A mother learns to make room for grief and joy
By Louise Kinross
In 1999, Deborah Covell Fletcher (photo left) gave birth prematurely to twin girls Emma and Quinn (photo right). They were identical, except Quinn would soon be diagnosed with cerebral palsy and many disabilities. The sisters are now 23. This year Deborah published a book called Finding your HEY!, which is described as "a crash course in braving grief and embracing joy." In it, she writes about the heartache she felt as a young mom with twins on strikingly different paths, and how she learned to make space for difficult emotions while cultivating happiness. She also interviews other people who have struggled with grief for different reasons. The book is written in the tone of a dear and funny friend.
BLOOM: Why did you want to write about both grief and joy?
Deborah Covell Fletcher: To me they're a little bit of the flip side of each other in terms of human emotions. Grief is about unmet expectations or loss. It isn't something we get over, so I was interested more in how we carry it. I wanted to learn how to live with the grief and still feel joy. We move in and out of these states of emotions quite naturally, but we can also influence them with our thoughts and what we choose to focus on.
BLOOM: Can you tell us a bit about Quinn?
Deborah Covell Fletcher: She's something. She's a force to be reckoned with. She's very funny and has a great sense of humour. She's been able to access that more recently since she got a communication system. When she was 16 she had spinal-fusion surgery, which gave her the stability to be able to sit up straight in a chair and communicate through two sensors on either side of her head rest. She has no fine motor skills, so she couldn't use a system with her hands, and she couldn't use eye gaze because she's visually impaired.
The wonderful people at Holland Bloorview in the communication and writing aids department worked with us and the team at her high school and came up with a system she can use with just turning her head. She graduated high school at age 21 and then we were released into the adult world and there was pretty much nothing for her.
Five of us parents got together and started a day program in Toronto called Let's Grow which launched last September.
BLOOM: In your book you wrote about how one source of grief when you have a child with a disability is comparison. You said your daughter Emma would achieve a milestone, like walking or talking or going away to university, and Quinn wouldn't. What are some of the ways you learned to manage that grief over time?
Deborah Covell Fletcher: In the beginning I was really floundering. As I wrote in the book, when Emma took her first steps she walked into my arms and I had to hand her to Steve and run into the kitchen and cry, which is fair. I'm not sure that we can either delay or eliminate those 'comparison feelings.' But a fascinating part of our brains is that we tend to normalize things, so it becomes 'This is who Quinn is.' It's not looking and thinking 'She should walk and talk.' It's 'She's Quinn and this is what Quinn does.' Human beings are adaptable, and we can adjust to changes and get used to them over time.
In terms of making a more conscious effort, I acknowledge my grief. I'll say 'Oh, I'm sad now that Emma is doing something really fun and Quinn can't do it.' But then I'll talk myself into moving on and thinking about something that gives me great joy and happiness. Maybe it's about something Quinn has done that made me laugh, or pride in her accomplishments which are beyond what I ever expected.
The next step is to find something that makes you laugh out loud. It could be something related to my girls or finding an unrelated YouTube video that makes me laugh. We know there's a physiological response when you laugh that actually lifts that heavy, heavy grieving feeling. It doesn't mean you've gotten over it, but it makes your load lighter. I talk about the benefit of laughter yoga in my book.
The danger lies in when we compare and then we feel sad and we can't get out of that state.
BLOOM: You talked about how you used to be on high alert for mothers pushing double strollers, because seeing twins was particularly painful.
Deborah Covell Fletcher: Yes. Then one day, as I write in the book, I spotted a double stroller and a voice in my head said 'Just don't look.' I didn't, and instead I laughed out loud. I realized I had the power to choose to avert my eyes and change my focus.
BLOOM: How does exercise help?
Deborah Covell Fletcher: These are all ways we can choose to elevate our emotional state. Exercise, eating right, getting enough sleep and connecting with people that you love and who love you. In the first few months after my daughters were born I was alone because their dad Steve went to work at 7 a.m and came home at 7 p.m. and I had two babies to feed and take care of. I was housebound because Quinn couldn't handle being in a stroller for the first year.
So if Steve came home, or someone else dropped by, and I wanted to pop out to get some milk, I found myself running out the door, even though I was never a runner and I couldn't stand running. My body was craving exercise as a reaction to being so sedentary. I eventually became a real live runner.
Now I do fast walking and that helps my emotional state. I find it's a great way to start the day and gives me so much renewed energy and a better attitude. More than anything it's going outside and getting sunshine every day. Of course, that's a challenge when you have a child with special needs. I still set my alarm for 3 a.m. to roll Quinn over.
I've always been very open and I share what I'm feeing with friends. So I credit my friends for most of my mental wellbeing.
BLOOM: You talk about journaling in your book.
Deborah Covell Fletcher: It engages a part of your brain in terms of recording memories, but it also helps you to understand what it is you're thinking and feeling. It's different than just thinking about what you're going through.
BLOOM: It gives a structure to your experiences.
