A couple chooses surrogacy influenced by her PSC and Crohn's diagnoses
Nika and Roberto discuss what it was like to discuss the risks and benefits of different options for becoming parents. Her diagnoses of Primary Sclerosing Cholangitis and Crohn's caused them to think carefully about pregnancy and parenting. They then share he process and emotions that have come along with their chosen route--surrogacy, and where they are in the journey toward parenthood.
Transcript
Nika 00:02 That it's possible to be a parent and there's so many different avenues and none of them are wrong or right. It's what's best for you.
PSC Mami- Monika 00:20 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, and eventually shuts down the liver, which SURPRISE 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.
PSC Mami- Monika 00:58 A reminder all stories and information shared our personal experiences and options and should not be used as the basis for treatment for yourself or others.
PSC Mami- Monika 01:10 All stories these days are filtered through the dual lenses in the time of the COVID 19 pandemic, and a time that the United States and other countries are having to confront the current and historical and injustices towards Black people. While this interview was recorded months ago, I want to address that, at the time of publishing, the PSC community is affected by both of these historical moments. Many of us are on immunosuppressants and have already fought for our lives in a medical setting. The presence of the Coronavirus may bring up an extra layer of stress and anxiety for us and worries about how to protect us best protect ourselves and our families. Additionally, our Black brothers and sisters who have PSC have confronted the additional layers of challenge in their health journey. Because of the documented and insidious inequities in our healthcare system, all of us have the responsibility to care for each other. We must follow public health officials advice to flatten the curve and work to eliminate injustices in our healthcare systems, health policies, medical research, and treatment development. I believe that seeking diversity is not enough. We must work purposefully to change the healthcare landscape, because Black health matters.
PSC Mami- Monika 02:40 In today's episode, we're going to hear from a young couple, Nika and Roberto, who have thought and felt deeply around what it means to choose to be parents in the context of PSC and Crohn's disease. They're open and honest with their own struggles and hopes. I am so honored to include their story on PSC Mami.
PSC Mami- Monika 03:06 Today we have a wonderful treat. We have an interview with a couple, Nika and Roberto. I met them a few years ago at a PSC conference. And they have been on this journey though they'll talk about their own story, but I'm very excited for them to share with you where they are and thinking about parenthood in the future. Welcome Nika and read them.
Nika 03:32 Thank you, Monika. Thank you for having us.
Roberto 03:36 Thank you for having us.
PSC Mami- Monika 03:37 Of course, Nika. Tell us a little bit about you're the one with PSC. Can you tell us a little bit about your journey how you've gotten to today?
Nika 03:47 Well, I was diagnosed with fatty liver. And I didn't know a lot about that. And I was 19 at the time, so I'm very petite and I always have been and I do just assumed I must not have this thing called fatty liver. I'm petite. I got that diagnosis from having slightly elevated AST levels. And I didn't think a lot about it. And then about, I think 2016, so about three or four years ago now, I have been giving myself b 12 shots, and those are kind of red in color. And I was actually not keeping them. So when I would use the restroom, it would come out and I thought I was peeing blood. And so that sent me to the doctor. And I went through a lot of different tests because we couldn't figure out what it was because it wasn't actually blood. That landed me into doing a lot of blood work. And that blood work showed my liver enzymes being elevated again, and that had happened on and off for a few years, so the doctor I was seeing suggested seeing a GI doctor.
Nika 05:06 And I visited the GI doctor and he saw that they were so slightly elevated, he wouldn't normally see me. So he wanted to do a CAT scan just because it had been chronically like that on and off for years. But he told me not to worry about it. That was very routine. And he sees this all the time. He just wanted to make sure like, do I have a fatty liver? Is it something else? So I wasn't really worried about it. And I went and got the CAT scan, and it seemed like there was something going on, but he wasn't very specific. He said, don't worry about it. Sometimes you can't see really well with CAT scans. Let's get an MRI done. So we went into the MRI. And, again, don't worry about it. But I think we should do a liver biopsy. So that's when some red flags kind of came up for me. A liver biopsy sounded pretty serious. I thought they were gonna have to cut me open and I was really scared. And he just explained that they would go in with a needle, and they would take the liver biopsy that way, and I should be fine the next day. So he went ahead into the liver biopsy.
