When our daughter was alive, it was pretty natural for us to talk with our family, friends and co-workers about her. She was born with cerebral palsy, and it caused issues with her both physically and developmentally. She was perpetually 5 years old and, at nearly 25 years of age, loved Barney, the Wiggles and Disney princesses, especially Snow White. Her main mode of moving about was a power wheelchair, which she wasn’t exactly super adept at driving. Her speech was limited, and she had to use her high tone to help with simple tasks such as eating, brushing her teeth, using her computer and operating her chair.
Because of our situation, we shared stories about her often, such as how she would get mad and storm off to her room. However, for her such an endeavor could take up to a full 5 minutes of maneuvering her chair so she could close the door. But then she realized that she was stuck, because she had a harder time getting herself situated enough to reopen her door, so, with much humility, she’d ask for help. We talked about achievements she made despite her limitations. We offered stories about her sense of humor, and what she found great delight in. We talked about operations and procedures she needed and had to help correct problems with her eyes and her feet. And we also would share about the times she wasn’t behaving well. We were very proud of her, and loved every aspect of her personality, even the not so fun parts.
So, when she suddenly passed away from SUDEP (Sudden Unexpected Death in Epilepsy) in July of 2016, we didn’t stop talking about her. In fact, talking about her had become more important than ever, especially knowing that there would be no new stories to share.
At first, people responded kindly to our talking about her. They would smile, ask questions, and, if they didn’t know her, would offer how much they wish they had. And those who did know her would offer their own memories and stories, which would bring such needed comfort, even when tearful.
But after a bit of time passed, we noticed that we heard fewer and fewer stories about her. And when we’d mention her, the feeling in the room would become anxious and uncomfortable. Sometimes someone would change the topic of the conversation, or make an excuse to leave. Posts I’d make about her on social media would receive fewer and fewer responses. It was as if the world we lived in was telling us to “get over it, and move on.” To those of us left behind, that is the cruelest thing anyone can ask.
I have no idea why, in some cultures, we do not allow those who have lost loved ones to grieve properly. We were created to feel, to know great love, and to know great pain. Our sorrow is a natural part of grieving. And yet, we often expect others to “get over it” in whatever timetable we see fit. This is not normal. It is not fair. And it is not okay.
In some cultures, grieving publicly is expected, encouraged and supported. And remembering the dead is celebrated annually to give family time to remember loved ones who have transitioned.
Please lovingly let your family and friends know that you need to talk about your loved one. To mention the name. To talk about fond memories. To openly shed tears and share a broken heart. The only way one can heal properly is to grieve properly. And that takes time. So, let them know you’ll need time to process and grieve. It is up to you, not them.
And grieving isn’t linear. It is fluid, like waves. It ebbs and flows. Sometimes it is calm, sometimes stormy. Each day we do our best to put one foot in front of the other. But sometimes we take a few steps backwards, and sometimes no steps at all.
We know instinctively that keeping the memory of our loved one is essential in our journey through grief. We will talk about them. We will celebrate them. We will shed tears over them. And, over time, we will do so less frequently. But we will never “get over” them and “move on”. And it is not up to us to make those around us more comfortable about our journey. And that is okay.
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