Deborah Covell Fletcher: It's seen as a form of therapy in that you're analyzing what you're feeling and working through it. It helps you to process it.
BLOOM: I imagine sometimes parents are anxious to write down what they're feeling.
Deborah Covell Fletcher: There's a sense that when you write it down it becomes more permanent and real. We tend to not want to feel bad, so we resist writing because we think it will make us feel worse. What's interesting to me is that most times it's the opposite.
One of the people I interview in the book keeps private journals that no one will ever see. It doesn't have to be perfect, or well-written.
In my mind, when you're journaling, you're actually empathizing with yourself: 'Hey, I can see you've got some big feelings, let's talk about them.' You end up being more honest and having more clarity than if these thoughts just go round and round in circles in your mind. It can help you come up with solutions to solve a problem. You also have a written record to come back to in the future and say 'Look how far I've come.'
BLOOM: I really liked what you wrote about how unhelpful social media can be. You note it can increase feelings of sadness, isolation and Fear of Missing Out (FOMO), and I liked this tip you included:
FOMO could be replaced with JOMO (joy of missing out), HASH (happy at staying home), or STAN (sorry, taking a nap). You get the idea. Being "present" and living in the moment without thinking about what anyone else is up to is the secret to embracing joy. Spending time with yourself and working on making the grass on your side green or simply enjoying the dandelions becomes all you need to feel content.
Deborah Covell Fletcher: It may feel like admitting defeat, but we're hearing stories about all kinds of people who have turned off social media.
BLOOM: What are common myths about grief?
Deborah Covell Fletcher: The big one is [Elizabeth Kübler Ross'] stages of grief.
BLOOM: I guess because it sets an expectation that you will move in a linear way through emotions, when in fact you can be jumping all over the place and back and forth. It also implies that you reach an end state.
Deborah Covell Fletcher: It was written for people who are facing a terminal illness, but has been applied to everything.
Everyone grieves differently and at a different rate and in their own way. The biggest myth is that you can compare your grief to someone else's and say 'You should be over it now.' You can't judge someone else's grief.
The other myth is that you get over it. You will never get over it. That's not a nice thing to tell someone in the early stages of grief, but it's a fact. It's not about getting over it. It's about learning to carry it and make space for it.
BLOOM: Your book is called Finding your HEY! What does 'HEY' mean and who inspired it?
Deborah Covell Fletcher: My inspiration is my dad. He had a heart attack and then a stroke when he was 46 and from then on he was unable to work. The stroke impacted his mental processing, so his life as he knew it was over. He became my poster child for living with grief. He lived until he was 82 and for the rest of his life he lived with grace, love and positivity. He chose everyday to live with humour and an 'Oh well, what are you going to do?' attitude.
The word 'HEY' came from the first time I saw him after he had his stroke. He had lost his speech entirely and his short-term memory. The night before I'd spoken to him on the phone, and I couldn't understand what he was trying to say because his speech was so impacted.
I was walking down the hall to his hospital room and he leapt out of his room with his arms stretched out wide and yelled 'HEY!' Imagine what that took for him physically and emotionally. He had a big smile on his face because I was his baby, and he wanted to make it easier for me. It became a symbol of his attitude.
I'm sure he had many moments of saying 'Why me?' But in that moment, the first time I was seeing him, he wanted me to know he'd be okay. When I experienced grief over Quinn's diagnoses I couldn't help thinking about him and the way he was living his life. I thought I have to find my 'HEY!'
BLOOM: What do you hope readers take from the book, particularly parents who are earlier on in their journey with their child?
Deborah Covell Fletcher: I hope parents feel a sense of community and that 'I'm not alone in this,' and also maybe a bit of hope. There's light at the end of the tunnel and we all have the capacity to feel better, it's just about getting ourselves there. I hope parents might learn some tactics from the stories that they can incorporate into their own life.
For me, at first grief felt like something outside of me and sitting on me. It was this big oppressive thing I wanted to get rid of. I didn't want to feel it anymore. I've come to understand it's a part of me and always will be, and now that's comforting in a way. Grief can co-exist with other emotions. I learned that I can take this in and I'll still be me. I can still laugh.
It's not that you're never going to be sad or feel anger about the circumstances that your child is in. Last week Quinn had Botox and the needles hurt like they've never hurt before, and that's really crappy. But half an hour later when I dropped her off at her program she squealed with excitement.
I think some parents may feel grieving is wrong, it's ableist. I'm not saying that disability is bad or wrong or sad. But I still have moments, like Quinn's Botox appointment, where I'm moved to tears, and that's okay. You can call it grief without saying there's something fundamentally wrong with your child. It's more about that they will live with challenges and actual pain, and situations where they're going to feel left out. As a new parent, I wanted to hear that what I was going through is normal. Parents may grieve for their former self. I had to give up my full-time job, as many moms do.
BLOOM: Did writing the book help you better understand your own story?
Deborah Covell Fletcher: Oh my goodness yes. One-hundred per cent. I need to read it every few months as it reminds me of what I've gone through and what I've learned.
Like this interview? 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.