Nika 06:20 And I went back to the doctor and this time I was a little apprehensive because he told me not to worry to this point. And it kept progressing. So I had my brother come with me. And he explained to me that I had PSC from the liver biopsy and he was very nice. He drew this beautiful little tree of the bile ducts that didn't tell me anything that scared me too much. I was really nervous. He did explain that I should get a colonoscopy and explained to me that a lot of people with PSC so have IBD, he explained to me what IBD was. And I was like, Oh my gosh, I definitely have this. Thank you for explaining what's been going on with me for like the last six months, I thought there was like something wrong with me and like I just needed to strengthen my muscles or something. So that was really reassuring, and that part made me feel better. But getting and we did a colonoscopy, and I do have Chron's. But having that diagnosis happen didn't seem like such a big deal. Because of course, as soon as I left the doctor's office, I did a lot of googling, you know, in my car with my brother in the car with me, and I called Roberta and I just started crying. And I went home and we talked a lot about mortality because we read a lot of things about life expectancy that weren't necessarily true, but we didn't really know much at that point. So kid stuff that came up in that conversation career so big things. And Roberto, what was it like for you to get that call and have that conversation? It was scary, to say the least.
PSC Mami- Monika 08:10 At that point, you all were dating, correct?
Nika 08:14 Yes, we were. We were dating for a little over a year at that point. But we we knew pretty early on that we wanted to get married. So we both felt committed to each other. And it was, it was scary in the sense that this is the person that I cared most about, in my life, and to hear that she might not be have her full health or that maybe in a few years, it could progress to the point where I might lose her. That was, that was scary to me. And it kind of forced us to prioritize our life and make sure that what we want what we were doing in life was really in line with how we want our life to look like in the future. But in the in the very moment when she called me Yeah, it was, it was scary. And we cried and we hugged each other. And we tried to figure out what we could do and if there was any people that we could talk to, and we did our research to try to understand it, because that's what we do. If we don't understand something, we want to learn more about it. And yeah, and through our research, we were just happy to find PSC Partners so that we weren't alone and we could talk to other people about it.
PSC Mami- Monika 09:54 And Nika, what was it like for you to make that call to him like what was going through your mind and heart.
Nika 10:00 Calling, calling, he was the first. I mean, he was the first person I wanted to talk to. I mean, my brother was there with me. And he had heard it all and tried to understand it. But I think we had been together almost two years at that point. And I was it was like a, almost like a no brainer. For me. It was like, I wanted to talk to him as soon as I found out. I'm a pretty open person, and especially with Roberto, I knew that he would be really supportive. He's been nothing but supportive since the moment I met him, which is really great and wonderful. Because this diagnosis, I think, had if not having supportive people in your life could be really challenging, but it was a difficult conversation. I knew that wouldn't change how he felt about me. And at the same time, when I went home that night and had a conversation with him in person. I had I asked the question of like, does this change what you want? Or do you still want to be with me? And I, I definitely felt like, am I broken? There was a lot of emotional processing. Do you want to sign up for this? Are you gonna do you want to be on this journey? I know you didn't originally sign up for this. So that was hard. That initially was really challenging.
Roberto 11:26 I do remember her asking, do you still want to be with me as tears roll down her eyes? And it was, it was not even a question for me. There was no doubt in my mind, but I still wanted to be with her.
PSC Mami- Monika 11:43 And where did you guys go from there? So you said you found you are researchers knowing the two of you it doesn't surprise me that you did some deep research? Where did you go from there?
Nika 11:54 We went through phases of acceptance first. Because we just started doing research and pulling up a lot of peer reviewed journal articles, because I lived in academic world, trying to bargain and figure out what I could eat and all these sorts of things. Eventually, when we found PSC Partners and started learning more, and we kind of reached out to the community and knew that going to the conference would probably be a good thing for us. And so we signed up for the PSC conference, both signed up to have mentors. I think we forgot to check the box for Roberto to have a mentor. And then I got you Monika as my as my mentor and I could not have been happier.
