Parenting is hard work. It challenges you in ways you never imagined you’d be challenged, forcing you to think outside the box and re-evaluate everything you thought you knew about pretty much everything.
Add a brain injury to the mix and the experience becomes even more complex and interesting. Jason and I always knew we wanted children. We discussed and imagined what our future family would look like long before it was time for us to actually consider making it happen. When Jason regained his awareness after sustaining a traumatic brain injury, both of us agreed that a family of our own was an even bigger priority. At 24, we’d become aware of our own mortality and felt willing to attempt the uphill battle we faced, adding parenthood to recovery for him, and caregiving for me.
Fast forward four years and two children later, and we’ve learned a lot about parenting and brain injury. We’ve encountered many challenges, and reaped many rewards. The biggest challenge has no doubt been fatigue. Parenthood is exhausting in and of itself, but the fatigue my husband experiences makes it hard for him to fully participate as a parent.
There are many times throughout the day where Jason needs to escape downstairs for a nap, downtime on his Xbox, or do laundry to get away from the noise and stimulation. This is hard on me as the parent who must care for both children alone.
Our toddler is also incredibly observant. She picked up early on that her Daddy is not able to keep up with her, that he struggles physically to dress or change her, and that he often gives up if she gives him too much of a hard time because of his impulsivity and lack of patience. She uses this to her advantage at every opportunity. The baby is now starting to move around quite a bit and no longer sits still long enough for Daddy to change and dress him. However, of the two, Daddy definitely does better caring for our younger child.
When things get rowdy around the house it takes a toll on both Jason and myself. Jason struggles to stay focused and calm, while I struggle to corral the kids on my own. Truthfully, I sometimes feel resentment.
This is why I work hard to maintain my mental, emotional and physical wellness through journalling, affirmations, meditation, goal-setting, strength training, and getting fresh air often. Jason and I both find it crucial to maintain good nutrition for our mood and energy, in order to function well as a family unit. We are also continuously improving the way we communicate, trying our best to ensure that we are being open and honest with each other so as to problem solve as effectively as possible. We are committed to seeking improved personal growth and increased knowledge.
But as challenging as parenting in our situation can be, the benefits of becoming parents far outshine those difficult moments. For example, both of us have become more efficient with our planning and organization. We’ve learned to laugh at the little things. We thoroughly enjoy new experiences with our children and watching their little faces light up. We’ve both begun to challenge our belief systems and have started really questioning our lifestyle and what messages we are sending to our children.
How do we want to raise them? Are we showing them to be compassionate to others and the planet? We’ve realized that the only way to raise smart, kind, compassionate, grounded, aware and successful children is to do our best to model that ourselves. We are both working on that every day.
In the end, parenting has been everything we hoped it would be and more, despite the added challenges we face. Those challenges have made us stronger and better parents.
I’ve begun to let go of the idea that parenting should be 50-50 between Jason and I, because despite knowing that it wouldn’t be going in, a small part of me still felt frustrated when he couldn’t step up and I knew that was up to me to fully accept.
The brain injury isn’t going away. But we are slowly learning tricks and strategies to help things run smoothly from day-to-day. Brain injury recovery is a lifelong journey, but having something to work hard for has pushed us into seeking the best way not just to survive, but thrive.
Melissa is a caregiver to her husband Jason who lives with a traumatic brain injury, and their two children Emma & Liam. She has authored two books, one an autobiography of her journey as a caregiver titled: ‘Getting Out of the Rut’, as well as a children’s picture book that promotes awareness of brain injuries titled: ‘My Daddy’s Brain’. She is currently working on a third book, training for a fitness competition, and speaks to various groups about caregiving, brain injury, communication, self-care and resilience. You can follow her journey on instagram @fit.mindful.mom or visit her website at www.melissajirovec.ca.
On March 18, 2016 my husband Davin sustained a concussion.
I write this on the one year anniversary of my husband’s injury. It brings an incredible mix of emotions. It has been the hardest year of our lives; financially, mentally, physically and emotionally.
We have cried more together this year than we have in our almost 20 years of time with each other. We have been in dark places this last year, individually and side-by-side. We have battled this brain injury together, but alone.
