. You never stop worrying. And, um,
00:22:10
Speaker
Yeah. Now what year was it that Emma passed away? What year did she pass away? Almost seven years ago.
00:22:20
Speaker
2015. 2015. Okay, let's talk about the tools you used for your grief journey once she passed because and even, I mean, you talked about running, you know, marathons and things like that when she was like, so even the things that you did even while you were raising her as well, that would just help your mental health and your spiritual health and emotional health as well.
00:22:47
Speaker
And then I think tools you used once she passed away to help your grief journey. So when she was alive, my thing was just to I had a thing about projecting a sense of normalcy. Like I didn't want to, as I said, belong to that special needs community. So unfortunately, I didn't seek that community out. I had my village of friends and family, and that was enough.
00:23:17
Speaker
for all intents and purposes. But after she passed, I started writing and I connected with other special needs parents. And I realized that there was this piece that was missing, that my life would have been richer. I would have felt less alone in being a special needs parent because I had my friends and family, I had my village, but it's not the same.
00:23:40
Speaker
And I didn't want, but I didn't want, I didn't want, I didn't want, because then I felt like, okay, if you belong to a different community, then you're different and that, you know, and separate and not equal necessarily, right? Because again, that narrative was still playing in my head, like,
00:23:56
Speaker
People with disabilities are pitied and it's tragic and
Lessons from Emma and Seeking Comfort
00:24:01
Speaker
everything. And I said, I didn't want that. I didn't want that to be the picture. I'm not tragic, nothing to see here. We got all these balls in the air. We're doing okay. And we were doing okay. We were managing these two universes. Well, managing well. So, you know, but it's interesting because
00:24:20
Speaker
in this journey of dealing with the everyday grief, my way to do it was that I was a certain kind of mom with my healthy kids and a different kind of mom with Emma. So Emma was like, Emma University, right? She taught me how to be in this world, right? She was nonverbal, but she
00:24:41
Speaker
taught me to find my voice in advocating for her and getting the building to build a ramp so they would be like wheelchair accessible like oh no the things fighting for good nurses fighting for good care she gave me a voice right a voice that i didn't have before i was always kind of this like i'm not going to ask for anything i don't want to be that person i don't want to make waves
00:25:03
Speaker
Um, you know, almost like afraid of my own shadow. And she taught me to be brave and intrepid because that's the way she was, you know, she, uh, she had a mean non-verbally, a means of getting what she needed. And she taught me to do the same for myself. So.
00:25:22
Speaker
Emma existed in like this very, I don't always kind of present state. She was always like in the moment, the things that I strive for in meditation, right? Like be in the moment, be mindful. She was happiest watching her musicals, chewing on her bib, flipping through magazines, you know, and she was, she had this like lightness of being, you know, like
00:25:45
Speaker
so chill I'm so good like she was happy you know and to look at her you see like okay this is enough she's enough and I'm enough so when I was with Emma my interactions were so different because with her it was enough to just sing to her and clap to her and she was like your best friend if you gave her like
00:26:03
Speaker
two minutes of attention. She was like, had like, loved me and blazing on her forehead. She was like, she had this energy. Everybody was drawn to her. Everybody loved her. In school, she was like the mayor of the school. Everybody knew Emma, you know? And I was like, look at this child, you know? She's perfection. This little girl that I thought was broken, that was not perfect when she was born. She was the epitome of perfection. So I was one kind of mom with her. It was very easy to be with her.
00:26:31
Speaker
with my healthy kids, I had to be like the mom. Like, did you do your homework? Did you practice violin? Did you get into that perfect college? And completely different conditions, a completely different mom, you know? And living these parallel lives, not realizing it. I only started, when I started to write and reflect on the kind of parent I was to my different children, did it dawn on me that like, okay, this is what Emma was teaching her. Not to say that this was the purpose of her life, right?
00:27:00
Speaker
She had her own journey. I had my journey, but she was, you know, by example, she was living by example and all I had to do was like look in her direction and see that this is the way to be in the world is to be like Emma, you know? So that was my journey when she was alive. When she passed, I started, I, the first thing that I did right was I went to see a medium.