PSC Mami- Monika 12:42 It was awesome to meet you both.
Nika 12:45 Yea and Roberto ended up having your husband as his mentor. Its unofficial I think.
Roberto 12:54 I still think of him as my mentor.
PSC Mami- Monika 12:55 It's official now. And what like questions, did you you know, you In your initial conversation, you talked about future about mortality about kids about all these really hard topics. When you got to the conference, like what were you seeking? What were your questions there?
Nika 13:12 I think I just didn't want to feel alone. I want to community. I also having some of the stuff normalized, like I learned that my GI doctor may not be, it might be better to see a hepatologist to have some kind of experience in PSC, if that's possible. And there's one in your area and there happens to be, there's one in my area. So that happens to be one here. Also kind of figuring out, as much as I read through my medical records and I read them, how can I understand them through a PSC lens, and just because my enzymes are elevated, it may not be related to my liver, sometimes. And just understanding the medical side of it a bit more as it relates to PSC and getting that from professionals in the field. That was really helpful.
PSC Mami- Monika 14:11 And how about you Roberto, what to sort of look or find in that space that community space?
Roberto 14:19 I went in, similarly to what Nika was saying, looking for the community and having some of those symptoms and concerns validated by others having similar concerns and symptoms. As far as my, when I wanted to learn from the presenters themselves. I was I was really interested in learning about more about how the PSC disease works, or maybe how we don't really quite understand it, which is also also a thing, but I also wanted to learn what we I did have control over as far as things that PSC affects, and what we could do, because we have a lot of our control taken away from us. And I feel like the least we can do is make every effort to be as healthy as we can within the confines of what the disease allows us to be.
Nika 15:22 And how that looks different for each person. And the disease is different. And health is such an abstract thing. It's not as clear cut. And so not allowing other people's definitions of health to define our definition or allow ourselves to feel shame because of it.
Roberto 15:44 Yeah, exactly. Making your own decision.
PSC Mami- Monika 15:47 And where did you guys go from there as you looked forward to your future together? What was your next vision for yourselves?
Nika 15:55 We definitely wanted to figure out what do we do in terms of how Kids, and what do we want to do before we have kids? If that's if we had enough time to do that? What do you think Roberto?
Roberto 16:09 I know one of our first conversations was about if we wanted to have kids in the first place, because we weren't sure if anything would happen to Nika if all the caregiving would fall on to me. But I think in the end, we decided that we really wanted to have kids, we wanted to have a family. And we weren't going to let this fear of the disease dictate our lives, that we should still live our lives, how we want it, how we want to live it and plan as best we can. But still live.
PSC Mami- Monika 16:51 So you talked about like, that caregiving would fall to you. Right if something were to happen to Nika. What was that like? Emotionally for you to kind of process that. I think in hindsight, it sounds like a yea, we've decided this, but what was it like for you to really go through that process? And really honestly ask yourself that question. Are you okay with that?
Roberto 17:14 Yeah, that's a good question. I think my, I think it was more of a conversation for us of if, if it was something that I would be willing to take on. And if it was something that realistically, we could do as far as like, financially if I could take the time to take care of not only her but also raising a baby, if anything were to happen to her. But it was as far as emotionally It was. It wasn't really an issue for me emotionally because I, I would do it in a heartbeat. And so it's, it's not a matter of if it's more a matter of how. I felt happy, almost that's all I have a job that allows me to work from home full time. So that if, if anything were to happen to her, I would be in as best position as possible to be able to help her and any children that we have.
Nika 18:37 I think you went into like problem solving mode. And there is less emotion involved at that point and more like engineering brain taking over to figure out how to make things work. Regardless cuz I did really get the the impression that it wasn't about, like if you would do it you were at the you just skip to the hat is how does it work? Yeah.
Roberto 19:12 Yeah.
PSC Mami- Monika 19:12 And how is it for you, Nika, from your perspective?
Nika 19:16 I think it took me. I don't think I jumped to the house so quickly. Because I was still at that point processing. Is this fair? It didn't feel fair in general. It felt like the world had done something unfair at first, and I think it took me a while to kind of process that and then move to is this.
