By Abigail Rose-Burton
Friends often suggest I could write about grief, and I can, I suppose I am doing it right this second. But truly, most of the time the thought makes me freeze. I don’t even know what I am feeling and thinking; I don’t know where I am at in the grieving process.
How could I comment on what grief is like?
I attended 6 funerals of children the year Matthew passed away. The one thing that I was able to take away from that, apart from more heartbreak, is that everyone is wholly different.
My journey led me quickly back into the hospital, back to the ward and back into the company of the nurses and staff that had cared for Matthew until his passing. Another mama reached out to me and told me how desperately she missed us and missed them (the hospital staff), but she couldn’t for a second face the idea of being it that place, the place she had lost her little person.
One of my dear friends did go back. She bravely held herself together because she desperately wanted to support another of our friends. No matter what the cost to her. But it was a one-time thing.
On a Facebook post, one mum lamented that her special needs friends expected her to be as involved in their lives as she ever was, ignoring the triggers that their world would now be filled with.
So one thing I know and that I can continue to share over and over, is that the only experience I have is my own.
Every journey is unique and cannot be compared
Sometimes, a mutual friend asks what they can do for to help X and it makes me nervous to answer.
I wrote the 10 Ways to Connect with Your Friend after They Have Lost Their Child – in response to one of those requests.
I read articles by other parents and sometimes I think, ‘Yes, that’s so true, I felt every bit of that.’ But other times my little mind cannot comprehend what they are going through. It’s like we are different species.
I have cried so desperately hard at being able to see the pain a friend who has lost a child is in, but not being able to help, feeling like there is nothing I can do for them. No help I can suggest or recommend is going to change how they experience their grief.
I am learning that we have to let others going through this learn to trust that they’ll know when it’s time to act. They know we are here, they know the supports that are around them & when they are brave enough, they will know it’s time to reach out.
My Story Is My Own
I sought professional help early as my life experience drives me to fix things. I didn’t know if I was broken, but I sometimes felt like it, so I thought it couldn’t hurt to get a look under the hood.
For many though, they dare not lift the hood; not until they are strong enough to face the horrors they think they’ll find under there.
My journey says there is definitely pain there, but the pain I would have continued to carry with me every step of the journey is way worse than facing those things. For me, when the horrors are faced, brought out into the light, I believe many of them lose their power.
I choose to see grief this way too.
When I go into the hospital, whether the first time or the most recent time, there are many many things to remind me of Matthew, of his life and of our lives together.
It hurts to varying degrees. But ultimately they remind me of Matthew. The many facets of his life, the way our lives were intertwined. And, there isn’t a moment of his life that I want to lose. So the pain of the memories being triggered is okay with me.
Sometimes My Choices Cause Unexpected Pain
In the last few weeks, another dear little boy lost his fight with a rare genetic condition. He was just 3 years old and there were lots of things about him that reminded me of Matthew.
He died inside the same hospital. I would have known many of the staff who cared for him. His family moved to the same bereavement suite that my family used after Matthew left us.
The day before this little boy passed, I went down to the hospital to drop a healthy meal to his mum who was desperately craving some veggies. Due to COVID-19 I wore a mask. I fully concentrated on how I was going to make sure someone from reception made sure she got the meal.
Walking inside the doors, focused on my task, I half registered the queuing lanes making sure everyone was screened before entering the hospital. I headed to the empty one and was greeted:
“Hello Abi, how are you?”
My head spun a little as I tried to recognise the staff member in front of me, with mask and goggles on.
Matthew had two complex care trained support workers and this was one of them.
She greeted my son, Shane too, who also looked puzzled. I explained to him who it was, initially naming the wrong carer, and correcting myself.
I went through the motions, got cleared to speak to reception and had the meal taken care of.
We exited, waving to the carer again on our way out. When I got into the car, it hit me like a tonne of bricks; the last time I saw this carer, she was sitting by Matthew’s bedside reading him a story…the day he died.
It Helps To Not Feel Alone
It hurt so much, I cried on and off the rest of the day. I messaged a dear friend to tell her. She said she wanted to call but was on a video conference. I told her she didn’t need to, it just helped to know that someone knew the pain I was in.
I’m not crying on my own if someone out there is thinking of me. Understanding where I am at this moment.
As I write tears pour down my face.
Does it make me regret the action that brought me to this place? No, absolutely not.
Will I avoid reminiscing or telling my story in the future? Nope.
Will I choose carefully when I do so? Yes. I will protect my energy. I will understand when I have the time and space to process and recuperate from such moments.
Is this the same for all the other precious mamas?
I don’t know.
Each one of us is different. Sometimes it’s comforting enough to know you’re not alone and someone knows that you’re hurting.
Even if they don’t get it.
Abigail is the founder of Caring for Yourself as a Carer which she set up after her 5 year old son Matthew passed away from a rare and complex condition. Her goal is to empower special needs families to get out of survival mode, and take better care of the things that are stressing you, relationships, finances, and health. For more info visit: abigailrburton.com