The Unique Expertise of a Genetic Counselor - Helping Rare Disease Individuals and Families Navigate Through Complex Emotions and Circumstances Like Guilt, Grief, and Shame with Mary-Frances Garber

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get.

[00:00:43] Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] This is why Bloodstream Media produces podcasts, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit BloodstreamMedia.com to learn more.

[00:01:08] Hello! Welcome to the show. I'm so happy you're here. It means a lot to me that you're taking the time out of your day.

[00:01:14] If you haven't had a chance to catch the latest episode of Once Upon A Gene TV on the Disorder Channel, you gotta go catch that one. Download the channel for free using a Roku or an Amazon Fire.

[00:01:26] Our guest is super scientist Catherine Inston and founder of the new app called Variant. It's the app we're always like, why isn't there an app for this?

[00:01:34] You can share disease-specific information from medications, symptoms, side effects, resources, clinical trials. She explains it all in a deep dive on the show, so go check it out.

[00:01:44] I'm very much looking forward to introducing you to today's guest. Some of the angels on Earth are the one and only genetic counselors. Warm hugs, fuzzy blankets. I've met several of them, and they all have this soothing gentleness to them.

[00:01:59] I think it's one of those professions that is truly a calling. It's really amazing how much they do in their jobs, from knowing the science all the way to validating one's experience.

[00:02:12] She has a private practice called ListeningReflectingHealing.com, where she offers support to patients and families grappling with a diagnosis, carrier status, the diagnostic odyssey, grief, bereavement, all the things.

[00:02:26] She helps people deal with their emotional responses, and we're talking about a couple of those today, mainly grief, shame, and guilt.

[00:02:34] I'll have all of her info in the show notes, so you can contact her if you're in the right place to seek some of her services.

[00:02:41] She doesn't know this yet, but I'm really hoping to get her on as a semi-regular guest to go into some deep dives.

[00:02:47] So please give me some feedback after you hear this episode, and let me know if you'd like to hear more from my guest.

[00:02:54] Please welcome Mary Frances Garber.

[00:02:57] Hi, Mary Frances. Welcome to the podcast.

[00:03:00] Thank you, Effie. Thank you so much for having me today.

[00:03:03] Absolutely. Anyone who knows me knows that I have a big, giant, soft spot in my heart for genetic counselors, and I always refer to you as warm hugs.

[00:03:13] Oh, well, if I were with you, I would give you a warm hug, but here we are using our technology today, but it's still a pleasure to talk with you.

[00:03:22] Totally. I first was introduced to you because you're friends with a family that we both love, the Seidmans.

[00:03:27] Exactly. I heard Noah. I heard his podcast with you, and I've watched Noah grow up from the time he was a little boy until now. He is a grown man, and I was very impressed with the way he carried himself and spoke on your podcast.

[00:03:42] Noah's episode was so beautiful and honest. I love that guy so much.

[00:03:48] He certainly knows how to speak about being the sibling, and he was and continues to be a wonderful older brother to Benjamin.

[00:03:57] Yes. Agreed.

[00:03:59] Okay. Well, Mary Frances, please tell us about you and tell us about why you got into genetic counseling and how your career has kind of changed over the years.

[00:04:09] Absolutely. I majored in molecular genetics as an undergraduate student, and it was very impersonal. Not only was it difficult, but it was impersonal, and I worked in a lab, and I knew quickly I didn't want to do that.

[00:04:22] So at the University of Rochester, I went to career services and asked them, what can I do with this degree? And they said, do you know about genetic counseling? There's four of them across the street at the hospital.

[00:04:32] And that was my introduction to the genetic counseling practice. I did an independent study, and I got an A, which I hadn't done very often in college. And so then I went to Sarah Lawrence College, where the field of genetic counseling originated. I was very fortunate to get into the program and to train there for two years, and then to come here and work at Brigham and Women's Hospital in Boston.

[00:04:56] Wow.

[00:04:57] You know, I really wanted to be a medical provider, helping people understand genetics. And also I loved the counseling piece. And so I focused the early part of my career on high-risk obstetrics, helping people with prenatal diagnosis journeys. And then I took a time away from the hospital to raise my children. And I ran the New England Regional Genetics Group as the executive director.

[00:05:26] And then back to the hospital. And then I finally opened my private practice, which I call Listening Reflecting Healing, to complement what we do in the hospital, to provide ongoing supportive care to patients, parents, families who are experiencing whatever it is with their genetics, either during pregnancy or in pediatric settings or as adults.

