← A Place of Yes | A Grief Podcast 
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- [00:01]
Deborah Waffle
I started to think I might not be able to fix her. That was devastating for me. I felt like I failed her. She was getting worse, not better. We had tried everything that any doctor had suggested, procedures and medications. I started to think, maybe I can't fix her and she's going to live in chronic pain for the rest of her life. I didn't know how to accept that.
- [00:30]
Gabriel
Welcome to A Place of Yes, a podcast about how I moved through my darkest hour. And for me, that was in channeling my grief into good. Welcome to the show.
- [00:46]
Podcast Host
My conversation with Deborah Waffle was such a deeply emotional and powerful journey into the heart of a mother's love and resilience. Deborah opened up about the struggles and complexities of navigating her daughter Kelsey's chronic illnesses, as well as how she kept going after Kelsey passed away. A story that is both heartbreaking and inspiring. There was so much shared between us that we felt we had to break this conversation into two back to back episodes. So today we release part one, and we release it on Kelsey's 32nd birthday. For those of you on a grief journey, you understand the birthdays can be especially hard. They're filled with the ache of missing someone so dearly. But it's moments like this that remind us how important it is to know that our loved ones are not forgotten and that their spirit lives on. Happy 32nd birthday, Kelsey. You are deeply missed and forever loved.
- [01:47]
Gabriel
So I am here today with Deborah Waffle, who is author of the Grief Jar. Before being author of the Grief Jar, you were Kelsey's mom. And we are here today to talk about your story, to talk about Kelsey's story. You know, let's put it out there. Kelsey passed away. And when you are a mother of a child that passed, I sometimes think there's nothing harder. When I read your book and when we had a conversation before, I get from you such inspiration I get from you that you found the resources that you needed and you became the person that others were for you. You are now for them. But before we get there, can you tell my audience a little bit about yourself and a little bit about Kelsey?
- [02:29]
Deborah Waffle
Sure. I was a schoolteacher at an elementary school. Kelsey, my daughter, and Brendan went to the same elementary school that I worked at. So they were right there. And I retired a few years ago. Kelsey, at that young age was so energetic, just so full of life, and she was very creative and artistic. She was always making something and she would make cards and presents. She always liked to make something and give things to people and she loved to play sports. She played basketball, volleyball on the weekends. She would always have plans to have girlfriends over, and they would put on silly clothes and take pictures. At that young an age in elementary school, her medical conditions were affecting her, but not as drastically as when she got older.
- [03:22]
Gabriel
I read your book, and one of the things that stood out to me, and I think this will speak to a lot of people. So when she was two months old, she spiked a fever. And that in itself is just terrifying, right? As a new parent, especially when it's your first, because you're in charge of this little human. Right? And I think of that all the time when you're a new parent.
- [03:43]
Deborah Waffle
It was terrifying. I didn't really even know how to take her temperature.
- [03:47]
Gabriel
You don't even know what to do, right?
- [03:48]
Deborah Waffle
And didn't know what to do. And, of course, it was a weekend. My husband and I decided to take her to the hospital where she was born. You know, the doctor checked her all out, and it wasn't until she had gone to the bathroom, and they said that she had a UTI when she was 2 months old. That in itself for a girl, for a baby.
- [04:08]
Gabriel
Yeah, yeah.
- [04:09]
Deborah Waffle
Is common, but not at that young an age, I don't think. I don't really know. They just gave her antibiotics, sent her home. You know, it wasn't a big deal.
- [04:18]
Gabriel
It's almost in hindsight, right? Like they always say, what is Hindsight? Hindsight is 20 20. So you can look back and you can say her medical challenges or her, like, the complicated medical life started at two months. But you're right, you don't know that.
- [04:30]
Deborah Waffle
Right, Gabriel, you have antibiotics, she got better.
- [04:33]
Gabriel
Life goes on.
- [04:34]
Deborah Waffle
And just thought, hmm.
- [04:36]
Gabriel
So can you talk a little bit about when you started to recognize that some of these illnesses were becoming more frequent, connected, that things were not typical?
