Alex reflects on her experience following her young child's PSC diagnosis

Alex discusses her journey up to and following her young child’s diagnosis of Primary Sclerosing Cholangitis. She reflects on her reaction to the diagnosis, how it affected her relationships, and how she was able to move forward and face her child’s altered future through community and advocacy for a cure for PSC.

Transcript

Alex  00:10 It's not perfect, for a lot of people and families with this challenge or other challenges, but it doesn't, it doesn't mean that that it's not still a wildly beautiful life.

PSC Mami- Monika  00:31 Welcome to PSC Mami where we share stories at the intersection of PSC and Parenthood, PSC or primary sclerosing cholangitis is an autoimmune disease, where the immune system gets the wrong message to attack its own bile ducts. Over time, inflammation leaves them scarred and blocked, which eventually shuts down the liver. And surprise, the liver is in charge of over 300 functions in the human body. To be diagnosed with this rare, unpredictable and incurable disease can rewrite anyone's life journey, including their vision and experience of parenthood. A reminder that all stories and information shared our personal experiences and opinions and should not be used as the basis to treat yourself or others.

PSC Mami- Monika  01:21 I still get emails from women who are deeply impacted by the stories that have been shared here on the PSC Mami podcast. I have heard from families and friends about their deeper understanding of the experience of their PSC peers, because of the stories that have been shared, even if it's not their loved one talking. These are not my stories. These are the stories of PSC peers, like maybe you and each story is unique and has the ability to impact someone else who might be feeling alone or defeated or wondering if anyone else has lived an experience with PSC that they have. You have lived that story, and I welcome you to share it. I'm also expanding the scope of the podcast if you are a father who has PSC if you're the spouse of a PSC or if you are a parent of a PSCer, or I'd love to hear from you. Of course, women who have lived the PSC and parenthood journey including surrogacy adoption, fostering fertility treatments, all the journeys, I truly believe someone will benefit from hearing your story, contact pscmami.com/stories or send me an email at PSCmami@gmail.com.

PSC Mami- Monika  02:40 Now let's get to today's interview. We are expanding the scope of perspectives on the podcast today. While there are still many different paths that young women with PSC take when it comes to the question of parenting. And yes, we still want to hear your story. Today we are looking at what the intersection of PSC and parenting is from the viewpoint of a parent with a PSC or we're hearing from Alex the mother of a young PSC who lives with her husband and three children in Boston. We have chosen to use an alias for her to protect her children's privacy. Welcome, Alex. And thank you for joining us to share your story.

Alex  03:27 Thank you for having me, Monika.

PSC Mami- Monika  03:28 So tell us a little bit about how PSC came into your family's story.

Alex  03:35 In the late winter of 2018, just ahead of my son's fourth birthday weekend, he started having an illness that seemed to me to be very strange. He had a lot of really significant abdominal pain and a fever that would come and go on several trips in and out of the pediatricians office. I asked if they might be willing to run lab work. And they were, though they also felt it was viral. There was nothing else going on at the time that indicated anything, you know, more serious. And so we sort of ran a whole bunch of different panels on him. We had his birthday party and he was intermittently in pain and not in pain. And so it was a it was a really uncertain several days and my in laws were in town for his birthday. And we had the labs drawn on Sunday morning. And on Monday morning, I had driven my in laws to the airport to see them back to their hometown. And I was walking into my office at 730 in the morning and my phone rang and it was the pediatricians office telling me your your son's liver enzymes are elevated and they started talking to me and I even now I know exactly where I was on the street corner outside my office. They remember kind of leaning against a building first second, trying to make sense of what they were telling me. And so I and I said, Wait, wait, whoa, is this really serious? What should I should? Should I turn around and go home? Watch it? And they said, Yes, we're gonna make you an appointment. We live in Boston, the Boston area, and they said, we're gonna make an appointment at Children's to go in and get an ultrasound. So I said, Okay, and I turned around and went home, had my son home from school, we took him in for an ultrasound appointment. Some hours later, I had this really uncertain day where we were waiting to hear back, you know, what sort of the result of this was after this bizarre illness. At 530, in the afternoon, they called us and said, you know, looks like looks like just some thickening in the liver that might be indicative of a viral hepatitis, you know, this is probably a self resolving thing. And we felt reassured by that. And the plan at that time was like, let's keep an eye on the lsps on an ongoing basis and run those that bloodwork every week or two weeks, or a couple, you know, for a month or so and just see what's going on, as long as those enzymes are trending down towards normal, should be fine. So that's what we did, we, we kept doing this lab work and numbers seem to be moving in the right direction.