00:27:30
Speaker
and intuitive. Two weeks after she passed, my girlfriend saw that I was not doing well, and she recommended this medium, this intuitive that she saw, who had helped her. And so I said, I was so desperate. I had nothing to lose. I was already talking to the whatever. I was reading books like, do dead people see you shower?
Healing through Writing
00:27:51
Speaker
Because I didn't think that notion of the spirit, the soul, even though
00:27:55
Speaker
I was raised and grew up sort of agnostic. My husband was a staunch atheist. You know, we came from Soviet Ukraine was atheist. Nobody celebrated anything. There were no Jews, no Catholics. We put up like a pine tree that looked like a Christmas tree, but for New Year to bring in the winter solstice. So there was no religion. So you were from a Jewish background that you left the Ukraine. But when you came to the U.S.,
00:28:18
Speaker
Yeah, or because you couldn't really traditionally you were but you couldn't actually practice got it. So when we came here, we became like, you know, the three day Jews for us, like we went to the three holy, you know, we celebrated holidays. And that's we sat down for, you know, for for Yom Kippur, we sat down for Rosh Hashanah, we sat down for the big holidays. And our kids knew that they were Jewish and they knew the history, but we didn't go to synagogue necessarily.
00:28:42
Speaker
We were very aware of our history, you know, we lost people in the Holocaust, we were traditionally Jewish, but we could practice if we wanted to. And we did we, you know, our wedding was under whatever. But
00:28:54
Speaker
But I always kind of was in agnostic because I said, like, I'm not committing. I don't know. Maybe I just know I'm going to live a good life and then hopefully it'll have a good outcome, whatever. But I always sort of, but I started exploring the idea of like the spirit, the soul at the time we were introduced to like
00:29:14
Speaker
mediums like John Edward and James Van Prague and I read their books. I was very interested in that concept of the spirit of the soul. And so when Emma passed and my girlfriend said, go see this guy, like he can't hurt. I went. But before that, even I was already connecting with Emma. I was already talking to her in my head and I was already receiving signs.
00:29:37
Speaker
that just blew me away. So by the time I saw him a month after Emma's passing, he immediately connected me to her. So I sat down, Emma was on one side of me, my grandmother who lived with us for 12 years, sat on the other side, the dog that we lost, everybody was there, like the whole machine, the whole family was there. He said,
00:30:00
Speaker
I'm connecting to this person and that person. He told me things that he couldn't have known had he read my whole Facebook profile. He told me things about my dog. Nobody knew about my dog. We lost a dog when I was pregnant with Emma, and the dog was Emma's soulmate. He told me things. I left his office, and I felt like he gave me my life back. I felt like, OK, there's a reason to live. There's hope. I connected with her.
00:30:30
Speaker
He told me things when I listened back to the audio that, because I wanted to do something as a tribute to her life, but I didn't know what to do. I know photography, I could do photography, but what I'm going to do is photography. So he said, I see a book.
00:30:43
Speaker
There's a book. Maybe you're going to write a book. I said, I'm not a writer. Like, I'm really not a writer. I'm an avid reader. I'm a voracious reader, but I'm not a writer. I'm a social worker. I'm a photographer. I'm different things. So when he said book, I see a book. I see a club. I see a group. And I'm like, I'm not a club person. Like, I don't want to belong to any club. That'll have me as its member kind of thing. Like, group, what group?
00:31:06
Speaker
So he planted that seed almost subconsciously because when he said book, I said, maybe I'll have to do a photography book. Maybe I have to go to her school and like offer my services as a photographer. You know, like their class photos were horrific. I'm like, maybe that's what I should do. Five months later, I find myself in my first writing workshop and that was the beginning. That's your club. My club. Never been to a writing workshop.
00:31:33
Speaker
And that was the beginning of my grief journey. I started writing in the first couple of pages that I read to the class. I got lovely feedback and I was like, all right, I got nothing to lose, whatever. If anything, it'll be a book for me, for my kids, for family, it'll be something like that. It doesn't have to see the light of day, but it helped me heal in the writing.