- [04:48]
Deborah Waffle
I would say when kelsey was about 5, she had her third UTI and she missed the first day of kindergarten, which was earth shattering to her. She was so excited to start school and go to kindergarten. By then she could express herself better and what it felt like. And she started to explain that it burned all the time when she went to the bathroom and that she thought for all people, it did because she had never known anything different. So she would go to the bathroom, and sometimes I would hear her go like, ow, ow, ow. When she was just going to the bathroom. But then she'd run off and play. And I didn't think that much of it at the time, but once she could talk and explain Things better. She said, oh, doesn't it hurt to pee?
- [05:38]
Gabriel
And I was like, yeah, thank you.
- [05:41]
Deborah Waffle
Because she just. She never experienced anything different. And so, of course, I did not think that that was normal.
- [05:49]
Gabriel
And that was. So that's kind of started and then things developed.
- [05:53]
Podcast Host
Right.
- [05:53]
Gabriel
And I remember in the book, you talk a little bit too about, like, you started to do your own research, which I think so many of the moms and dads in our audience, you know, when your kid is sick and you're not getting answers, you try to figure out the answers yourself. I wanna talk a little bit about that, but I wanna talk about you too. Cause I think you figured out what her primary illness became at that point too, right? Just by research. All of a sudden you're like, wait, this sounds like her.
- [06:17]
Deborah Waffle
Yeah. So when Kelsey was 11, she got her period. It was not a normal situation. And for some reason, I think getting her period triggered something that made her pain worsen. And so I took her to a gynecologist. He really did not have any solution, any recommendations, to be honest. He just seemed like she was overreacting with the pain that she was experiencing when she was 16. And in between 11 and 16, when he was not helpful, we went to a urogynecologist who suggested biofeedback. And that also didn't help. Any medication, and that didn't help. And then when she was 16, things really started to affect her life. Like she was getting up, going to the bathroom, and not being able to go to school for a couple hours. And then she was not going to the bathroom during the school day because she was concerned that if she went to the bathroom, she wouldn't be able to go to class. And when she was 16, I was so frustrated with the urologists and the gynecologists and the urogynecologist not giving us any path to go down, any solutions, anything that made the situation improve. I started just doing my own research and just. Painful urination. Painful urination. Trying to read about every single condition. And I just stumbled upon the word vulvodynia. Of course, I had never heard of that word. And actually I've never spoken to any other person know what it is, which is so surprising when you find out how really common it is. And I read the symptoms, and I just knew instantly, without a doubt, that that's what Kelsey had. And I was frustrated with the fact that we'd been doing this for, like, five years and no one had ever even mentioned that term. And so I figured find A doctor that specializes in that, which is what I did. He did the exam and said that she had a form of ovodynia.
- [08:25]
Gabriel
I always have a hard time with this, but I just think this is such a topic, regardless of what the issues are. But that speaks to some of our audience, because we're moms. We know our children. We know when there are things that are just not right. At the same time, we go to these doctors who we want to treat our children with the same care and respect and thought and listening and all of those things that we do. And so often, we can fall through the cracks. I just felt so frustrated for you, for you and for Kelsey. I mean, right. Because she's knowing something is wrong. You're knowing something's wrong, but you're not being able to figure it out. And if it were not for you and your research, who knows where that would have ended up.
- [09:07]
Deborah Waffle
After getting the diagnosis, I thought that we had an answer. And I never doubted for a moment at that point in her life, I never doubted for a moment that she was going to get better. That's how I saw it. It was my job to figure this all out and to fix her so that she could live a normal life.
- [09:28]
Gabriel
I can relate to that so much. Right. Because of the frustration of. It's like our job. Right? What is our job? Our job as moms, as parents, is to raise and take care of our children. And when we add these medically complex issues, it's so much harder. It's so much beyond the scope of really what we are.
- [09:46]
Deborah Waffle
Like you said, because we're not doctors.
- [09:47]
Gabriel
Because we're not doctors. We're not the ones. We carry that burden. We carry that responsibility. So even at this point, you're thinking, we're gonna figure this out.
- [09:55]
Deborah Waffle
Oh, I did not have any doubt because I wasn't gonna give up.