Alex  06:19 We were a little a little freaked out by the experience. And my son was had a couple, you know, stomach illnesses over this time period. At one point, we ended up stopping in the ER. And eventually things sort of settled down. And we thought that the the liver issue was resolved, some more period of time went by. And later in the spring, again, we thought the liver issue was behind us, we noticed that there was blood in his stool, and we immediately, you know, called up the pediatrician and ended up bringing a sample over there. And they tested it said, no, no, it's it's actually negative for that. And we were just, my husband and I, were looking at each other thinking, you know, oh, my gosh, we must be we're just so hyper vigilant because of this whole issue that had come up, still had us a bit shaken. You know, we must be knots or something. We're seeing things that aren't there or whatever. But within a couple of weeks, it became apparent that, you know, no, no, that really was there. And we were, we were back, you know, in the doctor's office. And at that point, we had actually already scheduled an appointment to go in and see the GI team at Children's in Boston. Now, we were focused a little bit more on the GI side of things. And we thought it was a meeting just to kind of cross our T's and dot our I's and make sure that the liver issue was fully behind us. And now to uncover whatever's going on with his GI tract. We went in there. And in fact, because he had been doing so well, I had even moved that appointment. Like I remember I had it scheduled for mid June. And then because he was in school, I thought, well, I'll I'll move it to when he's done with school, so it doesn't interrupt his school day. And we went late in June to the hospital. And I actually remember the date because I have a picture of myself with my I have three children, as you said, but then I had only two so far. And I had an arm around both of my boys at the time, they were kind of watching a video or something before bed. And I this picture in my mind become really emblematic because it was like the last picture of my former life before we had this appointment.

Alex  08:34 The next day, unbeknownst to me, so we went in and had our appointment and met with our team. And they reran all the bloodwork to just triple check on the liver and see what was going on. And of course, a little later in that day, we got the call that the that you know, the bloodwork was all wacky again, and that this was you know, this wasn't viral thing and now we had to hunt down what it was basically within 10 days or so, leading right up to July 4, we had additional testing, we had the endoscopy biopsy colonoscopy, and we're and had learned of this PSC diagnosis along with the IBD diagnosis as well that accompanies so many, you know, accompanies the PSC diagnosis and so many patients. So that kind of led us to, you know, to that conclusion.

PSC Mami- Monika  09:27 That has a lot to go through with little ones. What was it like to accompany him through all those, you know, from the very first blood pricks all the way through those bigger tests. What was it like for you, how did you come for him as you're dealing with your own uncertainty?

Alex  09:47 That was very challenging aspect of the diagnosis period for sure. And I will say that as hard as it is to have a have a child so young go through something like this. One thing I was grateful for was that he was not aware of the weight of kind of what we were dealing with at the time. So that was really our burden to carry. And he was in the moment. That as you said that you know, all the pricks, I remember the first time we when we got his blood work at that first appointment, he walked around for two hours after with his arm held over his head, you know, kind of on again, off again, whimpering like all day, got my arm and it hurts so much, I can't even use my arm. Gosh, you know, it's been just over a year now. And I mean, a lot has transpired. But even within a couple of months, he was like, handling it, like a champ, you know, had just gotten really used to it, which is both, you know, amazing. And also, at times heartbreaking, because you think they shouldn't need to go through that kind of thing. A big challenge was keeping our emotions in check. And yes, comforting him in the moment being with him every step of the way, and kind of focusing on you know, we're doing this together, we're with you, which was at the time because again, he was barely four, it was enough for him. And then when he wasn't, when he wasn't at a doctor's appointment or in the hospital, he was happy, you know, he was good. He was like back back in action. And whereas for us, you know, that once we were on this path, that worry really hung for us in our minds, you know, waited us down, thankfully for him, you know, because of his age that that wasn't the case.

PSC Mami- Monika  11:38 And how has he been doing since the diagnosis?

Alex  11:43 Thankfully, he's been doing really well. So our story to date is really more around the mental challenge of the diagnosis period, and of getting going on treatment and the monitoring, which you know, all of the lab work and the tests and things like that, that are certainly no fun for anybody never mind a four year old, or a five year old, he's five, now he has physically been doing really well. So we're really grateful for that.