Concussions are invisible to most. The terms the ‘walking wounded’ or the ‘invisible injury’ have been given to concussions because the majority of people surrounding someone with a concussion aren’t aware of what that person is braving, or managing, or being held captive by. I’m not writing this post to educate you on what a concussion is, or to understand post-concussion symptoms, you can go google that.
I’m going to share with you my experience – as a wife, a partner and a best friend of someone who has been battling concussion symptoms for one year – with no win in sight, and still far away from the finish line.
It was three months into Davin’s concussion that I really started to feel the first feelings of being scared. Davin had concussions before, and I had seen at times some very bad symptoms from it. But they all cleared up relatively quickly and he became his regular self again. Last June his neurologist told us to expect at least a year for recovery, maybe longer. This news shook him, and me, and it set off a whole new dimension for us.
Up to this point, it was almost like I had watched Davin run into a brick wall over and over again, trying to make strides towards a little bit of improvement but getting stonewalled over and over again. After the neurologist’s prognosis, Davin stopped running into that brick wall and just starred at it instead. The light of perseverance, determination, optimism and strength started to dim. I could see him fall into a darker place, faced with the reality that it was going to be a long time until he got better, and no one could tell him how long it could be or what he needed to do to get himself healthy again. The frustration mounted, when all the therapies, practitioners, counsellors, specialists, supplements, food eliminations, (you name it, we tried it) failed to work.
Sure, some people may have seen some snippets of Davin’s behavioural responses to his concussion, but they didn’t get the full picture. Most people saw the same guy they always knew, only off work, and unable to do his usual athletic and social activities. That’s what makes it really hard for people to understand what happens to someone when they are living with a concussion. There is a side that is invisible and unseen by most, even close family members. It’s uncontrolled, reactive, irritable and mean.
I learned quickly that I could never take anything that my beloved dished out at me personally. Davin – the true Davin – did not want to react to situations the way he did but he lacked the filter or response to slow down, think and choose his words or behaviour before acting them out. The remorse and shame that follows an episode is equally hard to watch, as seeing Davin in emotional pain scratches and slices my heart over and over again. As his partner, there are so many times I felt completely helpless, and at times, still do, as though I’m stuck in the path of the concussion’s unpredictability.
The cycle of a concussion is vicious. It first brings physical and mental pain, then triggers emotional pain, which trigger symptoms, which trigger depression and so on.
Ah that word – depression.
I’m scared of that too. A common byproduct of a concussion is this whole other layer of depression and the inability to balance emotions. I again played spectator to Davin as his depression started to guide him, as his clarity on life was now being mismanaged by a giant bruise on his brain and a chemical imbalance. His brain wasn’t firing like it used to and tasks that those with uninjured brains take for granted – like going to grab some groceries – were daunting and debilitating, resulting in frustration and anger. This would then trigger intense fatigue, malaise and depressive states.
How would you cope? Eventually we learned the patterns and together started to identify the triggers. We figured out a management plan and I stood by my man and let him just be, as he needed to be in that moment. No judgement. No resentment. Just love.
By this point we were deep in the summer months in Whistler, B.C. We had decided moving to Toronto was the best choice for us. We were down to one income, with Davin’s Short Term Disability payments ending at the end of June, we had both kids in daycare and we were starting to see for the first time in our adult lives that if we continued like this we were going to be in some financial strife quickly.
Managing his medical and disability applications were also incredibly taxing on Davin, and in September I took over full management and advocacy for his medical paper trail. We were banking on Davin’s Long Term Disability claim to be accepted and which would drastically turn things around for us. But, after six months of waiting for a decision, they denied Davin’s claim. We appealed. They denied us again. We appealed again, and one year later we are still waiting.
So now what?
How do we keep going when the concussion and depression continue to hold my husband in captivity of who he once was. How do we raise our kids so they understand what has happened in the last year but remain resilient to times that have been trying for them, and us. How do we show them that we are strong and brave and that we will get through this? That concussion won’t beat us.
I can tell you what we did, and do everyday, to do our best to stay above the concussion and depression. We allow us the power to choose.
Whistler wasn’t working for us at that time, so we chose to leave and went on an adventure, that was healing.
We chose to move across the country to be closer to family for support and for filling our heart up when we needed it.
We choose to ‘move slow to move fast’, words spoken by a wise confidant that have made all the difference for us.