- [09:59]
Gabriel
With Kelsey, it almost seems like there was. You kind of make one step forward and two steps backwards.
- [10:05]
Deborah Waffle
I would research a doctor, a facility, and get our hopes up and think that this was going to be a solution. And most of the time, we would go to the doctor and they would recommend a medication, a certain form of biofeedback or a procedure like a spinal cord stimulator to block pain signals. And we would think, this is gonna do it, or we would leave and both end up crying in the parking lot. You both up, and we didn't get any new information. Like, we drove all the way to Cleveland Clinic in one day, drove there, stayed overnight, saw a couple of specialists Drove home that very same day was like just a whirlwind and didn't get any new information. We went to every major medical facility in Manhattan. We even got on a plane and went to Arizona, went to some doctors in New Jersey, went to Boston area. Just constantly hoping and then feeling like you just keep getting knocked down. And sometimes I would say that I would give up for a little bit. Like I would need a little break. And you could wait months to see a doctor, of course, and then to wait all that time and get your hopes up. And then both of us just feeling devastated, crushed, and then just needing a little bit of time to sort of recuperate and then be like, back at.
- [11:38]
Gabriel
It, back at it.
- [11:39]
Deborah Waffle
You know, okay, just have to find another doctor. And I. I was always trying to find a place that we could consolidate everything. That was like my dream to me. That just made sense. But that just isn't how it was. That isn't how it worked.
- [11:55]
Gabriel
That is frustrating. Cause no one's looking at Kelsey, the human, right, like, they're looking at the small, the individual specialties, or the individual pieces. At what point? And maybe this never happened. So I hope this doesn't come out the wrong way. But at what point did you start to think, you know, maybe she's not gonna be able to go to college? Maybe, like things are not turning around at the time?
- [12:16]
Deborah Waffle
No, I very much did get to that point. And I would say Kelsey was maybe 23, 24 when I started to think I might not be able to fix her. That was devastating for me because I felt like I failed her. She was getting worse, not better. We had tried everything that any doctor had suggested, procedures and medications. I started to think, maybe I can't fix her and she's going to live in chronic pain for the rest of her life. And I didn't know how to accept that.
- [12:57]
Gabriel
You went to the best doctors in the world, right? Like, I mean, you were everywhere in Manhattan. You went to Cleveland Clinic. It's not like you just went to your local general practitioner. You went to these great doctors, and they still couldn't fix her. So vulvodynia was not her only diagnosis over time. That's correct. Like, there were kind of compound illnesses, things that just kind of piled. Can you talk about that? Yeah.
- [13:22]
Deborah Waffle
I think vulvodynia was just a symptom of a much larger picture. When we talked earlier about her burning urination, and she would have flare ups where it would hurt for days, and we just called them flare ups. We didn't know what else to call them. Her symptoms of the burning urination would just get worse for a few days, days, and then slowly dissipate. And again when she was 16 and things started to get worse, she started having digestive issues and bowel issues. When she was a little bit older, like maybe early 20s, they discovered her pancreas had atrophied. And that really, really caught my attention because I was like, something has to be wrong.
- [14:13]
Gabriel
Like that just doesn't happen to a 20 year old.
- [14:15]
Deborah Waffle
A young person does not have their pancreas atrophy. It was so frustrating that people in the medical profession just seemed to shrug their shoulders like, you know, her pancreas atrophied.
- [14:30]
Gabriel
Yeah.
- [14:31]
Deborah Waffle
And doctors actually said to me, well, it's still working. Let's not worry about it till it stops working. To me, that just didn't make any sense.
- [14:39]
Gabriel
No, it doesn't.
- [14:40]
Deborah Waffle
Basically, a urologist was the first person to recognize that nothing we tried to help with her symptoms was working. The urologist said, I'd like Kelsey to see a neurologist and have her tested for small fiber neuropathy. It didn't make sense to me because small fiber neuropathy is most often associated with diabetes.
- [15:08]
Gabriel
So like a neuropathy, though, it's basically like your nerves are not.