PSC Mami- Monika  12:15 And four to five is set. I mean, my son is four and a half. So I know that four to five is such a huge developmental leap of like awareness of the world and awareness of self has his awareness shifted, and kind of how is your approach to guiding him through this process shifted as a result?

Alex  12:35 Yeah. You know, it is it hasn't changed. I mean, he's certainly aware of it. I mean, he was aware of it, I suppose, when we started as well. But for him, it's now he's acclimated to this as part of our regular schedule, there's so many different aspects of it, you know, we spent the better part of a year basically trying to get the IBD inflammation under control, it took a while it took a lot of trials, you know, lots of different things. And of course, we have our regular appointments to go in and run lab work. And the MRI, you know, the mrcp, which for a child at that age, they put you under anesthesia to do that. And hopefully in another couple of years, he'll be able to do that without but there's lots of those types of things that have consumed a lot of days and time and doctor's offices and things like that for him, you know, he's aware of it, what he's not yet aware of, is that it's not something everybody does. And so we try not to make it a bigger, not that we're not making it a bigger deal. We just try not to make it more than what he you know, than where he's at as far as understanding these things. And he's aware, of course, that he takes medication, he actually knows exactly what he takes, what time of the day what his dosage is. He's kind of a mature kid in a lot of ways. And so he was curious and interested in those things. And will we answer all of his questions? We just tried to do it in an age appropriate way.

PSC Mami- Monika  14:09 And how did you navigate figuring that out? Like, how did you navigate? I know that's a question for a lot of people what is age appropriate when it comes to medical stuff?

Alex  14:18 Gosh, tell me about it. I know, I know, and I had such a hard time. I have a friend who is a trauma psychologist for children and she had a conversation, I had a conversation with her. She was kind enough to have a conversation with me when we were in the throes of kind of going through all of this and wrapping our mind around this. And she really helped me to develop a vocabulary and a language around this for him to be able to describe you know what your your liver you know, your liver does people for people that are born, perhaps like him with special qualities in their liver may need certain monitoring, you know, your liver is like, you know, your, your body's dump truck. And so we talk about it in this fashion. And, you know, he asks, perhaps the question around this, then we will, you know, we answer him, but we don't give him more than what he's asking for. And I hope that our dialogue around this will grow as he's interested in it and curious. I want to make sure it's always open, and that we're always talking about it. And he otherwise seems, you know, comfortable with the fact that we're, we were doing all of these things together. You know, that's one thing I've always told him, you know, whenever, whenever we have to do these things, as unpleasant as they are, and you know, prepping a very young child, or something like a colonoscopy is about as unpleasant as but doing, you know, all we can tell him is, we're going to, you know, I'm going to be here with you, I'm going to do all I'm going to do this with you, and you're not going to be alone, ever, he is comforted by that, thank God, and hopefully, always will be along with the rest of the dialogue that we'll have as he grows older, and can really talk about it.

PSC Mami- Monika  16:16 I really love that language of the dump truck. That is so incredibly age appropriate, and very lucky to have someone to sort of help you figure and navigate that language.

Alex  16:27 Yeah, it's, it's so important. I think one thing that has become really clear to me going through this process has been how important it is to spend the time vetting things like that away, you know, away from your child in a space where you can, you can think that through and have a dialogue with someone who, who can help advise on things like that, I also think therapy is a wonderful thing. You know, this is a, I'm sure, for many patients that go go through this, it's just it really can be disruptive to your life and kind of the experience that you're having, you know, I sort of liken it to, you know, you're, you're on a train, but it kind of kind of skips tracks, and all of a sudden, you're on a different track, you know, you're everything's still the same around you, you're looking out the window, and everything's still moving, it's still the same. But your experience is all of a sudden, very different. Being able to work through those things, is really important. You know, for me, I think of my life, and I have these very distinct memories of going through this diagnosis period, whether it was being called that morning that I was standing on the sidewalk outside my office about the lab work, and it sort of all began to me, in my mind. I mean, I remember having a conversation with one of our doctors, shortly after diagnosis, standing in my yard, talking and saying, you know, I feel as though you're telling me my child has a terminal disease, you know, talk to me about this, explain this, to me, answer my questions I had, I was so lucky that I had this amazing team of doctors and one individual in particular, who took a lot of time to talk through a lot of these things with me. And that was enormously helpful. But I really I think of my life that's like your, you know, you have your pre sort of diagnosis life before this touches your family, then there's a period of time in my mind that kind of gray because it was like that time period where we knew something was wrong, but we didn't know quite what was wrong. And we were going through this testing and, you know, on this roller coaster of feeling falsely reassured and then finding out no, actually, it's not resolved, you know, and what is it and going through all of that. And then it was a really dark time for me for a good six weeks or so following kind of diagnosis when I was really trying to get my arms around, what is the mean, and what's going to happen? You know, how is this going to play out? We're actually right. When we went through that period of diagnosis, we were leading right up to a extended family trip that had been long planned, celebrate a milestone birthday, and it was just the worst. You know, it's just the worst timing because it was literally days after finding out and we were medically cleared to go and all of that kind of stuff. But my head was just not, you know, I was just not screwed on straight. I mean, I was like, in a very dark place for a period of time. And then when we got back from that trip, and when I had time to kind of dig into some of these things. That's when I began to find resources. That's when I found the patient community on online through that Facebook group. And I'm not particularly somebody to join, you know, Facebook groups. But I think God, I found that and then I sort of started to come out of, you know, out of that dark place and, you know, kind of be able to reorient myself and recalibrate my world a little bit. And that's been you know, it's gotta lay in that space since that time period of kind of getting better and getting farther down the path.