We choose to do only a little bit, and not all of it, and manage each moment for what it is.
I chose to not go back to a job that would take me away from my family 40+ hours a week.
I chose to start a business to create a different path for our family where we can create and grow in line with the pace that Davin’s brain needs to heal.
I have days where I feel so alone, that no one truly understands what it is like. I have days that are really hard. But despite the torture this last year has been, I have so many things I am grateful for that would not have come to be had this concussion not happened. I have learned, like to no level I’ve known before, what it means to be patient, to have compassion, to listen, to be brave, and to be present.
It’s taken me a long time to open up and allow myself to share the truth of my experience and allow myself to be vulnerable. I hope these words resonate with one of you readers.
Share my story.
Learn about concussions and talk about it, and keep talking about it. More awareness needs to be raised, more understanding about what those who suffer are going through. We need to show more compassion for those that live each day in a fog of their brain injury. We need more support for ways to manage and cope for those with the injury and the people that are by their side.
Erin is mom to two amazing children, and wife to an incredible husband. She has a love for travel, yoga,and bringing people together on issues that matter.
As the days go by I am ok, the best I can be given the situation. But when the night comes, it’s a different story. The feeling of loneliness sets in, and without knowing it, tears start rolling down my face. I can’t find the off-switch.
I keep wanting to wake up from this nightmare, but it’s our reality. For over seven years, this has been my new normal. I find myself planning my life and his at the same time. It’s really scary knowing that I have to make decisions about my husband’s health.
I have learned how to drive a mobile van and how to secure Norm in place in his wheelchair. We go to the movies, dinner and to Toronto to check out places like the Hockey Hall of Fame. I am trying to give Norm a normal life even though I know he won’t get any better.
It feels like I have put my life on the back burner and become a full time caregiver.
I’ve gone back to school and took a Personal Support Worker course to get insight to help Norm in his new life. I have taken training courses through the Ontario Brain Injury Association (OBIA), which have helped.
I am becoming more involved in Norm’s therapy. I assist Norm’s therapist with his treatment, such as assisting him in the therapy pool as he walks from one length of the pool to the other.
But I keep wondering what happened to the golden years we worked so hard to enjoy? How am I supposed be a loving wife when I am living on my own?
After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE
As a small non-profit, volunteers are a central part of how BIST is able to do what we do. Meet our Volunteer of the Year, Caregiver Category Kevin Redmond O’Keefe who for years has come to our office on the third Wednesday of the month, every month, to co-facilitate our Parent Support Group.
Thank you Kevin for all your hard work – you have made a big difference in the lives of ABI caregivers!
The reason I began volunteering at BIST: My sister had an acquired brain injury from a car accident 23 years age and I went to a support group for a couple of years at Bloorview. At the time Caron Gan was running the group and she asked me if I would come on as a co-facilitator. She said she wanted a gender balance of facilitators and that having a family member facilitate would be a good idea. A couple of years ago when I found out that Bloorview wasn’t able to do the group and BIST offered to take it over, it seemed as a natural progression. The important thing for me was that the group continue.
If I could pick any job in the year, I would pick: For 25 years I’ve been a TV producer making documentaries for TV stations. I’ve been lucky that I usually work on projects that I’m passionate about. Right now I’m trying to decide if I want to work at a TV station or go out on my own and start my own production company. So I guess if I could choose, it would be to start my own production company and only work on projects that I love.
I have an (irrational or otherwise) fear of: I don’t think I have any specific fears. I’ve traveled pretty extensively and worked in some pretty dangerous places. e.g. during the civil war in Sri Lanka or in the capital of Honduras which, at the time, was the murder capital of the world. This past year I just returned for working in Haiti which was challenging. I guess I have a fear of trying to figure out what I want to do for the rest of my life (see previous question)
My greatest assets as a volunteer are: I think I’m a good listener and I really enjoy getting people to share their stories. Caron Gan gave me good advice when I first started to volunteer– she said that my job was not to solve people’s problems but to get them to share their story. That took a lot of the pressure off because sometimes I felt bad if we didn’t solve everyone’s problems during the meeting. Since Caron’s advice during the group I look at the people who are not talking and try to get them to open up. I find sometimes those are the most powerful moments.