00:31:54
Speaker
I should also then preface that because I was still such a perfectionist, I said, if I'm gonna write a book, I have to do it right. So I have to take classes and I have to make- All the steps, all the steps. Yeah, you have to get a master's in English and- I was like, you don't need an MFA. No, you don't need an MFA to write a book. But I took a lot of workshops and I had a lot of editors read my manuscript. And until I was happy with this is perfect the way it is. This tells her story. Because when she passed,
00:32:23
Speaker
I was like, this can't be the end of the story. So I wrote the story. I wrote the book that I wish existed when Emma was born. There was no such book. And now I hear from readers and parents of special needs kids and they're resonating with it. And it makes me so happy because when I started writing, I started writing for selfish reasons, right? To heal for myself. And then it became like this larger thing. It became something that belonged
00:32:52
Speaker
to the world and to whoever needed to have it in their hands. So I'm grateful, so grateful for that part of it, that it's bigger than it was intended to ever be, right? Oh, so beautiful.
Understanding Grief and Spiritual Insights
00:33:05
Speaker
There are things that you've said in this interview that have really struck me, especially the beginning when you were talking about
00:33:16
Speaker
how you felt even as a new parent and having a child born not the way that you thought and that aspect of giving her up. I was thinking that that part when people as I know that even just as a mom can relate to that because
00:33:34
Speaker
for me becoming a mom there was grief even becoming a mom of the even the loss of the identity component of the who I was and then how I was so the fact that you are writing to a parent that is reading this as a parent of a special needs child that feels guilt of voicing that because when you voice the fact that you
00:33:58
Speaker
feel like inadequate in this new rule sometimes, you know, it can seem as if you're saying you don't love your child, which is not the case at all. We just even express how joy and grief can exist in the same space while the same with love, but it's still like, you know, so what a beautiful service you are doing by having written this book of giving a voice to these emotions that maybe others aren't willing to voice out. And when they read it to be like,
00:34:29
Speaker
like a sign of relief of like, okay, I am not alone. I'm not the only one that's thought that, oh my gosh, what happened? Like, why me, those whole things, you know, that might come into play of having your life look different than you thought it was gonna look like. So that just, it takes a lot of vulnerability and also just braveness to be able to voice that out. So I wanna just honor you for that, Diana.
00:34:53
Speaker
for sharing that here, but also, of course, in your book. Thank you. Thank you. I think it's important. Andrew Solomon, who's an author, wrote something very, or he said something very poignant, which is that there's no shame in feeling burdened by a healthy child, a special needs child, what have you,
00:35:19
Speaker
And also in my case, or in the case of being a special needs parent, imagining a different life. There's no shame in that, right? We all want something easy. We all want, you know, we all want an easy script. And it's funny because the medium that I can, that connected me with Emma, he said, you know, life is like a play, right? We all have different roles. And, you know, Emma's role finished.
00:35:44
Speaker
Right. And she walked off stage. She's backstage. But she said, you're still in this play and you may not like this part. You may not be embracing it. You may not have initially embraced this script. Like you want an easier script with easier lines, you know.
00:36:03
Speaker
I love this because I'm a theater major. So as you're saying this, I'm like, I can relate. I had never thought of the whole thing. Oh, she's backstage. She's still there. You just can't see her. She's back. I'm like soaking this up. She's like, you're going to, you know, may you live to be a hundred, whatever. You're going to need her. She'll be waiting for you backstage. But right now you still have a role to play. You still have your part. And you, and you have to do, you have to play your best part. Like you have to,
00:36:32
Speaker
do your best. So, so the thing that he was saying about, I'm losing my train, about the guilt of the burden, the part of burden and stuff, too. That's where this conversation. Yeah, that. Oh, so the thing that that I understand is that, you know, Emma had her journey, Emma had her role, I had my journey, my role, we agreed to
00:37:00
Speaker
we agree to something on a spiritual level. Like we came into a covenant saying that we're going to return to this physical realm and you're going to do this for yourself and I'm going to do that for myself. So we all had our individual journeys, but our journeys together, you know, to the effect like in this life you lost her, you know, in a previous life she lost you or you could have been sisters or you could have been, you know, different roles. So we, we do different things on this realm.
