Before our daughter passed, 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 intellectually. 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.
So, we would share our stories about her with our family, friends and colleagues. We talked about achievements she made in spite of her limitations. We offered stories about her sense of humor, and what she found much to delight in. We talked about operations and procedures she needed that helped 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.
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 share 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, sometimes the feeling in the room would become a bit uncomfortable. Sometimes someone would actually 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 publically is expected, encouraged and supported. And remembering the dead is celebrated annually to give family time to remember loved ones who have transitioned.
Grieving families like ours need to talk about our child. To mention the name. To talk about fond memories. To openly shed tears and share a broken heart. The only way we can heal properly is to grieve properly. And that takes time. We need time to process and grieve. Part of the process is talking about the child. And there is no set amount of time that will take. It is up to the individual.
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. So we will talk about them. We will celebrate them. We will shed tears over them. And, over time, we will do so less frequently, and with fewer tears. 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. We did not ask for this. We were never given lessons on outliving our children. This is a journey we had no choice in taking. So our concern is not whether others think we’ve grieved enough. Or too much. Or not enough. We must be authentic and honest in our grief. If that makes others uncomfortable, that is on them. Period.
So talk about your child. Cry about your child. Laugh about your child. Miss your child. Celebrate your child. And in the process, you will heal. One story at a time.