[00:05:51] You know, it's less of ordering, it's not ordering tests or not even really explaining autosomal recessive inheritance, for example. It's really just me helping people process and navigate what they've been told.

[00:06:07] You know, I don't think most of us really know that that aspect of genetic counseling exists beyond you get your diagnosis, the genetic counselor explains it to you a little softer than the geneticist did, and then keeps in touch with you if they can, depending on your diagnosis and your insurance and your connection.

[00:06:27] You don't really understand that there are more areas and deeper ways of engaging with your genetic counselor in this way.

[00:06:38] Well, I don't necessarily know how many people are doing what I'm doing, but I just felt that, I guess I started to question.

[00:06:48] So what happens when they drive out of the parking lot at the hospital?

[00:06:53] Who takes care of these people?

[00:06:54] Who provides ongoing support while understanding the condition, the inheritance, the future?

[00:07:02] And so I just decided to sort of try this because I also wanted to see patients again without having to commute into Boston.

[00:07:11] And I wanted to see my patients for more than one visit or two visits.

[00:07:16] I wanted to have an ongoing relationship with them.

[00:07:19] I can tell that it is in your soul.

[00:07:22] I mean, you even knew that when you were in school and that you wanted to be closer to the patient and have that connection.

[00:07:30] And I just think that's so special and so important.

[00:07:34] And to answer your thought that you didn't ask a question about, nobody.

[00:07:37] Nobody's taking care of the families after they drive away.

[00:07:40] Nobody's kind of assisting them along their mental health and emotional health journey, really.

[00:07:46] It's very fragmented and almost impossible to find caregiver tools, really, especially the beginning times when you get a diagnosis.

[00:07:57] Well, and those days, those initial days of shock, disbelief, you know, forget adjustment or acceptance.

[00:08:05] There's none of that at the beginning.

[00:08:07] It's just we're in this bad dream and we're not going to wake up.

[00:08:11] And how are we going to step forward?

[00:08:12] And so some people do reach out to me very early after that diagnosis.

[00:08:19] And some people sit with it themselves for a little while and then reach out.

[00:08:24] And there's no right way.

[00:08:25] There's no right time to know when it's time to start getting some help and having somebody on your team or in your court that can really travel with you.

[00:08:34] And I've been privileged to travel with family members and even, as you mentioned at the beginning, friends, which helped me become a different genetic counselor.

[00:08:44] Having friends that experience this and, you know, being at their table and being in their home and backyard changes me as a genetic counselor, too.

[00:08:54] Because I really have a bird's eye view into, wow, this is really what happens.

[00:08:58] And that had encouraged me to look into doing what I'm doing even more.

[00:09:04] That's just amazing.

[00:09:05] What are some of the main themes that come up for you in your practice from your rare disease patients?

[00:09:13] You know, we learn about the stages of grief.

[00:09:15] And I think they're real.

[00:09:17] I think people grieve the typical child when they're given the diagnosis for their child.

[00:09:23] Even if they've been on the diagnostic odyssey and they know something's not quite right, there's a difference from knowing something's not quite right to being told your child has this or your child has that.

[00:09:36] Sometimes there's relief that we have a name to this now.

[00:09:39] We know is there a treatment or not?

[00:09:41] Is there a Facebook group?

[00:09:42] Is there a support group?

[00:09:44] And is there an alliance?

[00:09:45] All of these things.

[00:09:46] But there's also that shock of this is real.

[00:09:50] And we know now we don't have a typical child.

[00:09:52] And so there's grief and some despair.

[00:09:55] But people rise up out of that.

[00:09:58] Parents are phenomenal.

[00:10:00] And yeah, they struggle.

[00:10:01] You know, there's depression and there's days of anxiety.

[00:10:06] But for the most part, people and couples navigate this journey with their inner strength.

[00:10:14] And they become advocates and educators and fundraisers and peer supporters.

[00:10:23] And it's just unbelievable to watch.

[00:10:26] But we deal a lot with grief.

[00:10:28] And I guess sometimes there's also guilt.

[00:10:30] And I say when I teach the students that, you know, there are these two G words in my practice.

[00:10:37] I can deal with grief.

[00:10:38] That is easy for me to help people with.

[00:10:42] I don't mind crying with people and hugging people and encouraging people to get through grief.

[00:10:48] But guilt, that's a bad, that G word is bad.

