A dad's view of the NICU

By Louise Kinross

Bob Moran is a political cartoonist for The Telegraph newspaper in Britain. In 2015, he illustrated a heartfelt memoir about his daughter Poppy, who suffered a brain injury during birth. Father’s Days contrasts how he imagined his new role as dad with the terror of seeing his critically ill newborn hooked up to machines. It’s been viewed millions of times around the world and is used to train clinicians in neonatal intensive care units. This year on Father’s Day, Bob released a sequel about his family’s first trip abroad: Father’s Days at Sea. His daughter Poppy is now four. “She’s happy, she’s cheeky, she’s determined,” he says in the second video. “She also has cerebral palsy and epilepsy.” BLOOM spoke with Bob about the process of illustrating his life parenting a child with a disability.

BLOOM: When did you start drawing the story of Poppy’s birth?

Bob Moran: The idea came about when she was two. A newspaper colleague suggested I create a long-form piece done in cartoons that would be something autobiographical. It would take a difficult subject and do it in cartoon form to make it more accessible and easier to talk about. I said the only thing that would be suitable is the birth of my daughter. But to begin with, I really didn’t want to do it.

BLOOM: What were your concerns?

Bob Moran: I didn’t feel comfortable about sharing something so personal and I was aware that I hadn’t dealt with a lot of it myself. I was nervous about confronting the memory head on like that. Another thing that worried me was the awareness that families who’ve been through this all have a slightly different story, and their children have different diagnoses and levels of ability, and I was aware that it had to be sensitive to all of that. Ultimately, I realized that the emotional journey everyone in this situation shares is similar.

BLOOM: The video is so moving because it’s so candid. You contrast how you imagine fatherhood will be with the shock and helplessness of learning your daughter is fighting for her life.

Bob Moran: Not many people had heard that story from a dad’s point of view before. A lot of the correspondence I got was from other dads saying it really helped. You shouldn’t generalize, but I think men tend to find it harder to face up to the emotions of things like this, and there’s that sense as a dad that you’re supposed to be strong and hold it all together. That struck a chord with dads and enabled them to start talking about the fact that they felt the same way I did. They felt quite helpless.

BLOOM: What was the process of creating the illustrations?

Bob Moran: Recreating it in so much detail was like a form of therapy for me. The first thing I did was look at all the photographs we had taken. We’d taken a lot of photos when she was born and then during the two weeks we spent in intensive care. I had deliberately not gone back to look at those. I had to look at them for reference, but also to help trigger my memories of how I was feeling. That, in itself, was very difficult.

It made me start to realize there were a lot of feelings I hadn’t processed. I had to work out a way of telling the story that dealt seriously with the emotions, but with a visual style that was gentle and accessible. I had to create myself as this central character that was slightly clueless and awkward.

BLOOM: Because you’re so honest, there’s so much humour in the story. I love the part where the nurse is basically ordering you out of your wife's room because you can’t cope.

Bob Moran: For a long time it was sillier. It went through lots and lots of versions. I worked on the whole thing for about eight months. I think in total I did over 200 drawings for it. For a long time there was more of that silly, outlandish humour. Then we figured we needed to strike a balance with that to hit the right emotional note, so we came back to sensitivity. We didn’t want to make it too silly.

BLOOM: Did you have dedicated time to work on this project?

Bob Moran: It was in addition to my regular political cartoons. It was a good change because it was a complete change of head space and subject matter. To be working on something completely personal and apolitical was refreshing.

BLOOM: But you were doing it on top of regular work?

Bob Moran: It did get stressful at points. More for my wife, Sally, because I don’t think either of us realized how long it would take. As the video explains, we were so busy with Poppy and our days were filled with hospital appointments and therapy. So in a way trying to create this project was very difficult to balance with being a dad and looking after her.

BLOOM: What is it about illustrations that enable you to convey emotion and ambiguity in a way that words or photos don’t?