- [15:11]
Deborah Waffle
Are damaged, are damaged. The typical onset is like in the 50s. Kelsey was like 23. Sure enough, the skin punch biopsy was positive and they said, oh, Kelsey has small fiber neuropathy. And at the time, I didn't understand as much about neuropathy as I did in the years to come. And you have small nerve fibers throughout your whole body, so it can affect any system. And Kelsey had no burning in her hands and feet. She wasn't the typical sat. She had early or the typical symptoms and she would be considered early onset. Like it wasn't. Again, just like the pancreas being atrophied. Having small fiber neuropathy at that young an age was not a normal thing. What we discovered as the years went by and the symptoms piled on with the digestion and the bowels and the urinary tract and her last summer difficulty swallowing was that her small fiber neuropathy was affecting her autonomic system. And that just wasn't typical.
- [16:16]
Gabriel
How frustrating, though, to have these two really large abnormalities, for lack of a better word. Right. Like an atrophied pancreas in your early 20s, onset of a disorder, disease that typically happens 30 years later. You would think those were red flags, Right? You would Think that someone somewhere would say, like, hey, one of these things alone isn't normal. Now we've got two. She also was diagnosed with cystic fibrosis. Or was that after.
- [16:42]
Deborah Waffle
Well, when her pancreas atrophied. The radiologist said, the only time I've seen a young person have pancreas atrophy is if they had cystic fibrosis.
- [16:52]
Gabriel
Okay.
- [16:53]
Deborah Waffle
So I was like, let's test her for cystic fibrosis. And they do that with something called a sweat chloride test. And both were positive. And I thought we found an answer. And then what was so confusing was, of course, I took her to a cystic fibrosis specialist. She had genetic testing that was negative, and they said she didn't have it. It wasn't until after Kelsey passed away that the mom in May and the researcher still was researching. I considered this, like, this huge mystery that I was going to still solve. And what I thought was just so interesting is I contacted the Cystic Fibrosis foundation, gave them information, and they said that with her early onset of this atrophied pancreas and the two positive sweat chloride tests, they would have diagnosed her with cystic fibrosis and that the doctor should have diagnosed her with cystic fibrosis.
- [17:53]
Gabriel
How did that make you feel? Did you feel like, okay, I have some vindiction, Almost like I have been vindicated, like, this is what was wrong? Or were you just mad?
- [18:03]
Deborah Waffle
It made me angry.
- [18:04]
Gabriel
Like, so mad.
- [18:05]
Deborah Waffle
It made me very angry because the doctor that did the autopsy, who then could visualize her pancreas, said, there's no way she could have been digesting meals with how damaged her pancreas was. And he said, why wasn't she on digestive enzymes for her pancreas? And people, the Cystic Fibrosis foundation said, oh, she should have been seeing a gastrodoctor that specialized in cystic fibrosis. So having people tell me that after Kelsey died made me very angry.
- [18:40]
Gabriel
I can only imagine, I mean, how unbelievably frustrating for you and for Kelsey to not have had someone who was able to see her whole picture. Do you have advice that you give or would give to families who are fighting that same fight, you know? You know in your gut when things aren't as they should be medically, Right. We're not doctors, but we know. And at this point, you know, so you have another child, right? So you have Brendan. And did you see differences? Right?
- [19:09]
Deborah Waffle
Because, oh, he was so healthy.
- [19:11]
Gabriel
So healthy. So you all of a sudden I do feel like when you have a healthy child and a sick child, you see the differences almost clearer.
- [19:19]
Deborah Waffle
More so.
- [19:19]
Gabriel
So what would you tell parents who are struggling or even individuals who are just feeling that they're not finding answers? Do you have any advice like, and.
- [19:28]
Deborah Waffle
Even if it's hindsight, again, after Kelsey passed away, I found a very interesting research study that connected small fiber neuropathy to all sorts of chronic pelvic pain disorders. And I just thought that that was very interesting. I wondered if when Kelsey was diagnosed with the vulvodynia, which has also been connected to small fiber neuropathy as a pelvic pain condition, if we had gone down the small fiber neuropathy path sooner, maybe could things have been different? So I think that if people are not getting answers that small fiber neuropathy is something that they're finding to be much more common than they originally thought. And a lot of things with Kelsey was quite a while ago. Like when Kelsey had the procedure for her type of vulvodynia, it didn't even have a CPT code. And today it does. The urologist who actually had Kelsey tested for small fiber neuropathy is the doctor who did the research study and connected chronic pelvic pain conditions to small fiber neuropathy. She went to Boston and she set up a chronic pelvic pain clinic with a team of doctors. Exactly what I wanted.