[00:10:52] Because guilt is self-imposed.

[00:10:57] And it's hard for somebody to make somebody not feel guilty because it's self-imposed.

[00:11:05] That's really interesting.

[00:11:07] I feel like people are so afraid of the word grief or the existence of it.

[00:11:13] And they don't know how to even show up for it a lot of the time for themselves or for others.

[00:11:21] But I feel like guilt is not necessarily normalized.

[00:11:26] But it's, I mean, people say the word guilt every day, whether it's in joking or not.

[00:11:30] And it's kind of just a part of our language.

[00:11:34] And it's a part of our life.

[00:11:36] And you don't really think about the real feelings of guilt.

[00:11:41] And it's really complicated.

[00:11:43] And yeah, I've seen a lot of the self-imposed guilt, as you say it.

[00:11:47] And you don't really think about guilt as being self-imposed.

[00:11:50] Well, people can make other people feel guilty.

[00:11:53] There's parental guilt, right?

[00:11:55] So other people can make people feel guilty.

[00:11:57] But the kind of guilt that I think I'm talking about in the genetic counseling experience that

[00:12:03] I've had with my patients isn't coming from outside.

[00:12:08] It's individuals feeling guilty for a variety of reasons.

[00:12:13] And there are different scenarios that I experience with patients.

[00:12:16] But, you know, for some of this, because genetics is synonymous a lot of time with heredity

[00:12:24] and passing on the gene, passing on the non-working gene, people can feel guilty for that.

[00:12:31] And they make themselves feel guilty for that.

[00:12:34] And, you know, I would ask you, Effie, you know, what is the definition of guilt?

[00:12:39] And in what situations is guilt justified?

[00:12:43] And you can answer, or I can answer, but, you know, when is guilt justified, would you say?

[00:12:51] I would say guilt is justified when you harmed someone with intent.

[00:12:56] Yes.

[00:12:57] Or when you went, when you did something that wasn't aligned with who you are, and you know it.

[00:13:06] Right.

[00:13:07] I would say that is when I would feel guilty.

[00:13:09] Yeah, right.

[00:13:10] So intent, harm, and, you know, I think of breaking the law.

[00:13:17] I think of stealing something.

[00:13:19] I think of hurting somebody.

[00:13:20] You could feel guilt in those situations.

[00:13:22] But when you pass on a gene that has a variant in it that you don't even know that you have,

[00:13:29] or even if you know that you have it, we're talking about randomness.

[00:13:33] We're talking about spontaneous.

[00:13:36] We're talking about cell division.

[00:13:38] Our hands are tied.

[00:13:39] We have no play in that.

[00:13:41] We have no role in that.

[00:13:44] And so can we be guilty about that?

[00:13:46] Can we feel guilty about that?

[00:13:48] And I go through this with mothers and fathers, because truly, we think we are going to have

[00:13:57] a role in our reproductivity when we're young and starry-eyed.

[00:14:01] But whether or not we conceive and whether or not we pass on the working gene or the non-working

[00:14:08] gene, we have no hand in that.

[00:14:11] I hear a lot of different grief or guilt stories from families.

[00:14:16] And speaking of this one, when you feel that guilt because perhaps you passed something down

[00:14:22] that you didn't know that you passed down, and you feel this overwhelming guilt.

[00:14:27] And then a scientist, a geneticist, a counselor explains the science to you, and that in no

[00:14:33] way could you have known.

[00:14:36] Nobody gets a whole exome sequencing test before they have babies necessarily.

[00:14:40] Maybe hopefully they can sooner than later.

[00:14:42] But after you explain how it actually went down and someone still feels that overwhelming guilt,

[00:14:51] how do you help them?

[00:14:53] I sit with them.

[00:14:55] And I'm present.

[00:14:57] And I sit with them.

[00:14:58] And I listen.

[00:14:59] And we might go around the mulberry bush a few times about this.

[00:15:03] Because it's self-imposed and they're stuck.

[00:15:05] Like people get stuck in guilt.

[00:15:07] They get stuck in grief.

[00:15:09] They get stuck in the early stages of depression when they get a diagnosis.

[00:15:13] And all of these things are really being stuck.

[00:15:17] And so sometimes it takes time.

[00:15:19] And my hope is that people's eyes will open and that they will see eventually, if they can't

[00:15:27] immediately, that the guilt really is that the appropriate emotion?

[00:15:34] Is that the appropriate feeling for what's happened here?