Nika 19:52 Is this fair to Roberto, if I, like is it selfish of me to say hey, I want kids, let's move forward. Or even, we want kids, but you might be signing up for more of this than I am. And it's not because I wouldn't want to, but it's because I may not be able to. And I still think about that. And I think that has helped us to decide what path to take to parenthood as well. And we can talk more about that.
PSC Mami- Monika 20:31 Go ahead. Tell us about where you guys, Well talk a little bit about the conversation that led you to the path you chose.
Nika 20:39 Sure. So part of the conversation was I'm very petite. And I have Crohn's, and it's difficult for me to get enough nutrients for myself. You know, I know maintaining muscle mass is important and being able to keep weight on as important. It's something I'm always thinking about and, and thinking about having to provide nutrients to a baby, if I were to be pregnant was a little intimidating, and also a little scary, as I'm not sure how I would do, and just being able to provide that. There are ways that we talked about with my GI doctor who specializes in women of reproductive age, who have GI concerns, I actually just happened upon her. And she had really great reviews. And she talked about how she can feed the baby through to if she needs to, that there are ways that we could make it happen. And she actually, imposed some of her beliefs, she wanted us to take that route and she felt strongly about that. Because of her experience being able to make that happen for people so we knew that was an option for us, but it might be a more stressful option. So that was something that we talked about. Roberto, what was your, what was your take on the me carrying?
Roberto 22:19 Yeah, we definitely talked about all those concerns about you being able to get enough nutrients and, and food inside you to feed yourself. let alone another another human being, a little baby. I know that we were also concerned about being able to take care of the baby afterwards if if anything were to progress.
Nika 22:48 I know we were also concerned about it can some conditions that happened during pregnancy for people who don't have any who don't have PSC or IBD, like gestational diabetes and sometimes there are liver things that happen just from like strain of pregnancy sorts of things like that. And so, I think there are the normal things that come along with pregnancy that can be a little scary sometimes. This adding on top and talking about the high risk pregnancy is in part like the possibility of tube feeding while I'm pregnant stuff just I think scared me a little more.
PSC Mami- Monika 23:32 So where did you go from there? So do you had this one option that didn't feel very good for you, you know, your personal route and your, your body? What other options did you consider and what route are you choosing?
Nika 23:48 Sure, so we talked about adoption, and that is not as expensive as some of the other options and there are, we love the idea of adoption because we're providing a home. And there are a lot of people in the world and we have a lot of love together. So we don't necessarily need to bring another child into the world and we could supply a home for another child that is already in the world. We have, we listened to a lot of people's stories about it. And we learned about the systems and we've heard success stories, and we heard rollercoaster stories and we heard stories that didn't turn out so well. And because I kept going back to Roberto, possibly being the caregiver, if anything happens to me, or if my quality of life decreases. I just didn't want to, I wanted to know what we're getting into as much as I could and not be on a roller coaster or questioning whether the adoption is going to turn out or go through. So we decided not to do adoption.
Roberto 25:04 And I think another part of is that we really took a look at our own wants and desires. And we really wanted to have a child that came from us ourselves. And yeah, and I might be selfish, and it's the route that we're taking isn't the cheapest route.
Nika 25:30 Nope.
Roberto 25:35 But we really, really want to have our own our own flesh and blood and and legacy to live on after us.
Nika 25:46 It would be really cute to have a little Roberto and Nika baby because it would be adorable. So we couldn't pass that up. So we decided to do surrogacy. And there are different types of surrogacy. I often hear surrogacy talked about in a different way than how we're doing it. We're doing gestational surrogacy, where the child is biologically both of ours, has both of our genetics and someone else will carry the child.
PSC Mami- Monika 26:24 Can you talk a little bit more about for someone who's never heard of it or doesn't understand the option?
Nika 26:31 Sure, the process of it. So first, we met with a lawyer to go over, kind of like how much it costs and what the process is like. And it's different in different states. The process of doing it is the same of like having the child but the laws are very different state to state. So it's important if you do gestational surrogacy or surrogacy really of any kind, that you know the laws in your state and there are some great websites for that. The kind of break it down. And the reason that's important is because if the person who carries the child in certain states they get right to the child as if it's their child because they gave birth, and in other states, it's biological.
