Disabled Parents Interview w/Dominic Quagliozzi

An offshoot of the Expectant series

Disabled Parents Interview is just that—interviews with people who identify as disabled parents sharing their experiences around disability and parenthood. Here is my attempt at assembling a handful of stories and experiences!

Below is an interview with our third disabled parent of the series, Dominic Quagliozzi. (You can read the other previous interviews here and here.) Through various media, with a focus on drawing, painting and performance, Dominic Quagliozzi's (he/him) work deconstructs his lived experience with chronic illness and disability to explore social relationships and the domestication of illness. His work aims to highlight the interdependence needed for healing and notions of longevity within personal and shared experience. 

A white family of three posing for a group selfie in an arcade. The mom and dad are middle-aged with big smiles, having fun but also a bit run down from the week. In front huddled between them is their 4 year old son, pink cheeks flush from running around and playing arcade games with his cousins. He has a big smile and is starry eyed from all the flashing lights and sounds from the games. 

Olivia Dreisinger: As the non-birthing parent, what was the pregnancy phase like for you? What about the birth experience?

Dominic Quagliozzi: Well first off I wanted to mention that my wife and I had to do IVF because of my genetic disease/chronic illness. And I owe everything about being a parent to my wife, who overcame a lot to give birth and I was in such awe and admiration of her the whole time. I was born with cystic fibrosis to which 97% of men with cystic fibrosis don't have vas deferens and because of that we knew when we first started getting serious that we wouldn't be able to have kids naturally. When we decided it was time for us to have kids, I wanted to be fully present, cooperative and supportive in every aspect of the IVF journey, the birth, all of that because I honestly felt like it was my fault that we weren't able to get pregnant easily and cheaply. 

We found out we were pregnant after three cycles of IVF, one that led to a miscarriage, another that led to a failed embryo transfer, and the third was a successful embryo transfer into successful pregnancy. The first two attempts left us very cautious and always on edge throughout the whole journey. I felt like I needed to be the “rock,” and handle all the medical, hospital, aspects of the IVF and birth- for my wife, because she coincidentally is/was very medical-averse and doesn’t like giving up control or power to doctors and has a fear of needles. Like a literal bodily reaction, fainting etc to needles and it was very traumatic for me. I went to every appointment with my wife, I supported her as best I could and I know there were things that I probably should have done and didn't, but I think overall I did my best to be present and to be capable of supporting her and whatever she needed. The birth experience was really interesting because we were in Los Angeles and we didn't have any family members around so it was just kind of her and I. We were getting past our due date and because of that her doctors were concerned that the baby was getting too large (due to her gestational diabetes), so they scheduled an induction pregnancy. I wanted to be strong for her and lead by example - as someone who has been very medicalized because of my chronic illness - so I tried to coach her as best as possible. When she got the epidural, I tried to be present and listen to everything the doctors and nurses were saying and, you know, obviously all of that couldn't even prepare me or her for what the actual birthing process was like. I had the music playlist all queued but forgot to play it. 

The first part of the birthing process was pretty smooth and easy. There was a lot of anxiety because we weren't necessarily sure how it was going to go obviously, but then after a few hours new people, new members of the nursing staff and the NICU came in and they were wheeling in machines we were unfamiliar with and that's when we started to get a little concerned. But I think this was were my biggest role was fulfilled- being her calming force. I am pathologically optimistic and she is a very vocal realist (don’t let her hear me say pessimist). But I think my presence in the delivery room and lifelong resilient attitude to still actually being alive helped her not go to a very dark place and continue to push and to work to get our baby out. At the start she was hitting all her benchmarks and then things started to unravel pretty quickly and they were worried that the baby was going to get stuck or have shoulder dysplasia and so they had to do a few maneuvers to help get the baby out and that was, you know, shocking in the moment and when our son was born he was very purple and wasn’t making any noise for what seemed like forever, but it was only a few seconds. We both seemed to have this sense of dread flooding through us and then all of a sudden he just started screaming and crying and the relief that we both felt, the joy and the timelessness of that whole experience was just absolutely wild. He went to my wife first on her chest and then shortly after I got to hold him shirtless and that was the most moving moment of my life. 

Olivia Dreisinger: What was your postpartum experience like? What was good, what was hard? 

Dominic Quagliozzi: The postpartum experience was actually really great for both of us. It had its challenges trying to coordinate the schedule of his feedings and his sleeping and things like that, but for the most part we both really enjoyed spending time together and with our son and I actually felt more secure than I expected to feel. I think my wife felt a little bit more cautious and careful and maybe it’s just because of my history with my own body and it’s resilience but I felt a little bit more in control than I actually thought or expected to be. We both had pretty specific roles in how we wanted to approach the care, especially with a newborn. I was taking night duty so my wife could sleep. We did breastfeeding and bottles and I would get up at the scheduled times to feed him his bottles overnight. We had a period of time where we had the bassinet in our bedroom so when he needed to be changed or fed I woke up and walked across the room and did that so my wife could sleep. I feel like we both got really lucky because right from the beginning my son was a really excellent sleeper. We did have obviously the exhaustion that new parents have but it wasn’t anything that overly lingered and we got into a pretty solid routine that we were both pretty comfortable with which I think helped a lot. 