- [20:54]
Gabriel
What you wanted for Kelsey.
- [20:55]
Deborah Waffle
Exactly what I wanted. And again, I found that out after Kelsey passed away.
- [21:00]
Gabriel
You know, so Jake passed away when he was 4. And if he could have just hung on a little longer, right? If he just could have made it through, things were changing, right? Like there was meds that were changing. Maybe he would have gone on a med that made a difference. And I, you know, someone who is on our board and a dear friend of mine has a child who's now 22, you know, and doing well, and had a similar. When was young, when was Jake's age was really touch and go, you know, had some of that same thing, but through the grace of God, hung on and got some different meds and her trajectory changed a little bit. And so I imagine there's part of you that's like, thank goodness this team exists now in these clinics. But at the same time, it's just, it's gotta just hurt.
- [21:41]
Deborah Waffle
Oh, and you say about just holding on for maybe a couple of years. I kind of ran out of ideas and I had accepted the fact that I couldn't fix Kelsey and her very. Last summer, I always had her neurologist still try to figure out the cause of her small fiber neuropathy. They have this whole huge workup that they do. If you get diagnosed with it, it can be caused by so many different things. And if they can find what causes it, they can slow down the progression. They can, you know, but for about 40% of the people, they call you idiopathic, we don't know why you have it. I always felt that they would figure it out. It was just a matter of time. So I always ask the neurologist to do the workup every year or two. Kelsey's last summer she tested positive on something called an early Sjogren's profile, which has a very strong link with small fiber neuropathy. So that last summer I felt like I had all these new ideas. I just had, like, filled up the calendar and I became hopeful again. Even when Kelsey that her last summer was her worst time, all of her symptoms were the worst they had been. She was having trouble swallowing, her stomach always hurt. She was having problems going to the bathroom. I would try to encourage her, you know, oh, you're seeing, you know, four doctors. And that's why I call it a mystery. Could Kelsey, you know, have all these things wrong with her? Probably not, but, you know, was a mystery that needed to be figured out. We know she had vulvodynia. We know she had small fiber neuropathy. And then I feel like we needed more time with the cystic fibrosis and the Sjogren's. I just kept telling her to hold on. And then she passed away about a month before. We were seeing the Sjogren specialist. And when I called the neurologist, it was nine months to wait to see him. Nine months. And so that was very frustrating because I wanted to immediately try the infusions.
- [23:56]
Gabriel
Yes, you want to get right in there. I mean, it's almost a year. It's wild. Talk to me about. So that last summer you said Kelsey, it was her hardest. All of the symptoms were. And how old was she? She was 20.
- [24:09]
Deborah Waffle
29.
- [24:09]
Gabriel
29 at this point. I know you've talked about in the book a little bit where she had jobs but was not really able to sometimes sustain a job because of her pains and her doctor's appointments and all of these things. So at this point, though, she had. She lived on her own. But can you talk about what her life was like then?
- [24:26]
Deborah Waffle
Yes. So she was probably deemed disabled, maybe around 25. And her pain was worse at night. And so she tended to be Awake at night in pain and then sleep during the day. Those last couple of years, when I realized I couldn't fix Kelsey, and I started to think that this was going to be her life, I started to think, what's going to happen to her when I'm gone? And I started to worry so much about that. And so I was trying very hard to help her learn how to become more independent, how to take care of herself, how not to rely on me so much. So my husband and I renovated a house for her when she was about 27. And that last summer, everything just. When I say everything got worse that winter. She just didn't do very much. She was very isolated. And so that chronic fatigue, which is a symptom of small fiber neuropathy, is chronic fatigue. She had to that once the weather got nice, that she would be able to do a lot of things like we had done the summer before with her. And then the summer just came and she was just so sick all the time. So sick. And the entire summer got away from us.