Roberto 27:28 So it's just important to know that.
PSC Mami- Monika 27:32 Right and if you share some of those links, I'm happy to put them on the resource page for people to take a look at.
Nika 27:38 And as far as the process, so for gestational surrogacy, and I gave myself shots for hormones to increase my estrogen and helped me produce a lot of eggs. I we kept joking that I was Mother Goose during this period. So I did. They're really, really tiny little needles. They're the same ones that people who take insulin use. And I gave myself shots for two weeks. I went in every other day for an ultrasound to see how many eggs we were at and how big they were. You typically get around nine to 10 eggs. We had 44 which was a lot.
PSC Mami- Monika 28:27 Mother Goose indeed.
Nika 28:32 Yeah. And so we have 44 and then after you, you go there I happen to go on my birthday, you don't get to time it. The eggs time it for you and the medicine times it because they give you one shot for the first the first week and a half and then as you get to the end, they give you another one to slow it down. Then you're still going in every other day, sometimes at the end every day, to see how big they are. When they get to a certain size, it's like time, like they're going to harvest them. So they put you under. It's very, it's very easy. I was fine. Like, two days later, I was moving around, didn't hurt like I was okay. But they had to go and they just had to go on my birthday. I'm just gonna say that they were born on my birthday. For good luck. And then they take they take the eggs, and they take the sample from whoever your samples from. Roberto was my sample. But if there's not someone in the picture that you want to have as your sample or for some reason, maybe their sperm count is low, you could get a donor and then they make little baby embryos and they help the embryos get to about five or six days old. And then they freeze them. So you lose eggs throughout the process. So we started with 44. And then we ended up with 20 embryos, which is a lot of embryos. But we still went from 44 to 20. So that was a big change.
Roberto 30:27 And then from there, they're frozen for however many years that takes you to raise the money to finally decided that you want to that you're that you're ready to have kids, and then they'll ship the eggs to wherever your surrogate lives. If they're not in your they're not in your city. And they'll implant them in the surrogate mom.
Nika 30:56 Or your surrogate could come to where you are as well depending on what situation you have arranged, and the surrogate would take the seems a similar stimulating hormone, so their body is ready to receive the embryo as well.
Roberto 31:16 I think the last thing that I wanted to add to that, if you have any, you don't have to have any fear of having twins or triplets like or being an octo mom. They do it one at a time now and that's their that's their process. So you're very unlikely to have twins.
Nika 31:36 It's slightly increased, but I think it was like 1% or something, but we're not doctors. Yeah.
PSC Mami- Monika 31:45 And how are you feeling about where you're at in this process? You have here, embryos, embryos frozen. How are you feeling?
Nika 31:55 I think where it feels like we're actually making steps towards Being parents when we were at the beginning of the process, it kind of felt like a pipe dream. Surrogacy is not cheap. It's hard to say how much it is because it depends on your area and it depends on your surrogate. So the lawyer kind of gave us a ballpark and $60,000 to $160,000. And that's a really big range. And I'm sure there are people who have done that much cheaper than that too. It doesn't feel like a pipe dream anymore. It feels doable, and we've we paid her part of the expense and getting the embryos. We were fortunate and we that was that process is normally about $25,000. And in Richmond BC, you did it for 15. So that was a big difference and they also are less expensive for the implantation of the embryo than some of the places. And so we've at this point, we've paid for that as well as we've saved up quite a bit of money for paying for having a surrogate as well. And we have a friend who's offered to be a surrogate. Your surrogate has to qualify to be a surrogate because they need to be healthy, and they need to have had previous healthy pregnancies and that sort of thing. We're kind of looking for a surrogate, but we don't want to look too much and get excited about having that part of the process done until we have the funds for it. And we're ready for that. So we're in this weird in between space where we still need to raise more money, and we're excited, but we can't run just yet.
PSC Mami- Monika 34:01 And how about you Roberto?