Bob Moran: That’s right. You could tell the same story using photographs of all of those frames and it wouldn’t work in the same way at all. If you’re illustrating, you have total control. You decide what to leave out, which is as important as what to put in, and you can make things more ambiguous. You can amplify bits of emotion or focus on certain things. And you can add in certain bits, like the superhero bit. There’s something subconscious going on for the viewer who knows these are drawings that someone sat down and did, and that makes them feel more comfortable. They’re not looking at something real, and yet it’s making them think about something very real. They feel they can immerse themselves, but in a comfortable way.

There were certain moments where I didn’t want to make it explicit in terms of what was going on. For example, I didn’t want any words with the frame where I’m in the hospital and going to see Sally, and she’s crying in bed. It’s enough that you see the picture.

BLOOM: I think that also makes it relatable to people who have been in similar situations. As a parent, I can see myself in that image. What did you learn about yourself through the creative process?

Bob Moran: It helped in lots of different ways. It threw everything into perspective. It enabled me to really get my head around how far we’d come since those early days of her birth, and how well she was doing relatively, when compared with what we expected at the beginning.

Personally, it gave me an understanding of how guilty I had been feeling about the whole thing. I think this is true of a lot of parents who go through this. Part of you always feels like it’s your fault, or you could have done something to stop it. I think telling the story again in my own way—it didn’t make the guilt go away—but it helped me to accept that maybe it’s a natural feeling, and I shouldn’t let it worry me.

BLOOM: I also think that when you have to tell the story over and over, it sinks in that you really couldn’t have done anything.

Bob Moran: When I started thinking about how am I going to tell this to someone who doesn’t know me or about me, how do I make this relatable and understandable, I ended up telling the story back to myself, as if for the first time. And you start to realize, you know, that there wasn’t really anything I could do and maybe I did cope as well as anyone else would. I’ve always dealt with things by drawing them, ever since I was a child.

BLOOM: There’s one brilliant line where you say 'I just didn’t think I was strong enough,' with an image of you lying prone on the floor at home, after leaving the hospital. My son is an adult now, and I still feel like I’m not strong enough. Somehow, having a child with disabilities seems to show up all of my inadequacies.

Bob Moran: There are two aspects to that line. A lot of people will say to me ‘Yea, what parent ever does know what they’re doing?’ and that makes it relatable to everybody. At the same time, it means something very different to parents with a child with a disability or additional needs. It literally means you don’t feel like you have the inner strength to be able to do what the child needs, or what you want to be able to do for them—which, ultimately, is to take it all away.

BLOOM: Yes. I think that’s it. I always wish I could be better than I am. Or maybe I wish I didn’t have such wild, conflicting emotions about it.

Bob Moran: Before Poppy was born I felt like I had a rough idea of what I needed to be able to look after a baby. I felt I was equipped to do the pretty simple things—to give a home to live in and love them and be ready to take care of and teach them things. Then suddenly, it was like because I’m not a neonatologist, I’m not up to this. I can’t look after my daughter. I do pictures for a living. You’ve suddenly got these people who’ve spent 10 years in medical training saving her life, and it makes you feel so totally inadequate. It’s silly in a way, because you’re there, but you still feel like it should be you somehow.

BLOOM: You talk at the end of the piece about how Poppy, and the many health professionals in her life, are the real heroes. Did you feel happy with the medical care you received?

Bob Moran: That’s a bit complicated. Once she was transferred to the NICU, which is where the video begins, she received care that was out of this world. But everything that happened in the lead up to her being born and my wife being in labour was horrendous and really bad. Essentially, Poppy should never have had the brain injury. Sally was two weeks overdue and when we went to the hospital saying something is wrong, they wouldn’t let us see a doctor. So we’ve experienced both extremes of the health care system: the worst and the best.

BLOOM: What about the rehab services Poppy has received since?

Bob Moran: Overall we found it a bit of a mixed bag. Quite a lot of the therapy that she’s received we’ve had to seek out and pay for ourselves. What you get on our health service here is very basic. Last year she had one physio session that was covered.

BLOOM: One?

Bob Moran: We had to end up paying for private physio for her. The communication from the system to us has been very difficult, very bad at times. Certain things that we knew she needed we had to really keep fighting for and pressing for.