[00:15:37] Because, you know, a lot of times I say to my patients, I want you to be good to yourself.

[00:15:43] I want you to be good to yourself.

[00:15:45] And you have enough going on that if you're making yourself feel this or that or whatever

[00:15:52] they're doing, I'd like to just encourage you to try to take a pause from that and see if

[00:15:58] you can put that down.

[00:15:59] Sometimes, you know, I ask my patients to journal and write very vividly and flowery.

[00:16:08] Write about the guilt.

[00:16:09] Why am I feeling guilty?

[00:16:11] And then I'm feeling guilty because blah, blah, blah, blah, blah.

[00:16:15] You know, teaching them how to write, how to take the feelings from their heart and their

[00:16:19] head and put it on the paper.

[00:16:21] I know that works.

[00:16:23] And it might take a long time.

[00:16:24] It might take writing it, ugly writing it.

[00:16:27] But I know that works.

[00:16:29] It works in lots of ways, right?

[00:16:31] Like just actually expelling it and putting it out there and not feeling like anyone's

[00:16:37] going to judge you for it.

[00:16:39] Yeah.

[00:16:40] And the word expel is great.

[00:16:42] That's one of those words that it sounds like what it is, expelling it, you know, releasing.

[00:16:49] I use the word releasing it, but I'll write down expelling right now.

[00:16:53] It does work.

[00:16:54] I do believe it works.

[00:16:56] And then I tell my patients to read it back, read it back in a month and say, oh my gosh,

[00:17:02] look, look where I was and look where I'm going or where I've come and see the growth

[00:17:10] and see the change.

[00:17:11] But yes, expelling, taking it from inside and putting it out.

[00:17:15] I like your sentiment on being kind to yourself, right?

[00:17:19] And after you would read something like that a little further down the road, maybe even a

[00:17:24] month, you do see that kind of awareness where you're like, how could I talk to myself

[00:17:29] like that?

[00:17:30] Yes.

[00:17:30] How could I treat myself like that?

[00:17:32] Or maybe even like imagine yourself as a little person and you would never talk to that person

[00:17:37] like that.

[00:17:38] Exactly.

[00:17:39] What about shame?

[00:17:41] How is that different than guilt when you're feeling ashamed of the thoughts you're having

[00:17:46] or you're feeling ashamed of the life that you have brought into the world or anything

[00:17:52] like that?

[00:17:52] How is that different?

[00:17:53] So when you first said shame, Effie, I was thinking shame.

[00:17:57] That doesn't come up.

[00:17:59] That really doesn't come up in my work.

[00:18:03] But then you changed it and you said ashamed.

[00:18:06] So sometimes people feel ashamed for thoughts they've had.

[00:18:10] You know, they want to be loving parents and patient parents.

[00:18:15] And sometimes they feel or think negative thoughts about their child.

[00:18:22] And nobody wants to do that.

[00:18:24] But that happens.

[00:18:26] It happens to parents of typical kids and it happens to parents of children with special

[00:18:31] needs.

[00:18:32] And, you know, I might say things like, we're all human.

[00:18:37] And we have thoughts and we have faults and we slip up and we're tired.

[00:18:43] And sometimes when you're tired and you're overwhelmed, you experience negative thoughts.

[00:18:49] And it is another situation that I think that they can sort of be random and not even well

[00:18:56] thought out thoughts.

[00:18:57] But you just might feel it or think it.

[00:19:00] And so again, being ashamed, sort of, you know, another way of synonymous with guilt.

[00:19:07] You know, is it really justified when you're trying to do your best, but because of your

[00:19:12] situation and because of what's going on, you might have some challenging thoughts.

[00:19:20] Yeah, I think everybody can nod along with that for sure.

[00:19:23] And I think the important thing there is to kind of rebalance if you can and remember that,

[00:19:31] yes, you are doing your best and it's hard.

[00:19:33] And nobody's perfect and you're bringing a different capacity every day.

[00:19:39] Exactly.

[00:19:40] Also, to bring it back to when I used the wrong word in the first place, shame instead of ashamed.

[00:19:44] I think about shame and I think about how many of us come to this world with little to

[00:19:53] no exposure to people with illnesses, people with disabilities and feeling like they weren't

[00:20:01] a part of our world and they aren't a part of real life world.

[00:20:04] And, you know, because most people just don't have that involvement for many reasons and

[00:20:11] feeling that ableism, right?

