Photo of Jennifer Nunes (left) with son Dominic
By Louise Kinross
When Jennifer Nunes put her son Dominic to bed one night in 2018, he was a happy, healthy baby. So she was terrified to find herself riding in an ambulance with him the next morning. He’d suffered a severe stroke. Making It To Monday is Jennifer’s memoir about how she and her family coped. Dominic was hospitalized for rehab at Holland Bloorview twice—first after his initial stroke and then after a major brain surgery. In a bid to stop what had become uncontrollable seizures, one hemisphere of his brain was detached from the other. We talked about how Jennifer, who is a social worker, found herself on the receiving end of care.
BLOOM: Who did you write this book for?
Jennifer Nunes: I wrote this book for any parent or caregiver that was going through a difficult time. When I was at Bloorview I went to the library and looked for a book that would be authentic and honest about the darkness and the fear, but which would also give me hope to hold onto, from the parent perspective. I couldn’t find anything. So I decided I would write it, and maybe we could make meaning from why this happened, and also help other people.
BLOOM: You had worked as a hospital social worker. What was it like to be on the receiving end of care?
Jennifer Nunes: My husband doesn’t work in health care so it was an interesting dynamic. I had an advantage in that I had a knowledge of the language and some of the terms and even the physical space seemed more familiar to me. Where it was a drawback was where I knew too much and made assumptions very quickly that maybe weren’t emotionally helpful to me. I remember early on we were pulled into a side meeting with a doctor and a nurse practitioner and a social worker and I thought: ‘Oh God, they’re going to tell us he may die.’ Because I remembered having those meetings with families.
BLOOM: Tell us a bit about Dominic now.
Jennifer Nunes: He’s five years old and in senior kindergarten. He loves anything that moves: cars, trucks, trains, airplanes. He loves building things with Magna Tiles. He plays with his sister and is very social. He loves to go for walks outside and be in nature. Throwing rocks in the water is one of his favourite things. He’s talking and he uses an ankle-foot orthosis and a wrist splint.
He had left-sided weakness after his stroke, and that increased a bit after his brain surgery. He also has no field of vision left of centre in both eyes, as a result of the surgery. So his picture of the world stops at his nose. His acuity for seeing things far away is great, but he has a very narrow field of vision. It makes it challenging in the community if someone’s walking on his left side or if he’s in an unfamiliar place. If he doesn’t see something on the left he’ll walk into it. Now we make sure he’s scanning his environment.
BLOOM: Turning his head to pull more into his vision?
Jennifer Nunes: Yes. His vision loss also impacts his processing speed because listening to something and scanning the room at the same time takes more energy. Before he wouldn’t say anything but now we’re helping him advocate for himself. If someone asks him a question and he has trouble word-finding he may say ‘I’m thinking,’ or ‘Give me a minute.’
BLOOM: You went through repeated traumas. What period was most challenging as a mom?
Jennifer Nunes: There were different periods of time that were extremely challenging, but in different ways. The stroke was a shock. There was no warning. That was horrific and terrifying.
The seizures started without warning, but it wasn’t as abrupt as they didn’t impact his functioning immediately. They grew worse over time. It was a different kind of hard because we went in with our eyes open. I could research and find out about the hemispherectomy surgery, and I knew Bloorview from our first stay. The difficulty was we were exhausted. What scared me later on was what if this surgery doesn’t work to stop the seizures? What if it isn’t effective? Making that decision was really hard.
BLOOM: What strategies helped you cope with such extreme situations?
Jennifer Nunes: The biggest thing I learned from my son’s stroke and hemispherectomy was I needed to let stuff go. I was a very Type A person and I liked to do things myself. If I asked for help I thought it meant I can’t do it. I had to change that mindset, which was so detrimental to my own wellbeing. I had to allow myself to accept help from others. If someone said ‘Can I do your laundry?’ or ”Can I bring dinner?’ I had to say ‘Yes,’ because I was so tired and scared and all of my energy was focused on my child. If you have help, accept it.
The other thing that was really helpful was I didn’t waste any time in getting connected with the online parent community. The downfall of that is that you hear everyone’s stories, and sometimes there isn’t a happy ending. But there’s a benefit to knowing we’re not alone. I found Facebook groups for hemiplegia and stroke and pediatric epilepsy and even for the specific surgery Dominic had. Knowing we exist and we’ve found each other gives a sense of camaraderie.