The system is disorganized and doesn’t make sense in a lot of ways. For example, she needs a Lycra suit that she wears to support her core muscles when standing and walking. So they measured her for the suit, then we had to wait six months for it to arrive. By the time it arrived, she’d grown out of it. It’s really ridiculous.

The one thing I thought at the time she was born was at least we live in a country where she’ll have everything provided for her, and the equipment and therapy she needs. But it hasn’t quite worked out like that. It’s really disappointing. I don’t think it’s to do with a lack of funds. I think the system is really disorganized.

BLOOM: Britain seems to be a difficult place to live as a person with a disability at the moment, with all of the cutbacks to home-care supports. There's also a perception that people with disabilities are 'working' the system.

Bob Moran: I think it is hard in this country. It’s a question of balance. There are things we’re willing to spend millions of pounds on that are totally not needed. Yet we’re not willing to make sure that disabled people have everything they need. Poppy has needed a wheelchair for over a year now and we just last week found out she can have one, we hope, in two to three weeks. Poppy can walk independently, but she’s really unstable, so she falls over all the time. She also tires quickly and can’t walk a great distance. Originally, when we were told it takes a year to get a wheelchair, we said how is that even possible? Why aren’t we doing something about this?

BLOOM: Has Father's Days been used to educate medical students?

Bob Moran: It’s been used to train doctors and nurses in Britain who are going to work on neonatal wards. Quite soon after the video came out, I had a lot of neonatal doctors get in touch with me to ask if it would be okay to show it to their staff. It’s been shown at conferences all over the world, and translated into four or five languages.

BLOOM: Wow. That’s amazing. Can you tell us a bit about Poppy now, at age four? What does she enjoy doing?

Bob Moran: The latest thing is horse riding. Lots of people said it would be really good for her hips and her core strength, so we found a nice little stable near our home and we’ve been taking her every week. She loves being around the horses and touching them and the smell of them. It calms her down and makes her feel at ease. It’s really making a difference physically as she’s getting stronger and has better balance. She has a little riding hat—it’s the smallest size they make, and it’s still massive.

She loves drawing as well. She likes to get the paint and splash it around on the paper. She likes to come up to my studio and see what I’m working on. When I’m painting, I have sheets of paper where I mix the paint up next to my drawing board, so it’s a mess of colour. She always says she prefers that to the picture I’m working on.

BLOOM: That's funny. How does she get along with her little brother?

Bob Moran: They have a good relationship. They’re very similar in development, because Poppy was so delayed with speech and movement and Dillon has ended up being quite ahead because of the work we’re doing with Poppy. He’s listened to all of the speech therapy. Some people think they’re twins because they’re so similar.

BLOOM: How would you describe your new video called Father’s Days at Sea?

Bob Moran: It’s a sequel, a way of showing where we are now as a family and, in a way, how far we’ve come. It’s more lighthearted than the first video, and doesn’t have the same emotional punch. What was important for me was we were genuinely quite scared about going on holiday. I hoped that other families would watch it, and feel like maybe they can go on holidays, too. It won’t be perfect, but perhaps it will be okay.

BLOOM: Do you plan on doing more videos in the series?

Bob Moran: It depends on if the newspaper wants more. I do have some other projects on the same theme that are more fictional.

BLOOM: Writing about parenting a child with a disability?

Bob Moran: Yes. Writing the first video made me reflect on where I wanted my career to go, and how I wanted to use my talents I guess. I found it so much more rewarding than just drawing politicians in a very cynical way. Doing this actually affects people in a real way, and I need to do more of this. What I’ve done so far has reached a lot of adults and maybe helped parents in similar situations. Maybe people who didn’t know anything about this world have gained a different perspective on it. What would be even better is if I could do the same kind of thing in a way that worked for children.

BLOOM: Like as a children’s book.

Bob Moran: A book that everyone could have in school that would help them talk about disability and not be afraid to ask questions. That would help children understand what a disabled child had gone through and what their strengths are.

BLOOM: What do you hope people take away from your videos?