My friends would describe me as: Hahahaha. I just emailed my friends as part of a career counselling questionnaire on me, so I have all their answers: warm, friendly compassionate, honest, hard working and committed.
If I could invent a super power, it would be: something to prevent Acquired Brain Injuries – even though it has enriched peoples’ lives it has also caused a lot of pain and suffering to a lot of people.
What inspires me about BIST is: Oh my god – family members. Their unbelievable love, devotion and commitment to their children. They’re all super moms and dads. They have such persistence and tenacity to help their kids. It’s just awe inspiring the way they can overcome obstacles and the incredible strength and courage they have to pick themselves up and keep moving! After every group meeting I leave inspired for sure!
If I won $1 million dollars I would:Oh gosh! I would produce whatever documentaries I wanted as the fundraising is always a challenge. I would use it to do my passion projects. I would also take time off to travel with my husband. We plan to go to Japan for our honeymoon and still haven’t had a chance to do that. (I got married a year ago)
My personal hero is: I’m working on a documentary now on a young Indigenous man from Nova Scotia. Last year he did a Pride parade on his small reserve with a population of under 4,000. He did it because a lot of LGBT Indigenous people had committed suicide and he wanted queer people to feel like they belonged. He is an amazing guy to talk to – to see his wisdom and compassion.
My “celebrity” crush: Lisa Vanderpump! She is on the Real Housewives of Beverly Hills and also has a spinoff show called Vanderpump Rules. I like watching her shows and the last time I was in West Hollywood, I went to her restaurant Sur and her bar called Pump. I think she’s funny, glamorous and she also does a lot of animal rights work. My guilty pleasure is watching her shows.
My favourite BIST event was: an art exhibit of survivor’s art. One of our group member’s mom had photographs of her son’s work, such sensitive works and was a really an amazing idea.
Kevin’s favourite BIST event is happening this week!
A quote/motto I try to live by is: I got from a meditation book I’m reading. It says, “When you’re going through a difficult time try to be as compassionate to yourself as possible. And even try to be compassionate to yourself about your inability to be compassionate to yourself”. (in other words, we all beat ourselves up sometimes and that’s okay too)
If I could volunteer anywhere in the world: I guess I would volunteer in a warm climate, doing something fun cuz I’ve just finished a documentary and have seen a lot of devastations, natural disasters. Maybe as a volunteer on an animal reserve or working with children. I looked at an organization called Right to Play: children who have suffered because of poverty and war and they help children do normal things, playing and helping at the same time.
One time, as a kid:I built a volcano. I used to do a lot of building, mechanical stuff, creative things growing up.
I am most proud of: the people in my life who have overcome tremendous obstacles whether it be my sister, the people I do the documentaries on like the young aboriginal man or the families I meet at BIST.
My favourite BIST moment from the past year is: At one of our family support groups we all went around the room and talked about whether this experience has made us better people or a worse people. We got some really emotional, powerful answers and we all agreed that in the end, even though we would never chose to go through this, we had all become better people.
I remember the last thing we did as a family. A week before everything happened we celebrated Eid Al-Fitr.
For those of you who are not aware, Eid is a Muslim festival that happens twice a year where we get together with family and friends, and share a big meal. Both Eids have distinct connotations. In particular, Eid Al-Fitr represents the celebration of 30-days of fasting known as the month of Ramadan. Eid is one of the happiest days of the year and to top it off, that Eid occurred on a hot summer day.
My family has nine children, and a total of 11 people, so traveling together is always challenging. That day, for the first time in a while, we all went out together. It was an amazing experience, one that we spoke of for days after.
I’ll never forget the way I felt when I first heard the news about my brother. I can vividly recall it as if it were yesterday. The same couple of moments and memories consistently flood my mind, and even though it has been over three years since it happened, I think about it every single day because it completely affected and changed all aspects of my life.
I can remember seeing him leave the house, and every time I closed my eyes I saw my brother’s face at the forefront of my mind. I can speak for everyone in my family when I say that my brother’s traumatic brain injury changed our lives because it affected every aspect of our daily living. Having said that, I always felt like it affected me the most.
Because of who I am as a person, and the role I play in my family dynamics, I spent every day at the hospital for two and a half years while my brother received care. I saw things I can never un-see. My time at the hospital changed every aspect of my life, and how I perceive the world.