PSC Mami- Monika  20:06 I really love your imagery of the switching tracks and things being the same, but different. How did having the diagnosis of PSC, shift your parenting? Like, are there moments you are conscious of that? Being on a different track actually has you parent differently?

Alex  20:25 I am certain that it does. You know, it's, it's hard to describe all the ways. I mean, it changes parenting, it really changes. A lot of things. I know, MoniKa, you've referenced it as sort of a forced zen, right. I think that's what you call it with PSC sort of does and, and I will say that, you know, I can, I can appreciate that I I'm in, I'm in a planning profession. And I like to plan I like to anticipate I'd like to be ready. And that's something that's just not possible with PSC. So learning to live in that moment. And it's such a cliche thing to say, but I think honestly, it'll take me the rest of my life to figure out, you know how to do that better. I tried very hard to enjoy things in the moment, you know. My son is doing well, and I'm more, I am more apt to play on, perhaps that vacation or weekend away, do more, you know, I took him to go see the Nutcracker last year for the first time, and he was probably a bit young. But that's okay. He loved it. And I just I want to make sure, again, I don't, I don't say that with the anticipation that suddenly you won't be doing well, but because we have to, you know, focus on times that, that he is well, and that things are going well, I think these are the important things that I try hard to do that kind of stuff, you know, also your, your worries change, you know, as a parent, and he was my first then since I've had two more, right, but um, you know, as a parent, you kind of worry about everything, if the all those viral parenting stuff that goes around, and you're, you're worrying about all of these things, but they all are remote sort of possibilities. And you know, and now you sort of have this thing to really focus on the real, that's a real worry. And so it changes a little bit of that experiencing experience of parenting. My son had an illness a couple of weeks ago, and he just had a fever all of a sudden, and kids get fevers all the time. But for us, you know, if it doesn't seem related to something else, and when it started, it didn't seem like he had a head cold, it didn't seem like anything else was bothering him, you know, it's like, for 30 hours, we were kind of holding our breath watching him carefully thinking, you know, is this is this something related to the liver? Is this the, you know, infection we need to worry about? Or is this just a normal kidney illness, and those are things that certainly have changed. And thankfully, it was dropping, you know, like, I'm always so happy to find oh it's a childhood illness. Thank God, you know, you know, it's, it's all and then another way that things have changed is that I think I'm getting better at this.

Alex  23:21 But I think for a period of time, I, I've had some issues relating to other parents, and I'm sure it was all part of my own process of accepting this. I do not want to minimize anybody else's experiences, or assume that everybody else's lives, you know, don't have issues, we all have issues, like I say this with the understanding that of course, everyone has issues, and people have significant health issues, and you may never know, and all of those kinds of things, you know, going to children's birthday parties and making small talk with other parents, you know, have probably mostly healthy kids. It, I had a lot of trouble with that. I still am working a little bit on that, you know, you straddle this line between wanting to protect your child's privacy and not have anyone know, because you don't want a diagnosis to define them, or to define your family. You know, where to take focus away from your other children or anything like that through you. You don't you want to protect that and protect that privacy, but at the same time, when you're going through something like this, some of the time, you know, I would have felt internally like, you know, you want to scream it from the rooftops, you know, this is what I'm going through, you know, I, I can't believe this is happening. You know, this is what I'm worried about, you know, and you can, of course, do that. But you're like constantly straddling this line between wanting people to be aware that you're in the throes of this terrible time period and also not having anyone be aware of that. And for me that combination was, was hard for a period of time.

