If you’re a bereaved parent you know what a distinctive group we are and although we came to this place kicking and screaming, we are here. In each other we know that we are not alone and can rely on those that have lived the same experience to understand the trials and tribulations of every day life. But because we are such a distinct group, it can be very hard to receive support from those around us who, despite all the care and love they provide, do not quite get what it’s like to be behind a pane of glass while the world goes on around you. Of course, we do not wish that we had more members to empathize, to lean on, to nod their head in deep understanding but we do sometimes want those caregivers around us to understand some of the things that mean so much.
If you are a caregiver reading this please read on and take heart, we love you for all that you do but would like you to be aware of the following:
We Want to Talk About Our Passed Child
In the beginning we may not want to talk over the details but we want someone else to say their name. Don’t ever think that not bringing them up is better because it might upset us. Guess what, we’re already upset and our child is on our mind every single moment. We may get teary eyed and we may not be able to be part of the active conversation but just knowing that someone else is thinking of them too is a comfort. Don’t be afraid of tears. Through our first few years after losing Shawn to a brain tumour, I always felt closer to being myself again after a good teary-eyed heart to heart.
Birthdays and Anniversaries Are Important so Acknowledge Them – Always
One of the worst fears a bereaved parent has is that their passed child will be forgotten. That everyone will move on with their daily lives celebrating their own children’s accomplishments, birthdays, and school successes all the while forgetting that a bereaved parent wants their child remembered and celebrated as well whether it be for their beautiful smile, sense of humour or caring nature. It has been six years since we lost Shawn yet our neighbours acknowledge the day of his passing with a small token – flowers or a card – every single year. To know that other people are thinking of him on these days when we feel his loss a little more deeply means so much to us and the lack of acknowledgement from friends and family members who have moved on with their daily lives is deeply felt. Take a moment out of your daily lives and do that small thing that says ‘we remember them too’. You can’t even imagine how much it means.
Our Passed Child is Still Part of Our Family
“How many children do you have?” A very simple question but to a parent who’s lost a child it’s very difficult to answer. In the first few years after Shawn’s death, when asked this question, I would want to share Shawn’s story and let them know that even though he has passed, I still feel him with me every day. After all, until you knew about our family’s journey, you couldn’t truly know me at all. But I also didn’t want that uncomfortable frown and tilt of the head that strangers would give me when I explained. So I trained myself to answer “I have a daughter, Jayme”. Not a lie but not the whole truth either. Sometimes I didn’t want to be Sue, the bereaved mom, I just wanted to be Sue. Including Shawn sometimes met with disasterous circumstances when the other person was unable to get passed it and not including him sat like a brick in my stomach. This, of course, has become much easier through the years as I am less desperate for each and every person to understand this defining event that caused such a fork in our road. I can now choose between a passing acquaintance who doesn’t really need to know or decide to share how Shawn’s journey made us into who we are today with someone who will become a bigger part of our family’s life.
We are Never Over It
I remember a few years back a friend of mine called for advice about a relative who had lost their child and seemed to be not getting through it as quickly as those around her felt she should. I was shocked to learn that it had only been 6 months and the family was concerned that the mother was still wallowing in grief. The loss of a child is the most profound grief imagineable and has no time limit. Everyone grieves differently of course, but I at least found this to be true: the first year is a fog of forcing smiles and pushing yourself out of bed. The second year tends to be worse as you realize that everyone around you has moved on with their lives and you have been without your child for over 12 months. Finally in year three I felt that I could breathe again and allowed small peices of happiness to seep in. Here we are in year six and I still think of Shawn every single day but now he is my courage and inspiration to live my life to it’s fullest in his memory.
If there is one thing that you can take away from this article as a caregiver, it’s this: a bereaved parent will never, ever, ever get over the loss of their child. But this doesn’t mean that they will always be grieving. The loss of their child changed the very person they are and this will always be true.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Meagan’s Walk; benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.