00:37:28
Speaker
this you know school earth school to elevate our souls right um you know to to evolve and that's our job um and you have to do your you have to play your best part right until your part is over and he that was such a gift for me the fact that i was able to connect with her like that because he even said like she's a very evolved soul like he's basically said
00:37:55
Speaker
that only an evolved soul can come back to this realm in such a limited way, you know, not being able to talk or walk or even eat by mouth, you know, but he said, she's like, she's like, this is why I do what I do. This is why I've been doing this for 30 years. Because he's like, whenever I do readings for such evolved souls, he's like, I feel like, you know, I'm elevated a few feet off the ground.
Receiving Signs from Emma
00:38:18
Speaker
He says, you know, you get like,
00:38:19
Speaker
That 16 year old that comes in and she wants to know if her boyfriend's her soulmate, you know, but then like readings like Emma, you know, and I was like, Oh my God, I love you. Like that. That's her. That was her. She was like, love incarnate. Right.
00:38:34
Speaker
So beautiful. And then the the things you learn from her you were talking about, you know, we all have our journey, but then the the role again, going back to the analogy of a play, when you are performing, you could know your lines completely, but how you are when you're acting alongside another actor, how they feed those lines to you does have an impact on how you read them back. So in life, her persona,
00:39:03
Speaker
And the part she played in your life had this big, you know, teachable moment. You mentioned about being present. So how has that now carried over now that she's not here physically, that reminder of the being present and being joyful, you know, and kind of living life in that moment. How do you kind of hold on to that lesson that you learned from her and your day to day?
00:39:33
Speaker
Um, that's a great question. Let me see how to best answer that. You know, the things that I put a lot of value on or emphasis on or importance on are not those things anymore, right? She taught me, um, the essentials of life. I think you had rabbi leader or letter on, and he said something to that, to that extent, like,
00:40:01
Speaker
You know, you learn what's essential in life and what's not so important. You learn that it's not so important that, you know, people, what people think of you. I mean, this was like I had a lot of anxieties coming out of, you know, being a new kid on the block in high school. And I carried that anxiety with me. And, you know, Emma sort of took away my pain, my anxiety, because my focus then was on her and making her happy and safe and so forth.
00:40:25
Speaker
Your perspective changes. Perfection takes on a different meaning. Perfection means something very different for me now. And the day-to-day, I see things for their true value, right? Because Emma taught me that there are gifts where you don't expect them. But something may look a certain way, but the truth is that there
00:40:46
Speaker
perfect the way they are. So I see that perfection in everything that I do, you know, and also I learned to be much more grateful. So I found gratitude, right, alongside the grief, which I never thought could exist together because like how, how can they write their polar opposites? They're not. They go hand in hand. They're, you know,
00:41:09
Speaker
Um, and, and gratitude is to be found in everything, you know, my healthy kids, the, all the signs that Emma sends me, um, you know, my, my work, uh, my, my family, like you see, you appreciate much more what you have. And that was the lesson that carries through now in life, much more so than it did when Emma was alive, because when Emma was alive, it was like, all right.
00:41:33
Speaker
Just get through the day, right? Yeah, yeah, yeah. The business of the day, of the to-do list, of the checking off, did she eat, did we put her on the bus, off the bus, feed her, right? The, the TV, yeah, all these little tedious things. Right, and there's no time to reflect, right? There's no time, it's just like, just let's get to the next day, let's get everybody
00:41:55
Speaker
to school, let's get everybody healthy. Let's get everybody, you know, so I would say like when you're in the eye of the storm, you don't really kind of see what's going on. But then, you know, after her passing and was starting to write, I was able to reflect and like see when the rubble settled, you look back on your life and you're like, oh, these were gifts. This it wasn't just like a whirlwind. It wasn't just like a tornado.