Bob Moran: Overall, I hope people feel uplifted generally and reassured that however useless you feel as a parent, you’re doing okay. There’s no right or wrong way. As long as you love your children, you’re doing a good job. Don’t beat yourself up is one of the main messages I’d like to get across. Don‘t be hard on yourself. If you’re in this situation, everyone is doing their best, and no one can do everything.

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In Brazil, a 'disabled chick' draws about stigma, love

On her blog, Vanessa Krubniki tags this comic under "love," writing: "...I have worried myself sick about how I am supposed to convince someone to date a disabled chick who can't even tell a joke. You might think that there are people out there who enjoy a darker approach to things and I supposed that is true, but the fact is, everyone likes fun people. And I, I have too much real life in me, too much blood under my fingernails."

By Megan Jones

When Vanessa Krubniki creates a comic, it’s more than just a drawing: it’s a lesson, a memoir, an emotional outpouring. The 23-year old psychology student from Curitiba, Brazil has spinal muscular atrophy, and uses her artwork to capture what life is like for young women living with physical disabilities.

The comics follow a character named “Cassie Q,” detailing her interactions with family and strangers and her thoughts about everything from love and work to depression, stigma and self-esteem.

Originally a painter, Vanessa first tried to her hand at drawing comics about a year ago. “It started off as a game,” she says. “Something to do for fun.” But as she showed more friends her work, they encouraged her to post her drawings online.

Today, Vanessa regularly shares her comics on her blog, which has gained followers from Canada, the United States and Brazil, among other places.

She readily admits that while her character has a different name, they’re very much the same person: everything that happens in her comics has happened to her in real life. For that reason, her artwork is extremely personal. It allows her to vent about the things that frustrate her, and helps her to process the circumstances that make her sad.

The personal nature of her work has resonated with readers. Vanessa says she’s spoken with other young people with disabilities who have connected with her online after checking out her blog. “Lots of people say the comics make them feel understood,” she says. “It’s really special to hear that.”

Vanessa knows what it’s like to feel like an outsider. In Brazil, she says, disability is largely misunderstood, and many people with special needs lack support.

She’s not the first to make this observation. Cities in Brazil have long been criticized for their low level of physical accessibility. According to a 2015 BBC article, only seven per cent of working-age Brazilians with disabilities have completed any kind of higher education, and only two per cent are a part of the workforce. And as NPR reported the same year, a poll conducted by IBDD, one of the country’s disability advocacy groups, revealed that a staggering 80 per cent of people with disabilities didn’t feel like respected citizens in their home country.

When these factors pile up, Vanessa says, many young people with disabilities wind up feeling alone. She herself isn’t in touch with any local disability activists, and says she only has one other friend with special needs who she talks to regularly.

In order to cope, she, like her readers, has turned to the Internet to connect. Vanessa says she reads articles by disabled journalists which help build up her own activist framework.

“Hearing life stories from the perspective of someone with a disability validates my experiences,” she says. “I often feel very disconnected, but reading these things, I get a sense of belonging, and I can connect my experiences to a larger oppressive system.”

Knowing that others are looking to her comics as a point of relation, Vanessa fears that her art isn't uplifting enough. There’s a pressure on people with disabilities to be inspirational, she says, particularly if they’re building a public presence. But a sunny outlook isn’t always realistic. There are days when Vanessa finds it difficult to be hopeful, and she doesn’t shy away from that in her work.

As a result, her comics can sometimes seem bleak. In a description that accompanies her post “The Complicated Life of a Bug,” for example, she writes: “Everyone has their little web of aggravators, things that stop them from moving forward…. Sometimes with disabilities, this web gets so detailed and so layered that it might seem impossible to move. I fear that one day it will be impossible to move.”

With posts like these, Vanessa says she occasionally worries that she’s reinforcing the idea that life with a disability is automatically a bad one. “I think many of my experiences with a disability have been negative so far,” she says. “But that’s not how it has to be. Society has to change.”

