I’m Aware That I’m Rare: Tarya Morel (365)

The phaware® interview

Canadian pulmonary hypertension patient, Tarya Morel discusses parenting in times of a pandemic.

My name’s Tarya. I live in Vancouver, B.C., in Canada, and I’m a mom. I have two kids, one by birth and one by foster.

I was diagnosed with pulmonary hypertension shortly after the birth of my son. I’ve heard from so many other moms out there. That was their journey, too. I know that for women who are diagnosed with pulmonary hypertension, if we do have kids, because I know we’re told often that we probably shouldn’t once we have our diagnosis, but if we come to that diagnosis after having had kids, a lot of women that I’ve heard from have talked about having sort of subclinical symptoms before and then that getting just kicked into high gear through pregnancy, because pregnancy is no joke. It does all kinds of stuff to your body that really sort of brings those other things to light. So, I’m one of those women.

When I first got diagnosed, I had this infant, I had this little baby who needed me. It was a wild experience, because you have all these ideas about what parenthood is going to look like, and then it all just gets completely flipped upside down. Suddenly, they’re talking about putting me on a pump and IV meds with this attachment, and I’m picturing this little baby who grabs everything and puts everything in their mouth. I’m thinking like, “Oh my God, he’s going to reprogram this thing and I’m going to be trying to decode it like an episode of 24 before the meds stop running.” It was like, it was a lot to integrate in a really short period of time. At the same time, I would say at the beginning, he was my salvation.

I get this life threatening diagnosis. I was severe when I first got diagnosed. I really thought that I only had like maybe a year or two left based on the statistics that I’d read online and where I was already at. I thought, “Okay, well, I get a couple good years with this baby.” It really forced me to be super present with him because a baby doesn’t know. They don’t know that there’s really heavy, serious stuff going on. I had just lost my dad the week before I got my diagnosis. I think he saved me from wanting to just go into bed and pull the covers over my head and cry all day.

I got very lucky in that I responded super well to the meds and I did really well for a number of years. I’ve had my ups and downs. I’ve had to change meds a few times and had more hospital stays than I would like. I also managed to do a lot of things that I never thought were going to be possible. I went back to work part-time at first, found an amazing job, and now I work full-time from home. Well, from home for the last two years during this pandemic. That’s a whole other thing.

Parenting through a pandemic, I think all of us who have done it, navigating the challenges of, “Do I put my kids in school? Do I not put my kids in school? How do we navigate social interactions?”, trying to keep them entertained and educated, while also trying to maintain my full-time employment. I think it’s been hard for parents across the board, but then you throw a chronic illness into the mix, and it’s absurd. These last couple years have been so crazy and my kids have been my salvation through it. We’ve had a lot of fun together, like a lot of experiences that we probably wouldn’t have had because they would’ve been out of the house doing their own thing, and we really were forced to just be each other’s best friends.

You want to shield your kids and you want to protect them from the big, bad scaries of life. Sometimes when you have a disease like pulmonary hypertension, you can’t do that. They just become a part of what’s happening because they’re here and they see it. My kids have visited me in the hospital more times than I would like, that’s more normal for them than I would enjoy. I was on IV meds for a number of years. In the last year of it, I had lots and lots of problems. Lots of infections, lots of clotting, lots of issues.

I remember one time, I had an issue where I had a line that was just getting constantly clotted. I don’t know if you know much about how the line issues work, you probably do, but you need that medication to be running. It’s very much an emergency when that stops, so you need it to happen quickly. What was happening is I couldn’t get the cap off of one of the things. My niece was home and I had to ask her, “Can you go next door and get a pair of pliers from the neighbor immediately?” She saw the panic in my eyes and she went next door and she got it settled. She knew, because she’d sort of seen this kind of thing play out before, that she had sort of 911 on the standby and she was ready to go. She was, I think, 15 or 16 years old at the time. That’s a lot more vigilant than a teenager I think should have to be. At the same time, I think my kids are going to grow up with a lot of empathy, because of what they’ve seen this disease do and what they’ve seen us have to deal with as a family unit. There’s a good side to it. I would still not choose it given the option, but they’re building some character.

I’d happily go the rest of my life and never hear the term unprecedented times, but that’s where we’ve been for the last couple of years. For the kids, they’re right in that middle of that social development that is so important for them. I think at the beginning, it was actually easier, when everyone was on the same page. There was very much this social understanding of stay home, let’s all do what we can to keep each other safe. My kids made a lot of use of online interactions in a really good way, I think. My youngest plays online games and manages to connect with his friend in Norway all the time, which is really kind of cool. It wasn’t something that we saw a lot of happen and managed to stay connected with his school friends a lot through that, which was really nice to see.