00:42:22
Speaker
We survived the tornado, we came out okay. There are now lessons to be learned, right? And what are those lessons for me? I mean, obviously my journey is very different from my husband's journey, who is an atheist and he believes different things, but he's very connected to Emma in his own way. And we sort of butt heads because like, how? I'm like, how? Because he's like, oh, this is bullshit or whatever. It's okay, don't worry about it. I'm like, you know what?
00:42:50
Speaker
If this, if this, you know, if I hadn't met the medium, I would not have written the book. I know that for a fact. And so for that alone, you should like respect my journey. Like you have your way of grieving and moving through the world and this is mine and respect that. And so now we're like, okay.
00:43:07
Speaker
We're on the same page where we learn not to talk about certain things. I learned all the signs that I get from Emma, which I was that was going to be my next question. If you wanted to share one of the at least what it may be, though you mentioned you had already gotten signs from her before you went to see the medium. So I was curious to hear some of these signs. Yeah, so
00:43:29
Speaker
I went back to work too quickly because I couldn't stay home. I saw her in every corner of the apartment and I was just like climbing the walls. I said, I need to go back to work. I need to
Work and Finding Meaning
00:43:39
Speaker
be distracted. And I happened to work in a field. I have, I work in early intervention, which is an entitlement program for kids with disabilities birth to three, like my Emma. So Emma was a recipient of these programs, physical therapy, speech therapy, occupational.
00:43:53
Speaker
And now I was in this role of approving these plants, like an IEP for an older child for these little ones. So my work was very rewarding because I got to give back. So I said, I need to go back. I need to start using my brain again. I need to be distracted from the grief. And so I went back to work too early. And my first day back at work was horrific. It was like,
00:44:16
Speaker
You know, every child that came in with like any parallels to Emma's diagnosis, I was like, you know, I was a mess. I went home the first day after work and I'm walking into my lobby and I mentally said to Emma, just let me know you're okay. Just, I don't know, give me a sign. I don't know what I expected. I said, just let me know you're okay.
00:44:38
Speaker
I walk into my apartment and there's a package from her school and I'm thinking it's extra clothes because she would like chew on her shirt. So we would always like send her extra clothes. I said they must be returning the extra clothes. I rip open this package. It's a framed photo of Emma.
00:44:54
Speaker
blown up and in this photo, she's poised for a kiss. So she used to blow kisses by putting her lips together and like making a popping sound like that. And in this photo, which the teachers took, I'd never seen this photo, she's poised for a kiss. And they blew it up and they put it in a frame.
00:45:13
Speaker
And this was my sign. She was letting me know she was okay. So by the time I saw the medium, he said, wait, did you connect with Emma already? Did you go see somebody else? Or did you connect on your own? I said, I connected on my own. I asked and she delivered. And that was the first sign. And after that, it was just like, I'm always talking to her. I'm always talking to her. I'm like, I always have a conversation. But you know what? She's, you know, she helped me write the book.
00:45:43
Speaker
hers were angel whispers because I look I read the book now and I'm like who the hell wrote this like I'm cracking up too because after the words angel whispers who the hell
00:46:02
Speaker
This looks like somebody legitimately, a writer, wrote this. That's so awesome. There's such mystery in that too. I know what you mean because when my sister passed away, my sister was 18 when she passed away, and I wrote, I say wrote, quote, unquote, a poem as I was driving home from college, driving back to my grandma. I lived with my grandmother for a few years while I was in college.
00:46:29
Speaker
in California, and I was driving back and I see the sunset, and I start just talking, but in the talk, talking as I'm writing the poem, as I'm like saying something, you know, it's in Spanish, but it's like I say something about the sunset. And then afterwards, like in the sunset, I saw your, you know, your, your reflection, you know, looking at me. And then afterwards, it's her voice coming in, like you, it's like her talking to me within my poem.
00:46:58
Speaker
So it's, you know, it was like, you know, it's like, oh, you think I've abandoned you, have mistaken you are like, I'm with you. Like, it's, but it's me. But it's her voice in the poem. You know, it's like a conversation within the poem. So things like that, like, I get because yeah, we have these conversations, we get these and then you kind of wonder, like, who wrote this? Like, I don't write, I'm not a writer. I'm a talker.