[00:20:14] Like, oh my gosh, I have to learn a whole new way of thinking.

[00:20:17] And how did I miss this?

[00:20:19] Exactly.

[00:20:20] It's really complicated.

[00:20:22] You're doing all of these things while you're doing all of these things.

[00:20:26] Right.

[00:20:27] Exactly.

[00:20:28] And that's why, you know, I can do so much, but I think peer support when families are able

[00:20:36] to find other families, mothers find other mothers, dads find other dads or whatever,

[00:20:43] with similar situations in their home, that's like the best medicine because more often than

[00:20:51] not, those parents have experienced some of the same thing of what we're talking about.

[00:21:02] You know, maybe they felt shame or guilt or grief or in this situation, just like you talked

[00:21:07] about the grocery store questions.

[00:21:10] And until you've been asked the question or stood next to your friend when they got asked

[00:21:16] the question and you're thinking, how is she going to answer that today?

[00:21:21] Until you've done that, you know, and been in those shoes, it's like a foreign situation.

[00:21:29] So I can do so much, but peer support is a very, very helpful and beneficial thing in these

[00:21:36] situations too.

[00:21:39] It's non-negotiable.

[00:21:40] I feel like for parents who are raising medically complex kids, I think that it's not sustainable

[00:21:49] unless you figure that part out.

[00:21:52] Can you explain to me maybe the difference or the definitions of grief and the trauma that

[00:22:02] you live with?

[00:22:02] And can one be treated more so than the other?

[00:22:09] Can you explain the difference between those?

[00:22:12] Interesting.

[00:22:12] Okay.

[00:22:13] So, you know, and I'm no expert on this, but I think grief is feelings of sadness and going

[00:22:20] through stages when you realize your situation.

[00:22:23] And if we're talking about a diagnosis or the passing of a child, you know, people experience

[00:22:29] grief to their loss.

[00:22:32] And when I say loss, I might even mean loss of a typical child, but the child's still living.

[00:22:37] And so there's, you know, denial and shock and anger and early grief mimics depression.

[00:22:46] People don't want to get out of the bed for a few weeks in that situation.

[00:22:50] They lose interest in things and all of that is fine, but shouldn't go on for more than

[00:22:56] a few weeks.

[00:22:57] People should start to resurface after that.

[00:22:59] So I think grief is feelings of sadness experienced in different stages and emotions and contrast

[00:23:09] that with trauma.

[00:23:11] I meet with a lot of people who want to have another child and they like are feeling that

[00:23:20] lightning has struck.

[00:23:21] And so they're traumatized.

[00:23:23] And so they're very, very fearful of trying again.

[00:23:27] In fact, they're so fearful that anything is going to happen to something else is going

[00:23:33] to happen to their partner, to their child crossing the street, to them.

[00:23:38] They've got like a PTSD.

[00:23:40] They are traumatized by the fact that these are the shoes that they're wearing now.

[00:23:44] So I think it's really different than grief because, you know, people usually process through

[00:23:50] grief and it comes in stages and it's more sadness and trauma is like scary.

[00:23:55] Trauma is like traumatized, like because this happened to us.

[00:24:02] This has changed us.

[00:24:04] This has changed our world.

[00:24:05] And now we're different and other things could happen too.

[00:24:08] I guess that's how I would answer that, Effie.

[00:24:11] I don't know.

[00:24:12] Yeah, no, trauma is scary.

[00:24:15] I like that description.

[00:24:16] And I wonder, can they exist at the same time?

[00:24:20] And are there levels of it?

[00:24:23] Like, do you feel like trauma, being traumatized and being in that fight or flight mode, do

[00:24:28] you feel like you can figure out a way to live there?

[00:24:31] Like a weirdo and not really be safe?

[00:24:35] Or do you feel like it's a place where you can adapt in also?

[00:24:42] Does that make sense?

[00:24:43] Yeah.

[00:24:44] I wouldn't want people to live in a state of trauma.

[00:24:47] I would try to get them out of that if they could.

[00:24:50] But, you know, anxiety plays in with trauma and anxiety is fear of the future.

[00:24:57] And so people become anxious about the health of their child, about the health of their other

[00:25:01] children, about future children.

[00:25:03] They're just anxious.

[00:25:04] They just get anxious about everything.

[00:25:07] And I think that sometimes what I'm learning is that our past dictates a little bit about

[00:25:16] how we're going to do in our present or our future.