It was hard though because, you know, you go from being two people walking around, going to work, having fun, going to the beach and then all of a sudden you have this full-time responsibility that can’t do anything for itself, but I think we both took the time to acknowledge that we wanted to slow life down and I wanted to do as much as I could for her and it was a very new experience for both of us, but our relationship was kind of built on these new experiences with a lot of unknowns especially because of my health issues. In the past, within our relationship, I had a lot of surgeries. I had a lung failure and was in a coma for 5 days. I had a double lung transplant in which we waited on the lung transplant list for three and a half years. Also all the time it took to prepare and get organized to do the IVF cycles and during that whole process my wife ended up in a coma for 4 days due to a complication from a fibroid surgery so we were both kind of actually just relieved that we had this major accomplishment together that actually was something that worked out for us. The care and the love that we felt for each other and for our son was just, you know, I feel like it was like a constant high.

One of our parenting goals we both agreed on was to raise him to have independence and flexibility, so we started going out with him after a week. We brought him to restaurants, to the park, and things like that. But when he was 3 months old the Covid pandemic started and lockdowns became the thing.

Olivia Dreisinger:  How has disability and illness impacted how you approach being a parent? 

Dominic Quagliozzi: I think my having a disability and chronic illness actually better prepared me for being a parent. I think that I’ve seen the resilience of my own body and the ability to adapt and maneuver under stress and pressure, the ability to face the unknown and have a positive outlook, contingency plans and leaning on community and family for support when needed, like, these are all survival strategies that my wife and I have gotten used to over the years through my lung transplant and through our IVF journey. So, I think we were really both prepared for that.

Me specifically, I tend to be mega-optimistic and I tend to look at the bigger picture a little bit better. I live in the moment more because I know that at any point my health could deteriorate and I could no longer be here so I really do savour the moments with my son. I feel like I pass on to him an ease of, you know, to enjoy the moments and to build upon the important things in your life. I teach him about caring for others, being empathetic and observant of your own situation and others situations, and, you know, I pass on the idea that life is about community and the relationships you have. I know he’s only four-and-a-half-years-old so obviously this is like, you know, foundational things that I hope that he grasps. During his first year and a half of preschool, where he’s been more social and meeting other kids and interacting with other adults that are not his family, a lot of people have said to my wife and I how caring he is and that he tries to talk with everyone. Things like, if someone falls or it seems upset he goes over to them and asks how they’re doing and I do think that's actually a direct correlation between having a parent with a disability.

My son has seen me have blood sugar crashes. After my transplant, I got diabetes and so he’s seen me with blood sugar crashes and laying on the floor saying I have to call 911 and you know I've called 911 and the firefighters came. We were eating breakfast one morning and I had tell him, even though my speech was slurred, that there’s going to be firefighters and some police coming to the house and if daddy falls asleep and doesn’t wake up you know they're going to help me and not to worry too much and, you know, so he’s seeing these type of scenarios firsthand and I think when he goes out into the world and sees other kids or other people he can kind of gauge how they’re doing and that registers with him and I think that's really interesting and important.

The times I’ve been in the hospital for extended treatments for rejection of my transplant, he has stayed with my mother, or stayed home with mom and we just tell him daddy is away for a few days. I’ve gone on work trips for an artist residency for a week, and to Australia for a show for 10 days, so it’s not totally out of the ordinary for me to be gone. And we will tell him about it all when he’s older.

Olivia Dreisinger: What advice would you give other disabled people thinking about having a family?

Dominic Quagliozzi: Advice I would give…? I would say … obviously parenting is very hard - there’s a lot of logistics, there’s a lot of responsibility shifts. My role for my whole life was just taking care of my own self and I put myself number one, my health, you know, trying to stay on insurance and have enough money to pay for medications and equipment that I need and things like that. That stuff doesn’t necessarily go away so you have to be very prepared, you have to be very willing to put yourself second, like take care of your own health, but know that you’re going to have to put your children first. 

I would say the most enriching experience of my life has been becoming a father and I would definitely encourage anybody to do that. I think having a supportive partner is of the utmost part of my success as a parent, for sure. She’s taking on more than double responsibility because you add in the fact that there will be times when I’m in the hospital and she’ll have to do double time as a caretaker, for me and for our son, and probably still have to go to work and so it’s a lot of logistical things trying to figure out child care and making mortgage or rent payments and having money for food and clothes and a little bit of travel and whatever there is but I think it's definitely worth it if you pace yourself. Make sure you are putting love first and being present and laughing at the mistakes and realizing the bonds that you’re building are much more important than the things you have. Yeah, I think those are some of the pieces of advice I would give. 

Olivia Dreisinger: Anything else you’d like to say?

Dominic Quagliozzi: The last thing I'll add is something that I’ve been thinking a lot about or actually more like feeling a lot often. I don’t really know how to talk about it or address it specifically in our conversation above, but this idea, I don’t even really know what I would even call it, but it’s like this notion of a kind of guilt or it’s like a survivor’s guilt for something that hasn’t happened yet. See, I can’t even articulate it. It’s a challenging state to be in.

As someone living on borrowed time, literally as a double lung transplant recipient, I’ve gained back life and ability after years and years of high levels of debility and disability. But after 5 years of being post lung transplant, the survival rate is less than 50%. So I see that as a coin flip every day, now I’m 9 years post and the survival rates go down every year. And I’ve been in chronic rejection for over 4 years, with declining lung function, diabetes, worsening kidney function… I’m not even sure how to talk about this. 

This is from my notes, just a written piece that I’m working off of to try to better articulate and understand and harness this feeling:

“Sometimes I feel guilty for enjoying my son too much, like I can’t get too overjoyed because the possibility of not being here for his whole life crushes me. I see this trade war going on, the capacity to get so high on the love for him contrasting the devastation of not being there for him. Don’t I dare tempt fate. If everything is just mid I could coast along for decades. The thought of me not being able to help shape who he is, be there to comfort him in times of dire lows, celebrate his accomplishment. It’s really hard.”