00:47:28
Speaker
Wow, so beautiful. Thank you. Yeah. And that was just like the first and then many more. And I think because you're open to it, right? I was open to it. So I was able to receive those messages.
Spiritual Evolution
00:47:41
Speaker
My husband didn't, even though I could see where it could have been interpreted differently had it happened to me. He didn't.
00:47:48
Speaker
But again, he had his own way. But yeah, so many signs. Like I'm driving in the car and I'm remembering her and I start crying and then this commercial comes on the radio. And it's an internet company and the name is Emma. So I'm crying and it's, you know, Emma, the internet company. And I'm like, okay, I get it. You know, I hear you, I get it. Or we are on a mountaintop in Utah skiing with kids and we bump into her orthopedic surgeon
00:48:19
Speaker
who operated on her years ago in Utah. And you live in New York City. Other side of the country, on top of a mountain, who was my favorite of her doctor. She had many. He loved Emma. I loved him because he loved Emma. And we bump into him on top of a mountain across the country. So many things. Or like I put in my GPS because I need to get somewhere.
00:48:42
Speaker
because I don't know where I'm going. And the GPS takes me past her school, like things like that, you know, that could mean nothing, but really to me, I feel like there are no coincidences. I would see all synchronicities and they mean something to me. And you know what? They give me life. They give me hope.
00:49:01
Speaker
Yes. And you know what, that's the thing with signs, like you said, it has to do with how it is that you feel when you see them, you know, the recipient feels and it's that comfort. And if they mean something to the person that's grieving and receiving them, and it's helping them, embrace them, you know what I mean? Run with those, you know, signs and emotions, you know, it doesn't, like you said, you know, not everybody
00:49:25
Speaker
feels like they need to have those signs to feel connected, you know, but some of us do it. So therefore, because we do, then we see the synchronicities and all these little things in life. Right. And for a long time when, you know, after I met with with the medium,
00:49:41
Speaker
And I would share my experience with, I was very careful, like who I shared with, because I still felt like, okay, this is talking about aliens. Like it was still like a foreign concept to me. And I realized that not a lot of people maybe believed in that, but the people that I spoke to, like religious people, spiritual people, they're like, Oh, of course, of course you connected. Of course this happened. You know, I was still kind of like treading life, like, well, they're going to think I'm crazy. But now I'm like, you know, I had like a spiritual awakening for lack of a better word. And
00:50:09
Speaker
It paints my life in a very different color at this point. Now I see things differently.
Parenting Different Children
00:50:15
Speaker
And that's so beautiful. Yeah. So beautiful, the lessons that are given. Let me ask you this, and then we'll talk more about how people can access your book and stuff. But how was it, you were mentioning of how different of a parent you were, of course, with Emma and then with the kids.
00:50:35
Speaker
And I can imagine like for children, siblings of a child with special needs, they have their own journey and their own story of how it is to grow up with a parent that has to tend
00:50:47
Speaker
a lot right to one child. So how did that also dynamic then shift also when Emma passed away like, you know, your role as a mom of this duality that you were talking about, right? All of a sudden, you only could be one type of parent, you didn't have to be this dual. Can you share about that if you may? Yeah, it's probably another essay I have in me that I have to write. I was a
00:51:15
Speaker
I was a better parent, I want to say, to Emma than I was to my healthy kids because, as I said, there were certain conditions that were placed on them because they had the mean, they had the skills, they had the potential, they had the agency over themselves, their thoughts, their actions that Emma didn't. So the bar was set differently. And with them, you know, like,
00:51:41
Speaker
for a great example, like Joshua, my son was always very small and I worried that he would be like a short man and then, you know, and I would take him like for these tests and the pediatrician and I would complain that he's short and he's small and if he ever loved the growth chart and what's gonna happen. And it was just craziness because he,
00:52:07
Speaker
So what, so what if he's a short man, whatever, you know? But like in my head, it was like, okay, we have certain standards we have to meet, right? The same came with like schooling and your education. And with my daughter, you know, later on, you know, I get an earful from her because, you know- What's her name, by the way? So it's Josh and- Yeah, Hannah. So Hannah, you know, Hannah, I made one comment to her, let's say when she was like a teenager about,
00:52:37
Speaker
the outfit not looking flattering. And she took this into this whole thing about weight and issues. You know what I mean? We're so ingrained in thinking a certain way, right? Society tells us we have to be a certain way. We have to fit a mold. Emma didn't fit any mold, but my kids had to because this is what society dictated. So I put all these issues and all these problems on my kids in terms of
00:53:07
Speaker
Expectations? Expectations, right. Expectations that were projections from me, right? Because again, we're reaching for perfection. We're always reaching for perfection. Meanwhile, perfection doesn't exist.