[00:25:18] So some people with a past of anxiety, depression, eating disorders, alcohol abuse, they tend to

[00:25:29] need a lot more help.

[00:25:31] They tend to maybe feel more traumatized, maybe feel more anxious, maybe get stuck and need

[00:25:40] a lot more support going through this.

[00:25:43] Yeah.

[00:25:43] I mean, that and also just who you were before the event, right?

[00:25:48] Like what kind of supports you had growing up?

[00:25:52] If you had ever been in a crisis before, all of those things are going to probably play into

[00:25:58] how you react.

[00:26:00] Exactly.

[00:26:00] Or don't react.

[00:26:02] Exactly.

[00:26:03] People have said to me, you know, this happened when I was three.

[00:26:07] This happened when I was 10.

[00:26:09] This happened to my mother when I was a little girl.

[00:26:12] And we're talking, I'm talking about big life-changing traumatic events.

[00:26:17] And so then now they're in my care for what's ever going on with their pregnancy or their child.

[00:26:22] And so it's almost like, you know, experiencing another situation, but of equal intensity for them

[00:26:32] and having to have them grapple with that again.

[00:26:35] It's so complex.

[00:26:36] I mean, how does one manage in their bodies grief, trauma, anxiety, depression, guilt, fear, uncertainty,

[00:26:47] and also live a happy life, be an administrator, shampoo their hair?

[00:26:55] Like how does a human being do that?

[00:26:59] I don't know.

[00:27:00] I don't know.

[00:27:01] But people do.

[00:27:03] You know it.

[00:27:03] You know it.

[00:27:04] And I know it.

[00:27:05] And people do.

[00:27:06] And they're remarkable.

[00:27:07] And people are resilient.

[00:27:10] And I think that, you know, we have a choice every day.

[00:27:13] We're either going to stay in our sheets and not be happy and not take care of everybody in our house.

[00:27:21] Or we're going to try to do it and make a choice to live as happily as we can.

[00:27:26] And even families who have kids with complicated diagnoses, they're happy.

[00:27:32] And Noah talked about that, about what's normal for you is different from normal for everybody else.

[00:27:39] And the new normal in your family around your kitchen table.

[00:27:43] And so that's what people's happiness is focused on, what's normal for them and what feels good for them and what they can do day in and day out.

[00:27:54] Yeah, really, really bringing it down to the small bits and like the foundation, the actual foundation that's just your home and your life and your existence.

[00:28:03] And not letting any of the noise and the expectations and the lofty ideas of shoulda, coulda, wouldas and really just focusing on what can I do now.

[00:28:15] Exactly.

[00:28:16] You need a lot of reminders about that.

[00:28:19] That's hard.

[00:28:20] That's hard to do when you're in all of these states.

[00:28:22] Mm-hmm, mm-hmm.

[00:28:23] Do you have a favorite story that you think about when you think about a family who's either been through your practice or even before when you worked in the hospital that really changed things for you?

[00:28:39] Or did you see even them change so much and come out of something?

[00:28:42] Oh, I wish you had prompted me with this before we sat down to talk today because in 33 years of being a genetic counselor, there's a lot of people that I hold near and dear to me.

[00:28:58] You know, there was this one family at the hospital.

[00:29:02] I think they were one of my first patients, right?

[00:29:04] So I was a really young genetic counselor.

[00:29:08] I hadn't taken care of very many people yet.

[00:29:10] They got a prenatal diagnosis that the baby was going to have spina bifida.

[00:29:16] And I watched them grapple with that.

[00:29:18] And I watched them get information from children and learn about that.

[00:29:25] And, you know, the baby was going to be coming.

[00:29:28] It was a late diagnosis.

[00:29:31] And they were young.

[00:29:32] And I'm sure they were fearful, too.

[00:29:36] And they sent me flowers.

[00:29:40] And thanked me for being so present for them.

[00:29:43] I kept that little card from the florist that comes in the bouquet.

[00:29:48] And they came to visit when they took their child to Children's.

[00:29:54] And I could see her walking with some braces and doing okay.

[00:29:59] And when I opened my private practice, I reached out to them.

[00:30:06] And they were involved in an organization and running talks and groups for families who had children with spina bifida.

[00:30:17] And they asked me to come and speak to the group.

[00:30:20] And so I went up there and talked to that group years later and saw them as advocates and educators and fundraisers, like I talked about before.

[00:30:34] And just watching them rise to the occasion.