PSC Mami- Monika  25:07 And you mentioned your son's siblings, how have those interactions been? How do you navigate that world and explain to them what's going on.

Alex  25:19 My other children are younger. So when my oldest was diagnosed, my middle child was at the time the youngest, and the was almost two, at the time going through diagnosis. So there was no explanation needed. Because, you know, he was lacking in awareness around what was going on. Exactly, thank goodness, you know, that he was there, he kept us laughing, he kept my older son laughing. They they spent time together, you know, getting it when my oldest was getting ready for his procedures or tasks, there would be my, my, my middle child, you know, sitting next to him and watching videos with him when he couldn't eat all day, or whatever it was his buddy and constant friend in that, and thank goodness for that. My youngest now is he was born just some months ago. So he's coming on board late to this party. Yeah, this will be all things that you know, we think about, when we think about how we'll do that, you know, and again, try to develop the language around how we will do that in an age appropriate way and meet them where they are. Instead, you know, we want to be careful not to foist onto them, anything that is that we think might be important, but beyond where he is new, there'll be plenty of time to sort of do all those things. As he grows older,

PSC Mami- Monika  26:48 We as moms or moms, and then we have ourselves and our our personhood, how do you kind of take care of yourself through this process? How do you find that space? And what supports do you reach out to?

Alex  27:04 That is such a good question. And I don't have a great answer. Because I, I haven't figured it out. The whole issue of self care and, and people will say how important that is, and it is so important. But how, how I do that is still a bit of a mystery to me, and it's a bit early innings for me, I think, in general with regard to this journey. So I know, I will figure out some of these things as I go. Certainly the supports. I mean, of course, everyone who loves us, and family has provided lots of support, which we appreciate, and good friends and things like that. But the, you know, where, where I find most understanding is other parents who have walked this road before me. And so that for me, finding that group and being able to identify those parents and connect with them and have phone conversations and email exchanges, and at times in person meetings. I mean, this was huge for me, I this really got me out of kind of when I think back to that really dark period, I really that's what kind of pulled me out of it, because you find that the realities for the patient community are really varied and very different than just what the statistics say, right? So it when you're just talking with doctors, and when you're just in that space, it can feel very dark, especially initially when you're trying to like recalibrate your whole mindset. And like so many people, I had never heard of PSC before. It became a part of our life. And so for me, connecting with those parents was actually really important to my well being. And I mean, I you know, I remember following diagnosis, like I have a have a long commute when I drive to work, and I distinctly recall, thinking to myself, you know, I don't know if I'll ever listen to music again. I don't I don't know if I'll ever feel joyful. No, of course you do. But it meant something to have other parents say to me at that time, you will. You will feel that again. Because Yeah, other people can say it, but if they haven't been through it, it's hard to it's hard to feel that that's real. And that was really critically important for me. You know, as far as the self care goes, as a parent, I you know, we all try to take time for ourselves here and there, I suppose. And it's a challenge, just you know, just with having young children in general. I don't I don't have any special magic. To that aspect of it, and I only there were magic. I know.

PSC Mami- Monika  30:10 And how is it been? Because when it's your child, right, there's also another parent involved there, you know, with your husband? How is it affected? The two of you? Or how have you leaned on each other? Or what challenges have you had in that space?

Alex  30:30 Yeah, it's, um, it...is...a space that is very ripe for all sorts of complications.

PSC Mami- Monika  30:44 Absolutely.

Alex  30:46 You know, you're right. It's it's in, there's two individuals who deal with these things, or, you know, we all have our own ways of kind of dealing. So it sort of doubles that complication a little bit. When you're, when it is your child, and you're trying to work through some of those issues. I mean, I will say that, we've been really lucky that when it comes to all the meetings with doctors, the treatment plan, you know, again, like I said, we spent a good period of time just trying to get certain things under control, and working with our team on that, and there were decisions to be made. And, thankfully, we were always on the same page with regard to those sorts of things, which I think is really important, because it would have been, like really painful, I think if one parent thought, you know, we should go one way as far as treatment goes. And another one thought now, that could be really, really difficult. So those decisions were, were easy to make together. I think that we've been really good about respecting the different ways in which we sort of mentally deal with this stuff.