00:53:20
Speaker
And, you know, my kids are okay now. We have a good relationship. When I look back, I feel like a shitty parent. Like, I'm apologizing. Like, I'm sorry I made that comment. It wasn't meant to. But in my head, yeah, my son had to be tall. My daughter had to be thin. That was all sort of implied in my actions and my words, my deeds, and my kids picked up on it, you know? They're okay, thank God. I wasn't too extreme. But that was the difference. And I feel bad about that now.
00:53:51
Speaker
Um, you know, Emma, Emma taught me deep, deep acceptance and unconditional love. Um, and unfortunately I learned it after she passed, but at least, you know, and I'm still learning, I'm still struggling. I mean, my kids are still teaching me. My kids are so much more evolved than I am. Thank God. You know, they had a special needs sibling. So they're so compassionate and they're such,
00:54:17
Speaker
socially minded people, you know, they're always like fighting for the underdog for the less privilege for the marginalized, like their sister was. And I'm like, this is their gift. This is Emma's gift to them. So grateful for that. You know, we do the best we can as parents, like, right, we don't, first of all, healthy kids don't come with instruction, certainly not a special needs child. And so my husband and I, like, we did the best we could, you know, we, we, I think they turned out okay.
00:54:48
Speaker
That's
Accessing Diana's Memoir
00:54:49
Speaker
awesome. Thank you for sharing that. I don't know, but I think I think they're okay. That's awesome. Thank you for sharing that. Yeah, I asked the things that come up in my head like the I'm like that.
00:55:02
Speaker
Yeah, like a kid like that, you're talking like, oh, I want to ask about this. So sometimes I tell the guests, you don't have to answer. But like that whole thing with the dynamics of things that sometimes you don't want to ask somebody because you don't know if it's like too forward. So thank you for being able to answer that and sharing that with us so candidly. Now tell us about the book and how people can access it, Diana. How can we get Emma's story?
00:55:31
Speaker
Yeah, so Emma, you can buy Emma's left anywhere books are sold. You can buy it on Amazon, your local bookstore, you can even get it at the library or order it.
Embracing Life's Unexpected Gifts
00:55:44
Speaker
You can, on my website at dianacouperschmidt.com, you can see my events, read reviews, see what I'm doing next, see who I, you know, did a podcast with.
00:55:57
Speaker
my essays, my published essays, you can find there and also on Instagram at
00:56:04
Speaker
Pics by DK, P-I-C-S by DK, has my photography and has in my link tree essays and podcasts and that sort of thing. And I'll be putting all those in the show notes so that people can access it. And so if you go to your website, it'd probably be the easiest way to just access. Yeah, because I didn't mention at the beginning, you've written essays for the Huffington Post and other publications. Yeah. That's wonderful. Thank you so much. Is there anything I did not ask
00:56:33
Speaker
that you want to share with the listeners or any last words of during this podcast, not last words ever, but in this interview in this interview that you'd like to share with the listeners. I mean, your questions were great. I really it made me think I love that. I mean, the only thing I could sort of leave the listener with is that, you know, within my journey and what Emma taught me more than anything is that
00:57:03
Speaker
You can find gifts where you least expect it. And I think that was my biggest, for me, the biggest revelation in this whole journey. And, you know, we're still on the journey. Perfect. We all can find gifts where we least expect them.
00:57:28
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
00:57:56
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning in to Grief Gratitude and the Gray in Between podcast. Have a beautiful day.