BLOOM: Did you learn practical things you couldn’t learn from a professional?
Jennifer Nunes: Yes. Someone would say ‘I’m noticing shoes that work well with an AFO and this is where you can get them.’ Or people would talk about advocacy and navigating education. That’s been my biggest hurdle.
A lot of parents like myself struggle with being confrontational because we don’t want our child to be ostracized. I feel like I’m at battle every time I ask for something for my kid that any neurotypical kid doesn’t need. Staff see his wrist brace and AFO but what they don’t see are the vision loss and his processing speed.
BLOOM: You wrote that it’s important for parents to acknowledge their emotions during a medical crisis. Is it a matter of saying ‘I feel angry?’ or ‘I feel helpless?’
Jennifer Nunes: Yes, ‘I feel angry and that’s okay.’ I write about a conversation with my husband when I was crying because I didn’t want to go back to Bloorview for a second stay. I didn’t want to shower in a shower that other people use. Or have people walking into our room all night. I didn’t want to live in hospital during Covid and be away from my daughter. I hated the idea. I had to give myself space that this sucks.
And yet, at the same time, I know I have to do it, and I’m choosing to do it. I’m so grateful I have the opportunity to go to a world-renowned hospital. It’s allowing the space for both truths versus just living in one or the other.
BLOOM: You said you were afraid your emotions would consume you.
Jennifer Nunes: We worry that it’s a Pandora’s box, and once we open it, we’ll never be able to close it. But based on my training and experience, when we acknowledge the things we’re trying to avoid or fear, they become validated and normalized.
Think of us in a room talking. There’s a giant purple elephant. I could say ‘Don’t look at or think about the elephant,’ but both of us would probably be thinking about or looking at it.
Once we acknowledge the worry, the uncertainty, the anguish, we don’t need to focus our attention on it so much. It loses a bit of its power. We accept that it’s there, we acknowledge how much we don’t like it, and we can turn our attention to something we want to focus on.
BLOOM: In the book you ask your doctor for a referral to a therapist, and that therapist was helpful.
Jennifer Nunes: The number one indicator of successful therapy outcomes is not the type of therapy you do, it’s the fit between therapist and client. When I meet a new client, I tell them ‘I’m not everyone’s cup of tea, and you need to be comfortable with who you’re talking to.’ If you do one or two sessions and the chemistry isn’t there, it’s my job to help you find someone that is a good fit.
Parents often feel like they don’t have permission to try different therapists. I’ve had three to four therapists over five years and they all had benefits. You have to find someone you can grow with over the long term. You wouldn’t buy a pair of jeans before trying on a few to see if they fit okay. It’s the same with therapists.
Journaling is something else I found helpful. I would write something down like ‘I forgive myself. I give myself permission to feel all the feelings today. And I choose to focus on joy.’
Movement and exercise can be medicinal. In 2020 I was under so much stress that I would exercise and then when I reached maximum heart rate, I would burst into tears, with a freaky sounding cry. I had no control over it, and didn’t know what was going on. My therapist said it was primal: Your cortisol is gone and you’re allowing yourself to fall apart. I felt a sense of relief afterwards.
BLOOM: You write about something called intentional acceptance. What is that?
Jennifer Nunes: It’s acknowledging that something sucks and there are things we need to grieve, and accepting that it is what it is. And choosing to focus attention on any joy we can find. I started a gratitude practice where you think of three things you’re grateful for each day. It could be ‘I got 3 sips of coffee while it was hot.’ Or ‘I’m grateful the day is over and it’s bedtime.’ We need to train the brain to find the good.
BLOOM: What kind of care from health professionals here did you find supportive?
Jennifer Nunes: Somebody that was willing to tell me like it is, good, bad or whatever. Someone who listened and validated what I was saying. And someone who felt like they were on our team.
I have a memory of that. The last time we came to Bloorview we got a discharge date that was based on policy. As soon as I heard the date, I knew there was no chance my son would be ready then. He just had major brain surgery. So I shared that in a meeting and afterwards certain therapists came up and thanked me for speaking up. They said when parents don’t speak up, it’s harder for the therapist to advocate. It really felt like we were on the same team. There was a feeling of allyship.