I think it was hardest for the teenager, for my older one, because she was, I guess, 15 when this started. She’s 17 now. She’s in grade 12. She missed her whole grade 11 year. Did schooling from home. Did really well academically, but I think it was really difficult for her socially. Then things started to get better, and then she got a job, and now she’s working in retail. We’ve sent her back to school, because it’s grade 12, and I couldn’t take that from her.

But I would say that right now is actually the hardest time, I think, because we’re in this place now where despite the fact that, epidemiologically, this is the worst wave. We have more people in hospital than we’ve ever seen before. Way more cases than we ever anticipated were possible. At least here in B.C. Everybody’s kind of given up. We have very little in the way of public health restrictions. There are no online options for kids with medical vulnerabilities.

Even my younger one, who I would prefer to have home right now, at least until he can get his second dose of vaccine, because we don’t even have access to that yet here in B.C., because it’s not just me. Yes, I am worried about getting COVID from the kids. A hundred percent. I’m as vaccinated as I can be, so I’m hoping that will keep me safe. But I would say I’m equally worried for them, because even though I know the risk is low for them to have long-term impacts, I live with breathlessness every day and I don’t want that for them. I know that there’s some proportion of people that have long-term symptoms of COVID. Just as a parent, I want to protect them from that. It’s preventable. Sending them back into just buildings full of people where there are just so many sick kids walking around, wearing masks poorly, coughing on each other, it’s terrifying to me, but that’s where we’re at in B.C.

I find it so difficult to reconcile, because this wave is global. We’ve got everybody going through it at the same time. It is spreading like absolute wildfire. It’s also the moment when we seem to have the least governmental and social willingness to act. I get pandemic fatigue. I get it. People are tired of it. There’s a lot of protestors. It’s become very political. But for people like me, that’s, I think, extra scary because even with my boosters, I worry about what this will do to me and my disease progression. My health hasn’t been super stable lately, and so I worry about this accelerating my need for a transplant or at the very least lining me up in the hospital. Like I said, I’m just so worried about the kids contracting this and having long-term health issues. It’s just not what I want for them.

The other wrinkle is that I also became single right before the pandemic. Moving into single parenthood or co-parenting, which co-parenting through a pandemic, wow is that super fun, and not necessarily always agreeing on restrictions, and travel, and school, and all the rest of that, that’s a whole other piece to navigate. Again, I have so much empathy for everybody navigating this pandemic right now, because we’ve all got our own challenges through it and it’s hard. But I think I learned through that, and through the pandemic, and figuring out my own self, is that I am so much stronger than I thought that I was.

I think one of the reasons that I stayed in the relationship I was in so long was that I was really afraid, as a person with a chronic illness, that I couldn’t do things for myself. All of that housework, figuring out meals and the dishes, and trying to work full-time, and get the kids to school, and all that, it all felt so overwhelming. With the help of good friends and being able to outsource some of those chores, I have a house cleaner who comes in once a month now, and I will never go back. It’s amazing.

I really figured out that my kids were also a lot stronger than I thought that they were than I ever expected them to be in how they helped me out, and how they take care of themselves, and how much empathy that they have in taking care of the people around them. I’m so grateful for that. For the amount of time we’ve gotten to spend together. Especially with a teenager, you expect that they will be out and about. When she was younger, she was. She was super independent. She knows how to get around the city on the bus, but now we’re having to give her rides all the time, and we get to chat in the car. It’s just an experience that I wouldn’t have had otherwise. There’s upsides, too.

I think if I was to give advice to other parents with PH, because I know it’s really challenging and it’s really intimidating and it’s scary, I think there’s a lot of social pressure on women in general to be and do all of the things. To be the mom who does all of the birthday planning, all of the Halloween costume making, all of the homework help, all of the meal planning, all of the Christmas shopping. There are so many roles that moms fill, and on top of their work, if they work, and on top of all the family obligations, and all the rest of it. Be gentle with yourself. I would say for anyone, especially through this pandemic, trying to be that mom is impossible. Then when you throw a chronic illness on top of it, you can send yourself into an illness episode just trying to get all the things done. I would encourage everyone to ask for help a lot. Often, the people around you want to help. They just don’t know how.

One of the best pieces of advice I ever got was from my midwife a long time ago, who told me to keep a list of actionable tasks on a whiteboard or something on my fridge, so that when people asked if there was anything they could do, you have a concrete thing to give them to do, because people want to help. They just don’t know how. If you need dog food picked up and you’re talking to, a friend, “Is there anything I can get for you?” “Yeah. You know what? Can you get me some dog food?” They’ll do that, and then they’ll feel like they’ve contributed to your life, too. Right? Everybody wins in that situation. Ask for lots of help. Be gentle with yourself. This is hard and you’re probably doing a lot better than you think you are.

I’m Tarya Morel, and I’m aware that I’m rare.

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