[00:30:36] And they have a handful of children.

[00:30:40] And every year I got a Christmas card with all of these children and that one child.

[00:30:45] And just seeing the progression of them as a couple and as individuals and of their child as well.

[00:30:54] I remember that.

[00:30:55] And I guess I bring them up because I think I didn't even know what I was doing back in 1989.

[00:31:04] But I learned a lot from them.

[00:31:06] And I learned about resiliency and strength.

[00:31:10] Because a lot of people get really scared when they're given a prenatal diagnosis.

[00:31:13] It's sort of different than getting a diagnosis for your child when you already have your child in your arms and have fallen in love with your child.

[00:31:22] As opposed to when it's prenatal and just everything is scary.

[00:31:26] Because there's no cuddly little baby that you're looking at sort of looking up at you and saying, it's okay, mom.

[00:31:33] That's a really good point.

[00:31:35] That was a beautiful story.

[00:31:38] My heart was warmed and I had a big smile on my face.

[00:31:42] And I love that you said you didn't even necessarily know what you were doing there.

[00:31:46] But your heart was there, right?

[00:31:47] And you can tell your heart is so warm just by the sound of your voice.

[00:31:52] But that they felt so seen and so informed.

[00:31:58] And like they had a gentle hand helping them.

[00:32:01] And then they become these amazing change makers.

[00:32:08] And they still keep in contact with you and look up to you and vice versa.

[00:32:12] I love that so much.

[00:32:14] Thanks for sharing that story.

[00:32:16] And I bet you have a hundred of them.

[00:32:17] You should make a collection.

[00:32:18] Oh, gosh.

[00:32:20] You know, there are a lot of patients who are near and dear to me.

[00:32:24] And some of them have very sad stories.

[00:32:27] But I've been privileged to sit with them and travel with them and support them and get to know their families very, very well.

[00:32:35] And, you know, that just that's it's just great work.

[00:32:39] It's really nice to be able to do something where you feel like, you know, even if you're just listening a little bit in a different way than other people listen to these to these patients of mine, it might make a difference.

[00:32:52] What would you say to the families who are listening, who are trying to support their member who just got a prenatal diagnosis or a diagnosis and don't know how to show up or what to do or what not to do?

[00:33:08] Mm-hmm.

[00:33:09] You're asking me, what would I say to people who are trying to support people who are going through something with a genetic issue?

[00:33:17] Mm-hmm.

[00:33:18] Lots of family and friends who tune into stories like this to figure out how they can show up for their sister or, you know, their best friend.

[00:33:25] Yeah.

[00:33:27] Yeah.

[00:33:27] So what I hear from my patients is that a lot of times they don't want to share their news, whether it's during their pregnancy or even as they're going through finding a diagnosis for their children because they don't want to be pitied.

[00:33:40] They don't want to get too many questions.

[00:33:42] They can't even answer the questions themselves.

[00:33:45] So if you're trying to figure out how to be for somebody who you love, just be there and try not to bombard them with questions.

[00:33:53] What did the doctor say?

[00:33:55] What do you think is going to happen?

[00:33:57] Did you go online and look this up?

[00:33:59] You know, did you tell mom?

[00:34:01] I mean, all of that is just overwhelming and they're already overwhelmed.

[00:34:07] So just sort of sitting with them, having a cup of coffee, listening, and reflect upon what they say to you.

[00:34:14] Next week, we're going for another MRI and we're really nervous about what we might find out.

[00:34:20] I would be nervous in that situation too, you might say.

[00:34:24] You know, just sort of validating feelings and just making them feel like you're just on their team without doing really too much more.

[00:34:35] Yes, I totally agree.

[00:34:36] Can you just be the new Once Upon a Gene in-house therapist for all of our complicated questions that we have?

[00:34:43] Could we have an hour with Mary Frances?

[00:34:47] Well, you know, this is a privilege for me to meet with you.

[00:34:50] And it's all because of that one, what I saw posted and wanted to reach out to you as a mother yourself and just, you know, be in contact.

[00:34:59] And, you know, once in a while, I just send emails to the leaders of different disease-specific organizations that I find online.

[00:35:08] And I say, if you need any help, you know, if you need a consultant or if you need somebody to give support.

[00:35:14] And then there's this thing called licensure.

[00:35:17] And so telehealth has made it very easy for me to see patients in many, many states.