BLOOM: What could we do better?
Jennifer Nunes: It may seem like a small thing, but when your child has a brain injury they talk about how sleep is so critical for the healing brain, yet it was challenging to have a room with someone that was on a similar sleep schedule. Or when we had a private room I would put a sign on the door that said ”Baby sleeping, please don’t knock but you can come in,’ but sometimes having people respect that was a challenge.
I think there could be more support helping parents prepare for the advocacy they’re going to have to do when they leave Bloorview. Bloorview is an amazing place. It’s very safe, no one is judging your kid for having a disability, and everything is accessible. Then you go into the community and that’s not the way it is. So perhaps preparing parents better to be advocates.
BLOOM: You benefited from talking to parents on the unit.
Jennifer Nunes: I would sit in the dark on my laptop every night until a couple of moms encouraged me to come out and connect, and that really made a difference. I recognized that I’m not alone. The dining room on the unit was fantastic as an important place for us to meet and sit and chat. Or in the playroom. There were communal spaces that were important and well utilized.
BLOOM: You wrote about how your daughter experienced her own painful adjustment to her brother’s stroke.
Jennifer Nunes: Trauma doesn’t just happen to one person. It happens to the whole family unit. This is why it comes back to us as parents to do the work and accept the spectrum of our emotions so we can create that kind of space for our kids. I found a book helpful called Sharing Love Abundantly in Special-Needs Families. The author talks about how it’s not about quantity when it comes to spending time with our kids, it’s about quality. So we don’t need to be with our kids 100 per cent of the time. But they need us to be present for the time we’re with them.
We need to recognize that there is no cure for this trauma. It’s not something we will get rid of. In that way it’s similar to grief. We learn to live with it. Trauma doesn’t go away, but we learn how to grow around it. As Gabor Maté says, it’s not the event, it’s what happened to your body as a result of that event.
My therapist reminded me that this isn’t something that’s going to disappear because I’m ‘doing all the right things.’ Some days I’m going to have waves of emotion, and waves change. If the tide is out, some waves are really small. Some waves are tidal waves. But they always go back out into the ocean. So it’s learning to ride the waves versus trying to eradicate them.
BLOOM: How has your experience as a parent of a child with a life-threatening condition influenced how you work as a therapist now?
Jennifer Nunes: Parents feel isolated and alone when going down this path, and unless you have lived experience, it’s hard to understand. I didn’t have the same perspective when I didn’t live it. I’d go home at 4:30 and live my life versus going home to continue the medical process with my child. When I tell a client I have a child with special needs, without disclosing any details, they’ll say ‘I want to work with someone who gets it.’
BLOOM: You called the book ‘Making It To Monday’ and that initially refers to your first weekend in hospital with Dominic, where you didn’t know if he would survive. Do you ever use that idea as a coping strategy in other ways?
Jennifer Nunes: It’s two-fold. Yes, Making It To Monday was about our original trajectory. I also follow a positive psychology model. We spend so much time trying to get to the end of Friday, or thinking ‘I’ll be happy when I’m successful,’ when we know that the inverse is true. We need to get happy with the effort and not the output. But more than that, we need to celebrate ‘starting.’ Dominic’s journey is not over but I don’t focus on the end result. I don’t have control over what happens at the end. But I can make it to Monday and find a way to enjoy where I am and what’s coming.
Like this story? Sign up for our monthly BLOOM e-letter. You’ll get family stories and expert advice on raising children with disabilities; interviews with activists, clinicians and researchers; and disability news.
Photo of Marcy White with son Jacob By Marcy White Food insecurity is something I never thought I’d experience. My family doesn’t struggle on a fixed income, and my 20-year-old son Jacob isn’t a fussy eater. He is medically fragile, and relies entirely on liquid nutrition. Since birth, Jacob has been fed through a tube...
By Louise Kinross Frankie is an 11-year-old Irish girl who feels like an alien. She can’t stop talking and blurts out things at the wrong time, earning her the nickname “Freak” at school. “It feels like I’m speaking a different language,” she tells her mother. Frankie is the protagonist of Frankie’s World (image above), a stunning...
Leave a comment