Alex  31:53 And we've both had our moments of panic. For sure, but they come up in different ways. I think of it a little bit like, you know, I'll speak, I'm a planner, I'm a bit of a control freak, and life in general, you know, I'm the person on the airplane, that when there's turbulence, I'm like white knuckling it holding the side of the, you know, holding the armrest and thinking, you know, what does that what does it mean, when that ding goes off? And what's going to happen next? And how long is this turbulence, it's gonna last and all of that, and my, my husband is pretty much the opposite. And I think, you know, he's the person that just kind of rides it out, thanks. Well, the planes going down, the planes going down, there's nothing I can do about it. And I'm just gonna, you know, ride through it, which in some ways can be really complimentary. But you know, this experience was a little bit like that, where I'm, I'm more of an information gatherer and I like my data, and I like to connect with people, and I like to build relationships and communicate and talk and, you know, you have to hear things that are both painful to get to things that are, you know, are difficult. And then to get the things that are good and good stories. And so you, you got, you have to, you have to kind of do all that work, and I'm happy to do that. I like to do that. And he and I like to talk about those things together. But that's a different style, you know, then he has. We share, you know, we share a lot of communication around like the medical research and all of those sorts of things. And I think, probably, yeah, it's just been respecting each other's each other's approach and each other space in those things. You know, I know that, you know, I could always call and say, you know, I'm having a really bad day, you know, I'm, I'm just, you know, I'm, I feel like I made mental challenges the rabbit hole, you know, I tend to kind of fall into it unexpectedly, I'm better at controlling it now. But for a period of time, I, I would sort of unexpectedly go down, you know, spiral down and sort of my worry or thinking about these things too much in depth and kind of not letting you know the worries of today. But the worries for today, which is a mantra, I state of my thumb a lot. But I'm not that great at it. And certainly, my husband was always it's always, you know, ready to listen to me talk about that.

PSC Mami- Monika  34:18 As parents, we all have fears and hopes for children in their future. What are your hopes for your son?

Alex  34:32 I just want him to be happy and to and to be who he is. Not, I don't want to stay despite this disease because this is part of who he is. And it will have there will be experiences that will shape him a bit and I know it will make him a compassionate and empathetic person. Which I think he is already, but I can see how these experiences will probably help shape him. And I just want him to, of course, you know, be healthy, I can't control that, right the way that I would like to, none of us can. But my hope for him is that he is who he is and achieves the things he wants to achieve. With, despite the challenges, I guess, and having met and connected with a lot of people that were diagnosed with children, I think that's something that I can, I can see now better, again, initially, just because of the lack of real data on PSC.

Alex  35:55 And, you know, it doesn't seem like that when you initially Google it, you know, and I remember hepatologist saying to us, you know, that's what this is the one when we were initially sorting out diagnoses, you know, could be this, it could be that it could be this, you know, this is the one that will scare you, because of what you'll read. But you have to recognize that not every case, you know, when you're going through that, as a parent, you're absorbing, like 10% of what they say, you know, you might reflect on it later, which I do, but you're not getting it all up front. And so now I've come, I think I've come a far away and being able to see that, and believe that that, that that's real, and that we're going to get in there and that medicine is going to continue advancing too. And so sometimes when I get bogged down, in the worry about things that I cannot control, and potential complications of this disease, I need to remember that when you know, if and when those things present, which we all know with PSC could be tomorrow, or could be a decade from now or longer. That what medicine has to offer us may look different as well. And so, you know, it doesn't kind of does no good to worry about those things today. Because maybe the solutions are different. So when I when I think a lot about my dreams for him, and my hopes for him, you know, I'm always counter balancing that with my sort of, with my worry. And I try to remember, at least on the worry side, things will look really different. On the dream side. Now, I just want to be sure that we manage this along the way so that he can be the very full person that I know he will be.

PSC Mami- Monika  37:50 I love that image of the picture, right of you and your boys right before diagnosis. And you could write yourself whether it be a little post it or a letter, given who you are and what you've learned today. What what kind of note, would you want to leave for that version of yourself?