With so many siblings in my family, naturally, some of us are closer than others. My brother and I were, and are, very close. We told each other everything, and we always trusted one another. All of that factored into how much it really impacted my life, emotions, and day-to day-thinking.
Imagine one day you woke up in a hospital bed not able to do many or most of things that you were once able to do. How would you feel? Now imagine knowing that what happened to you was the result of a violent assault. These thoughts never left my head and I would constantly put myself in his shoes and think, “How would I feel if this were me?”
The doctors said my brother had an extremely poor outlook, and a slim to none chance of a meaningful recovery. These were the exact words that were used. It seemed as though everyone was treating him like he would not have a future, I never took that to heart. I could not give up hope.
There was and is still not a lot known about the brain. During this time, nothing else mattered but making sure my brother was doing well and being looked after. I did not feel comfortable leaving him in the hands of strangers, especially considering they did not believe he would get better or have a ‘meaningful recovery’.
I went on the Internet every day and looked for more information on traumatic brain injury. I read stories that people have shared based on their experiences. At the time, I felt like I was the only one who believed and had hope my brother would get better. It was the hardest situation that I have ever faced in my life as every day was a constant battle in making sure that his voice was heard, and he received the best care possible.
As the eldest daughter of nine children, and the daughter of immigrant parents, I felt as though it was my responsibility to always look out for the family by using my voice and knowledge to help them make decisions.
Everyone always came to me for support and advice. Yet, in this situation I did not know what to do. It felt like life was moving 200km/hour, much faster than I can actually process what was going on.
I was just trying to get through each day not knowing what would happen the next second, minute, or hour. Comforting everybody else was my way of coping because it was one thing to see a sister or brother cry but to witness my parents falling apart only meant what was happening was actually real, and I needed something to hold on to. Positive thinking, and remaining optimistic was the only way I would have been able to get through it all without losing my mind.
I often felt like I was alone but I always remained optimistic. I wanted to give my brother every chance to come back to who he was, and if I did not believe that it could be possible, I felt like I was robbing him of his potential to successfully recover.
Consequently, I would spend 18 hours a day in the hospital, every single day for the past two and a half years that he was hospitalized. It never occurred to me how much time I spent being in a hospital.
I never once thought about myself as a I sought comfort from knowing what was going on in each step of his care. Without giving it any thought, I made the decision to never leave his side and put everything else in my life on hold. I felt guilty if I was doing something that made me happy but did not involve him. I couldn’t think about myself knowing my brother’s suffering.
At the time when this happened I was an undergraduate student. During my free time I used to volunteer at hospitals, engage in various extracurricular activities, and enjoy time with family. Since this happened I felt like I lost all motivation to continue living my “normal” life as nothing about it was normal anymore.
I put the word normal in quotation marks because it is a subjective term. It was extremely difficult to see someone I knew all my life suddenly go through all these struggles, challenges, and difficulties in everyday activities that as able-bodied humans we took for granted.
Furthermore, I found it particularly difficult to balance out what was important to me as I constantly thought of his well-being and would spend most of my hours at the hospital. My rationale for why I was happy to take on such a role was that I wanted everyone in my family to feel content, and not be overwhelmed with what was going on.
Most importantly, I did not want to see everyone miss out on life, friends, and the things that they use they use to do on a regular basis. It was easier for myself to take on this role and still be in high spirits with missing out on the daily things that I used to do, however, the rest of my siblings were just kids, and I did not want to rob them of their childhood. It seemed as though everyone was able to get back into their daily routines and still do what it was that was important to them such as school, and work but I just could not move past this part of my life.
As a caregiver, it is easy to forget about yourself as you are constantly caring for another individual day in and day out. I tended to bury my emotions and how I really felt from others. I never spoke to anyone about how I felt because I did not want to consciously think about it. Everything seemed surreal, and I could not come to terms or accept the situation.
Whenever I thought of the circumstances, I felt lost, out of place, and that nobody knew how I was feeling or what I was going through as most of the time I would be alone at the hospital. Nothing in life prepares you for this nor do I think there is a manual out there that explains how to feel, what to do, and to how to cope when situations like this happen. Even if information like that exists, I strongly believe that every situation is unique in its own respects and that there are many other variables to factor into the equation.