Roberto 34:03 I would say, very similarly that at first, we did feel like it was going to be this unattainable thing that we are saving up. And it's going to be forever before we can finally afford to, to go through with this. But we've, over time we've gotten our finances down and we thankfully been able to save a good amount. And so it's become this thing that's this goal that is within sight. And now it's a matter of, okay, we can, this is achievable. And we can actually decide when we want to, we want to do this. So let's, let's make sure that we're actually ready for that one we are, that we have done all the things that we want to do. That might happen for a little while once we have a little baby to take care of like, like traveling internationally to anywhere that we want to go to. or making sure that we're set up in the house that we want to live in for a little while. I can't imagine moving is very easy with a newborn baby. But it's exciting. Honestly, it's I didn't think that we would ever achieve it, and now here we are, we're we're moving forward on it's it's very achievable.
PSC Mami- Monika 35:45 And how's your health been Nika. They talked about a little bit about how you got diagnosed, how have you been since?
Nika 35:52 I, for the most part have been asymptomatic with PSC. It was progressing a little bit in the middle of last year. And my Crohn's was not controlled. I'm just still trying to find a medicine that worked. Currently, all of my levels have gone back down to normal. And my inflammation markers are down. So, health wise, I'm doing well now I still have a bit of fatigue on a regular basis. I still have my spoon theory that I wake up and how many we got today. But other than that, I think it's better. And I was also lucky to find a job that two days out of the week I get to work from home. So that's been really helpful
PSC Mami- Monika 37:01 And does hear like how you're feeling. Shift your perspective in this process.
Nika 37:09 I do often ask myself how I'm going to keep up with a kid. Especially on days where I feel very fatigued. Or I feel very fatigued. And we are with our friends who have two kids or three kids. And I'm like, I, maybe this means we only have one because they have so much energy. I don't know where it comes from. I don't think I have that much energy. So yeah, I mean, you would know a little bit about that.
PSC Mami- Monika 37:48 I think all parents asked that question though. Whether they're sick or not.
PSC Mami- Monika 38:03 So as you look forward, what are you excited about? And what are you still a little nervous about?
Roberto 38:11 And that's a question for both of you. I'm excited for, for us to be parents, and at the same time, nervous to be parents. I think everybody hopes that they're going to be as good or better parents than their parents were depending on, you know, your childhood experience. But, you know, it's, you never know how you're going to be until you're actually a parent. So I just hope that we stick with how we want to be as parents that are intentional. And at the same time we we still want to enjoy our time together. Because we are recently married. All that to say excited to be a parent and very nervous to be a parent to.
Nika 39:16 I am I'm excited to be a mom. I'm such a mom. Around little kids, I am such a mom, I love kids. I'm, I'm a little, sometimes I worry that waiting to have kids until a few years later might be a mistake, instead of just going ahead and trying to have them now because I always wonder if I'm at my best health now that I'm going to be and if like, maybe it gets worse from here. And that's not fair to my kid. But I think that's something I'm always gonna wonder. And I don't, I'm not sure that's gonna change. And at the same time, I still want to be as prepared as you can be to be a parent which take that for what it is, I'm sure.
PSC Mami- Monika 40:30 Is there anything you all hope to talk about that I haven't asked about yet?
Nika 40:37 I think it's important for people to know that it's possible to be a parent and there are so many different avenues. And none of them are wrong or right. It's what's best for you. And it's okay to be pregnant. Even If I'm scared of it.
Roberto 41:03 Yeah, I would, I would also agree with that to other people and seeing how they're experienced as well. And also knowing that your experience could be completely different. But it's just, it's just a personal choice. And you just got to know what works for you.
PSC Mami- Monika 41:24 Did each of you have an have a vision before this journey of what parenthood would, how it would happen and what it would look like.
Nika 41:35 I definitely thought that I would be carrying. And I thought we would have two kids and I think, who knows I might be wrong, but I think at this point, mostly due to cost. As we have enough embryos just to have an army or a really cool band, or a lot of other really great things, but I think we're probably only going to have one.