The topics she addresses most frankly, perhaps, are sex, intimacy and love. Like many other 20-somethings, the concept of dating takes up a lot of mental energy: one of her biggest hopes right now is that she’ll find a romantic partnership soon. Unlike most though, she doesn’t feel she can’t openly discuss her needs with very many people. In fact, most people, Vanessa says, assume she doesn’t care about sex or relationships.

“It gets overwhelming when you have a very central longing and you can’t talk about it,” she says. “People with disabilities don’t really have room to address those needs. My comics are a way to bring that out into the open.”

Whether it’s through expressing sexual desire, dissatisfaction with social structures or frustrations with family and friends, Vanessa encourages others to elevate their own voices.

“Young people with disabilities should take their power back,” she says. “Standing up for yourself is hard and can be very stressful. But sometimes you have to act against the status quo. If something isn’t working for you, don’t just let it go.”

The comic below, called Cassie's Folding is tagged under "depression." 

"In my life I have been folded. It's kinda like when it's simply not okay to be you, and not even knowing what to say or what to dress, because any sense of confidence has been systematically chopped off. In my life I have been folded. In half, and half, and half, and half. And what I had left was a Q for a signature."

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A novel drawn from light and loss

By Louise Kinross

In 2011, cartoonist Tom Hart was living an idyllic life in Gainesville, Florida. While his wife Leela, also a cartoonist, worked on a book, he spent time with his daughter Rosalie, not yet 2—bike-riding, visiting ducks in the pond, tracking the moon, painting watercolours on the back-porch.

Then Rosalie died suddenly and unexpectedly.

Tom did what he'd always done: he began writing, furiously, and then drawing, about it. His graphic memoir Rosalie Lightning was released last month.

BLOOM: How soon after Rosalie died did you start writing about it?

Tom Hart: I wrote to stay sane pretty instantly. When I wasn’t walking around the neighbourhood with my wife, or sort of lying down on the grass or in bed, I was writing mostly. In some cases it was just recording what was happening. More often it was trying to understand something and stave off despair.

We did a bit of travelling to get out of town—because town was so hurtful—so I kept the writing and the notebook going. After about five weeks I had a binder of notes. I felt it was time to stop, partly because I was repeating and partly because what happened at the end of the book was that this little girl came up to me, and that was a sign that I should stop writing.

I took some time off and then began the process of turning it into a narrative, and that took about three-and-a-half years.

BLOOM: What role did drawing and writing play in grieving for Rosalie?

Tom Hart: I’ve always used comics—this mixture of words and pictures and cartoons and boxes as a way to navigate the emotional world. Even as a child my first memory at age seven or eight is of tracing Peanuts—Charlie Brown. I later realized that I was really drawn to the emotional content: people were screaming and fighting and there was lots of punching. It was a way I learned to comprehend the larger emotional world. So unconsciously, throughout most of my life, I’ve always taken whatever I’m feeling and tried to wrestle with it on the page.

BLOOM: How did drawing help you focus on all of the details you wanted to remember about Rosalie?

Tom Hart: I wound up wanting to focus on how lively she was, and how the time up till she died was so fun and so magical. I wanted to recap it and recount it for people. It seemed strange, when I looked back at it, to want to draw all that stuff. In a way I think I was trying to summon her back. And again, since I have drawn cartoon characters for so long, it seemed like the most direct way to try to capture her spirit somehow, or to connect to her spirit.

BLOOM: What’s the main theme of the book?

Tom Hart: It’s trying to show a person’s mind as they work from a state of complete shock to some sort of comfort or integration with their new experience. Since reality has been so uprooted, it’s trying to find signs from outside of how to exist in this new reality, of how to work within a new world.

BLOOM: It seemed like the book was alternating back and forth between the beauty and pain that comes from the mystery of life. So on the one hand, we see Rosalie’s reactions of wonder to things like the 'big moon' or how acorns contain what will be a tree. But on the other, we feel your unbearable loss when she dies.

Tom Hart: It’s nice that you came away with that. I did the book very intuitively. Had I thought through what you just said ahead of time, it would have been a good structuring device. The world is big and full of joy and sorrow and bouncing or oscillating between the two is what I was trying to capture. In doing the book I really just followed my nose.