“So the hospital phase is over, isn’t that awesome, now you can finally get back to your normal life!” This is what most people said, and the reality is that after you leave the four walls of the hospital, another chapter of the rehabilitation journey begins. It is a whole new world when you have been away from your ‘normal’ one for such a long time, and many people are not aware, or understand what that means. What happens next? What is life going to look like in the next five years, or even two? Nothing is certain, and every day should just be taken as it comes. Recovery is a lifelong process, no matter what the gains.
Fast forward to over three years since it happened, and about 11 months after leaving the hospital, I can say my brother is doing very well and is much happier to be home. He looks very healthy, much like his old self. I am dealing with the challenges of returning to my old, previously ‘normal’ life, which doesn’t seem normal anymore.
Motivated to return to the life he once had, my brother never gives up. He works hard every day, challenges himself to new lengths, in therapy sessions with his occupational therapist, and physiotherapist, and in everyday tasks.
He once said, “What is it that I will do for the rest of my life? I want to do this, be this, and go here. There is nothing that I cannot do if I work hard. Yes, I had a TBI, but that does not define me, it is just a part of me. I’m still the same person, do not treat me any different.”
I am an avid believer of this quote from Indian author Ritu Ghatourey:
Everything happens for a reason. That reason causes change. Sometimes the change hurts. Sometimes the change is hard. But in the end its all for the best.
I want to take this moment to say that given how horrible and scary this situation was, I am deeply grateful for all that I have witnessed, and learned over the past three years. If it was not for this situation, I would not have known how little people know and understand about the nature of TBIs, the various stigmas and assumptions that society fosters, and how this shapes and influences the ability to successfully reintegrate back into the community, and work as rehabilitation is a lifelong process.
The lack of understanding and awareness in society is a major barrier to successful reintegration, and is a public health concern, considering that TBI will be one of the major leading causes of death and disability by the year 2020.
I made meaning of this situation by believing that for me what had happened was a turning point to help me realize where my passions lie, and what it is that I want to commit to for the rest of my life.
Before this happened, I learned about TBI in my studies but I never once imagined what it would look like first hand. I never understood what it meant to be able-bodied, and to be able to do day-to-day things that we normally do not think of and have taken for granted. Furthermore, I never realized how difficult it was for someone to get around if they were on a wheelchair, and this includes going to the grocery store, the park, or even the bank.
It is through this experience that I have found something that I am immensely passionate about, and it is improving and enhancing the lives of TBI survivors, and their caregivers.
Samira is an MSc Candidate at the University of Western Ontario, in the Health and Rehabilitation Sciences Program, specializing in Health Promotion. Her current research focuses on oral health in traumatic brain injury, where she is qualitatively exploring the lived experiences of health professional students in various rehabilitative programs such as occupational therapy, physiotherapy, speech-language pathology, and nursing.
My husband, Norm, has lived in a long term care home since acquiring his brain injury six years ago. Each holiday, be it Easter, St. Patrick’s Day, Halloween or Christmas, the facility decorates the common areas, in attempt to give residents and their families a more festive experience.
To be honest, since Norm’s accident, I really haven’t felt like celebrating the holidays. Norm and I don’t have kids so why bother? It seems as though I am just going through the motions.
Thankfully, Norm and I have good people around us. We get a crew together to decorate Norm’s room each year. His brother, sister-in-law and friends come to help. They help bring out the holiday spirit – which is hard, as Norm doesn’t show many emotions.
As much as possible, we try to keep things the same as before the accident. Christmas Eve we go to our parish church for mass. On Christmas Day we go to Norm’s brother’s to open presents and see the rest of the family. In the afternoon, Norm and I head over to our friends to wish them a Merry Christmas.
Despite this, our trips are more complicated now and planning is essential. When Norm and I go anywhere, I have to book the mobility van that is at his long term care facility. If the van is booked, I have to phone the taxi company. I have to strap Norm in with seat belts for safety. When we go out for Christmas dinner, to a restaurant or to friends, I have to make sure that Norm has a pureed meal to eat.
At the end of the day, I think having family and friends around is all Norms needs as when they are around, he just beams.
After her husband’s injury, Theresa went back to school to become a Personal Support Worker. She has taken courses in brain injury, and is now a full time caregiver. You can follow her on Instagram, HERE