42:09 Yeah, I think we finally, I think we've decided for the time being that we're going to stick with one on kid until the foreseeable future. But as far as how we first envisioned being apparent, I think it definitely had visions and imagine myself taking Nika rushing her to the hospital and waiting in the lobby, and to hear how everything went and to hear the doctor come out and tell me everything's okay. But now with surrogacy we'll both be in the waiting room waiting to hear how everything went. So…
Nika 42:59 Yeah, I think I think there are some things I'm a little disappointed about, like, as terrified as I think I've always been a pregnancy. And I also kind of romanticize the idea of being pregnant and like, Oh, I can like sing to my belly and I can make jokes about, oh, I ate that when you were pregnant. So that's why you like that, like that kind of stuff.
Nika 43:27 And, like playing guitar to my belly, and stuff like stuff that is like the really fun parts of being pregnant. So having, I think there is a loss like I had to come to terms with. I'm not going to do that. And then finding ways that I can still do meaningful things related to surrogacy to have different, different romanticized pieces of instead because that's important to me.
PSC Mami- Monika 44:07 Like what kind of emotions come up as you do you talked about disappointment as you just do come to terms with a reality that's different than your vision.
Nika 44:18 I think it's sad. I think I definitely felt I didn't just feel disappointed but feeling the loss and I think, I think sad is probably the most accurate. Longing, there's like a longing for it. The loss. I remember thinking, do I still get a baby shower? Like, do I still does it still count that I'm a parent, like, does it matter? like do I get to celebrate in the same ways. Do I still get maternity leave? Like, you know, kind of stuff
Roberto 45:05 Do people still count us as parents?
Nika 45:10 Or like count as being pregnant? Like, is that excitement gone? Like, do people disregard us? And then realizing that I put a lot of value on how other people view their pregnancy and what other people's judgments are.
Nika 45:33 I debated. I don't think I really debated I'm pretty like my own path. But I know that another family member and Roberta's family did in vitro. And that was difficult for them to share with the family because it's not traditional. It's not a traditional way to have a baby. And I thought, you know, if someone was worried about sharing in vitro, what is surrogacy? You know, and there's there are some judgments with that. I think that's why, like, ethically some people are not for surrogacy, and that's something that we had to ask ourselves. Are we okay? With ethically for ourselves, but also how are we going to handle other people's responses to our choices? When they may not be kind?
Roberto 46:40 And how's the shift been for you, Roberto? You know, as kids, you get the simplified version, right birds and bees. And then as we get older, we learn that there's many more ways than just that. And the fact that you're taking a different way that you've chosen that you're excited about. But what was it like to make that shift.
Roberto 47:03 It was it was definitely having coming to terms with a little bit of a loss of those experiences that come with your typical pregnancy. Like I said earlier, waiting in the in the waiting room or or going to the, I forget the term for it, but the classes that you take the right before giving birth. Yeah, all those all those things that go along with being a dad but also remembering that we are fortunate enough to be able to have kids and remembering that we still have the time afterwards with them. So you don't have to focus on just what comes before. But is a loss. And it's a lot, but we will we will have them, and I will be grateful for them all the same.
PSC Mami- Monika 48:18 I'll be great one to get an update from you guys how our processonce you're on the other side if you will.
PSC Mami- Monika 48:27 Well, thank you for sharing your story. And I really do look forward to meeting a little Nika-Roberto. I think they are going to be adorable. And I think that even just sharing the story of anticipation and the process where you guys are at is so important. And I look forward to hearing how the rest of the journey goes.
Nika 48:54 Thank you. We're excited and we will keep you updated.
PSC Mami- Monika 48:58 Great! alright, thanks.
PSC Mami- Monika 49:05 Gracias for joining me and honoring this story. I could ask you to rate and review this podcast. But let's be honest, the target audience for this podcast is small, PSCers and their families. More powerful is if you would share these stories in your networks. You never know how many degrees of separation there are between you and an unknown PSCer. I once met a woman in an art class of only seven people who also had PSC, because one of the pieces I was sharing was about processing my own illness. So please share on social media or other networks, so that those who need this story are able to hear it. You can find all stories on pscmami.com. And of course, I would love to hear your story and maybe share it on a future episode. You can find a contact form on the website or email me at pscmami@gmail.com.