BLOOM: I think when a child has a disability, or an illness, or dies, it’s hard for parents to accept the random nature of it. In your book you go over the events immediately prior to Rosalie’s death. It seems like you’re trying to decipher the 'why' or the meaning of it. Was there a cause? Should you have anticipated it? Can you talk about that?

Tom Hart: The world is full of random, horrible circumstances and there’s not a lot of justice in the world. There’s not a larger justice in the world. To be honest, in my case I think I was able to do this book because it was so random. I think if she had had some prolonged illness, or worse, if there was a violent cause of her death, or someone to blame, I would have been a lot more immobilized.

I think a lot of what the book was about was trying to come to believe that there was cosmic purpose, because it seemed so cosmically ordained in some ways. In a weird way it was empowering that it was random and sudden and without an immediate way to comprehend it. There was nobody to blame and no blame on a personal level. That enabled me to stay focused on her spirit and on my moving on.

Early on I intellectually understood I needed to accept it, because there was no going back. It happened. Of course it’s very easy to say things intellectually, or to write them, or in your best moments to believe them. More often than not our emotional bodies are so much slower. For me I knew I had to find a way to exist with Rosalie in my memory.

It took me three years to incorporate those five weeks of writing—the lessons and ideas that came out. At the end of finishing the book I do feel like I’ve integrated that experience, so that I no longer live in denial of it.

BLOOM: Over time did your need to find a meaning for the tragedy change? Or did you just stop asking the question?

Tom Hart: If there’s a larger meaning, I can’t comprehend it. I’m not a religious person, but I have an inclination toward the spiritual. Every major religion in its own way says you can’t know God’s reasons. It’s too big for our consciousness. It’s unknowable.

And the sad thing is that it’s mostly injustice down here on the physical plane. At some point everybody has to find the balance between seeing that clearly and moving on anyway. They have to square that with their own drive to stay alive and care for their loved ones.

BLOOM: Time is an important theme in the book.

Tom Hart: Is it? I haven’t read the book in a while.

BLOOM: I guess because before Rosalie died time was moving in the way you expected, and you had a sense of how it would continue as she grew up. You had dreams of her future.

Tom Hart: There was this horrible ending of what seemed like ordinary life. Up till then, time made sense. When this happened, there was no time. Time became different. There was only 'before' or 'after,' and how time was measured seemed different.

BLOOM: There’s a panel where you write 'the hospital – no I don’t like that part.' Were the professionals at the hospital compassionate in the care they gave you?

Tom Hart: There was never any hope, but for the most part everybody was compassionate.

BLOOM: Your depiction of Rosalie brings her to life. She’s such a character—from the way she spoke, to the way she moved, and how she brought what you read together in books or saw in movies into her own life.

Tom Hart: That’s really nice. It was part of my plan, but not the biggest part. I think mostly the book was me trying to get through it. But early on someone said to me that a person never dies, or their spirit never dies, until the people they’ve touched die.

It made me realize I had an opportunity to keep her spirit alive, especially in the way she was so alive for me, so vivacious. So it’s something I wanted to do—not exactly capture her spirit, but have it come through on the page.

And I needed to have that connection with her. It was very strange to draw her alive and happy. It was such a contradiction. Drawing those images was fun and delightful and horrible.

BLOOM: Did you have any hesitation about writing such an honest book?

Tom Hart: I didn’t have any hesitations about it. I’d been making books or stories for so long and I was so utterly broken open for that entire time that it didn’t matter whether or not it was too revealing or I was being too honest.

BLOOM: What do you hope people take away from it?

Tom Hart: I think I joked to another interviewer that I have such a long history of no one reading my work that I don’t have many expectations at all. I needed to do the book for my own sake and it really helped me in my grieving.

I think I needed to integrate the experience so it was no longer something I denied. I intended to do that in the way I’ve most dealt with the world, which is through writing and drawing.

For three years I was forced to focus on that time when my life changed so dramatically and become that new person. I became the person that has this in his past and has this experience in his heart. In general I did the book for my own healing.

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