Alex  38:16 I think that the beginning part of what's so hard is that we always want things for our kids to be perfect. And probably for ourselves too, but trying to control that vision of perfection. And it's not perfect for a lot of people and families with this challenge or other challenges. But if it doesn't mean that that it's not still a wildly beautiful life. I think that in the beginning, the really hard thing is that you're recalibrating from this point of feeling like you're, you know, here I am, and I have these two healthy children and that that that, you know, you sort of have this vision of what your life is, and then you It's like the record player stops, right. And there's a loud screech and you realize, wait, I'm somewhere different than what I was thinking and it takes a while to orient yourself to that. But there is a new normal. And it eventually feels like what is supposed to be because it's what you have. And it's it's what you know. And again, it doesn't, it, you can still move forward.

Alex  40:02 Um, I, you know, have this battle with the fact that, on the one hand, I'm, I'm glad that my son was diagnosed this young, because we could bear the burden of the fear and of like figuring all of this stuff out that we could kind of, you know, we can like figure all this out, and then we can help bring him into it versus, you know, going through this with someone who is in their teens, or, you know, someone who just is much more aware, and perhaps would carry that burden of worry, like the whole time, which I think would be a different challenge. But at the same time, you know, when your child is diagnosed that young, it's hard not to think, Oh, my gosh, by the time, you know, he's 12, you will have had this disease for this huge portion of his life. Or when you read about some of the statistics in these 10 year-statistics, and you think my child should be getting their license, you know, not worrying about, you know, liver failure. It's just, it's hard not to think like that. But somehow, you, or at least, you know, somehow for me, I was able to, you have those thoughts, you're in that space, and then you do move through that space. Like when I was in that space, I didn't know how I would move through that space. So I would want to tell that version of myself that you do get through it, and that it is still for him, you know, more importantly than for me, a wildly beautiful life, that we're going to continue to enjoy together. You know, with joy, and with all the normal pains of childhood and all that kind of stuff. But that's a hard. That was that was a really hard thing for me to see for many months, following this diagnosis, period.

PSC Mami- Monika  42:13 Thank you, I have really enjoyed all your very visual metaphors and ideas and the ways to think about this journey. Is there anything that you would like to share that I haven't asked you about or anything that you would like to feel in your heart that needs to be shared with our listeners?

Alex  42:35 I just think it's really important for people to, if they, if they want to, to connect with others in the patient community that can help, can really help to process some of this stuff. I've been, I've been on the lookout for other parents that I see. I think that it is, it's a different experience as a parent of a young child, because you, I think if it's your own body, there's a sense of connectedness that you feel. Because you, you know, you feel yourself. I mean, you know what you're feeling. And I think when the young child, it's you, I can't get in his body with him, you know, to know what's going on, what does he feel what are where are the pain points, where if he's describing like, I can't do that. And it's just, it's just a unique experience of trying to manage that when you really are dealing with a young child who perhaps can't even vocalize themselves. And that's where it's critically important for support, to, to network with other parents in some way and connect with them. I think that the pressure in some ways, and I don't mean that even negatively, the word pressure has negative connotation, I don't really mean it that way. But sort of the the pressure to advocate and to kind of know everything about this disease is something I feel quite acutely. Because again, if it were me, I think I'd feel a little bit more, I'd have more choice maybe in how I wanted to handle things or if I wanted to deal immediately with it, or how I wanted to kind of pursue information. It's my own right, because it's my own body and it's my own, you know, self kind of thing. And I think when it's your child, there's often this mean, you know, they cannot advocate for themselves. And so I feel quite strongly that that's really my role. That's what I want to do and it's what I need to do is to become educated an advocate, and kind of file away all this information and that at times can really be quite overwhelming and hard for parents in a unique way, and where we kind of need each other the most, because there's someone who's walked this path ahead of you or can can walk alongside you for a little bit. And it's just been enormously helpful to me to have that resource. I'm forever grateful.

PSC Mami- Monika  45:18 And we can make sure to put some connection points on the resources page of the podcast. So if people are not quite sure where to reach out, I'll make sure to get some information from you so we can list it there. Thank you so much for your courage, and sharing your story. And really being honest and open. These aren't easy things to talk about, especially publicly. Thank you so much.

Alex 45:45 Thank you, Monika.

PSC Mami- Monika  45:49 Gracias for joining me. If you are inspired to share your story about your intersection of PSC and Parenthood, please contact me at pscmami.com/stories. At the redesigned website, you will also find more stories and resources. You can also follow us on Facebook, Twitter and Instagram @PSCMami