[00:35:22] But if somebody needs counsel and they're in a state that has genetic counseling licensure, and I'm licensed only in Massachusetts and Florida, then I can't help them maybe if they're sitting in their state.

[00:35:36] If they're in a state without licensure, then we can talk.

[00:35:40] And so I guess what I would say is that if anybody's listening and you feel like you're struggling or you have a loved one who's struggling, you know, they don't have to feel alone.

[00:35:52] There are people to help support you, whether it be a social worker or a genetic counselor or somebody doing what I'm doing so that you can get just some reassurance, validation, and like some strength to continue on and to have your new normal.

[00:36:11] And how do people find out if their services work with your practice?

[00:36:17] Is that all on your website?

[00:36:18] When you say my service, if their services work.

[00:36:21] If they can have services with you from wherever they live.

[00:36:24] So people can just email me and ask, you know, or if you go to the National Society of Genetic Counselors, nsgc.org, there is a listing of states that have licensure.

[00:36:37] And so if you live in a state that's listed there, and it's not Massachusetts or Florida, then I can't counsel you while you're sitting in your state.

[00:36:46] But there are still quite a few states that don't have licensure.

[00:36:51] Arizona and Colorado and New York.

[00:36:53] Believe it, New York does not have licensure, which is amazing to me.

[00:36:57] So yeah, North Carolina, South Carolina, Texas.

[00:37:02] So, you know, there's a multitude of them that don't have that.

[00:37:05] But I just, you know, I just want people to feel less alone.

[00:37:11] I guess that's why I try to meet with people so that they feel a little bit less alone and so that the thoughts and feelings that they're having can be explored, either validated.

[00:37:24] You can't dispel somebody's thoughts and feelings.

[00:37:27] So you're either going to validate them or maybe challenge them in a way to see it from a different lens.

[00:37:33] Mary, I have so many other questions, but I've taken a lot of your time.

[00:37:37] Thank you for including all of that.

[00:37:39] We'll put it in the show notes for anyone listening.

[00:37:42] I, in the nicest way, hope that you get some competition and more genetic counselors take up practices to do exactly what you're doing because our community needs this so much for all of the reasons.

[00:37:57] But also, I've seen a shift just in the last couple years of talking with people every day and people want to talk about it now.

[00:38:05] And people want to open that door to the dark stuff that they've been feeling and they don't want to feel gross about it anymore.

[00:38:14] And it's almost like a little bit of an awakening, right?

[00:38:18] Like everybody's kind of ready.

[00:38:19] They're like, well, this is my life and I want to take control of it.

[00:38:22] Yes.

[00:38:23] Yes, exactly.

[00:38:24] Exactly.

[00:38:25] And it's okay to talk and it's okay to have those thoughts.

[00:38:29] And I think society has changing views on disability, changing views on mental health.

[00:38:37] And so we're talking a little bit about mental health is what we're talking about for mothers and fathers and parents, making sure that they're mentally healthy and getting them some support in that department is sort of what we're talking about here.

[00:38:52] And so I think you're right.

[00:38:54] It's good to talk.

[00:38:55] It's okay to acknowledge it and to feel like you're doing something for yourself.

[00:39:02] Yes.

[00:39:03] Yes.

[00:39:04] Well, thanks for being my guest today, Mary Frances.

[00:39:06] It was so nice to finally meet you at least this way over just email.

[00:39:13] And I look forward to hopefully connecting with you many more times.

[00:39:17] And be careful because now that you've been here, you're going to be sought after in lots of ways.

[00:39:24] Well, Effie, thank you.

[00:39:25] Thank you so much.

[00:39:26] It's wonderful to talk with you too and to get to know you.

[00:39:30] And I think you're doing a wonderful job all around.

[00:39:34] And this once upon a gene is very, very necessary so that people out there can hear other people speak.

[00:39:43] And maybe there's some words of encouragement that are provided through the vehicle that you're giving.

[00:39:50] Thank you.

[00:39:51] Thank you so much.

[00:39:52] All right.

[00:39:53] I hope you've been enjoying this podcast.

[00:39:55] If you like what you hear, please share this show with your people.

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[00:40:10] If you're interested in sharing your story or if you have anything you would like to contribute, please submit it to my website at effieparks.com.

[00:40:19] Thank you so much for listening to the show and for supporting me along the way.

[00:40:23] I appreciate you all so much.

[00:40:24] I don't know what kind of day you're having, but if you need a little pick-me-up, Ford's got you.

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[00:40:36] Thank you.