- [25:48]
Gabriel
It's hard. That's hard on you guys. That's hard on her. Did you, at any point through that winter or through that summer, did you. Did you think she was gonna pass away or did you just think you were gonna keep on?
- [25:59]
Deborah Waffle
Nothing that anybody ever indicated. I can't say this enough, never, ever occurred to me that her symptoms could cause her to die. Not to my husband, I would say, not to her doctors. It was never even a consideration. Basically what happened is because she had such difficulty going to the bathroom with the severe constipation, and we had just been to a gastrodoctor five days before she passed away. When they did the autopsy, they said that what her actual cause of death was a bowel impaction. And they said that the bowel impaction stopped food from being able to pass through her system, which caused her to aspirate. So she had a bowel impaction, she vomited. Yeah. Had nowhere to go.
- [26:51]
Gabriel
And she was at the doctor five days before.
- [26:54]
Deborah Waffle
Five days before.
- [26:56]
Gabriel
Theoretically, that should have been noticed, right?
- [26:59]
Deborah Waffle
Yeah. The bowel impaction had to have been there, had to be there.
- [27:03]
Gabriel
That doesn't just turn that severe in a five day period. It's already on the road to being right.
- [27:09]
Deborah Waffle
And so I really don't know. They did say that it was an unusual location. I don't know if that's maybe why it wasn't detected five days before. She also had gone to a local emergency room a few times in that last maybe five Months, telling them that she was in severe pain, and, you know, they would just send her home. I honestly think that a person, a healthy person, that night that Kelsey passed away, would have realized something is seriously wrong with me and have gone to the emergency room. She was so accustomed to being in pain, to being told, you're okay, there's nothing we can do that I honestly think that she thought, don't go to the emergency room. Don't ask mom to come over. This is just the way it is. And I think that if she hadn't lived that way, she would have asked.
- [28:09]
Gabriel
For help, done something. How do you come to terms with that? I mean, as moms, right? It's so hard because we would do anything to undo what we're living with. Jake died essentially on my lap, on my watch. So I, you know, I have those same. What if? How could I, you know, like, they can break you if you let them. How do you deal with that? How do you handle that?
- [28:30]
Deborah Waffle
I would say that in the beginning, I totally blamed myself, and I think that that's probably very common. Totally blame myself. Kelsey told me something was seriously wrong with her. I told her she was fine. I didn't go to her house that day. Her saying that she was in a lot of pain and couldn't go to the bathroom was something that happened all the time. But the day before she passed, I almost went over to her house so many times. I was in Albany, and I almost went to her house. And then I went home and I almost went to her house. Of course, I know from my phone that it was 8:37. Of course, I'll never forget that it was 8:37 that night when she picked up and she said, mom, I'm in a lot of pain. I love you. And she just hung up. And of course, hearing that, probably so many moms are saying, well, I would have raced right over to her house. This was something that happened frequently. And she always wanted to be by herself. And I almost got in the car and I thought, what am I gonna do? She's gonna be up all night trying to go to the bathroom. I'll see her tomorrow. And I went to bed.
- [29:42]
Gabriel
I still probably didn't even want to aggravate her because, you know, she wants to be alone. Like, there's just so many. It's impossible. It's impossible.
- [29:48]
Deborah Waffle
And so, of course, I think. And you went to bed. And sometime during the night, she passed away alone. And of course, I'll wonder if I'd gone over, would things have been differently.
- [29:58]
Gabriel
I am so sorry. I'm so sorry for your loss, and I'm so sorry for those feelings, you know, and it's an impossible thing to move through or past, right? Like, we just live with this now.
- [30:17]
Podcast Host
Don't forget to come back next week for part two of my conversation with Deborah. Her story is one of unbreakable love, immense strength, and that unbreakable bond between a mother and child. See you next week.
- [30:33]
Gabriel
Thank you for listening to A Place of Yes. Please follow us wherever you listen to your podcasts. If you really like this episode, please share it with a friend. It would make a world of difference if we could just reach more people and share the work that we do and the stories we want to tell. Thank you so much for watching.