Recently, Johannah and I had the privilege of speaking at a Day of Remembrance event at Duke, for families that have recently lost a child. I wanted to share our speech:
Leiann:
My son, James, was diagnosed with a brain tumor at 11 months old. At that time, we were told that if you had to have a brain tumor, this was the best kind to have, and for over 10 years it seemed like that was true. James needed to be treated for the tumor most of his life, but he did well with the treatments and seemed to be defying odds. Although in my head I knew that James could die from this tumor (because that’s what people had told us), in my heart I didn’t believe it. He was doing so well…...so well that most people had no idea anything was even wrong.
In the summer of 2010, however, that all changed. The tumor changed, started to become aggressive, and in less than 6 months James was laying in the PICU at Duke in a coma, unable to wake up. It was hard for me to admit that James wasn’t going to make it. My mind just kept saying, “This can’t be!!! This wasn’t supposed to happen. It was a low grade, benign tumor”. We had always talked about James’ life and his many years of treatment as a journey, yet on November 21, 2010 I started a completely different journey, the journey of grief. I wish I could tell you, “Here’s the key!”, but I have no key. What I do want to tell you is that I’m okay. I haven’t arrived, I’m not done, and I certainly haven’t “moved on”.....but I’m okay.
Everyone grieves differently. Because of that, there really is not a “normal” way to grieve, or a particular way its supposed to look, or even an acceptable time that it’s supposed to last. For some, its a spiritual journey, that’s how it was for me. For others, its not. Some cry a lot, others don’t cry at all. Some seem to move on quickly, others seem to not move on at all. Yet family and friends, most of them meaning well, want to tell us how to grieve, what it should look like, and when it should be over.
One of the things that helped me get to this “okay” place was something my friend, Tom Zuba said. Tom and his wife had their first child, Erin, a beautiful baby girl and when she was 18 months old, they had to take her to the ER because of a fever. They were sent home and told that it was just a virus, but by Wednesday she had died. His world was shattered. In time, they went on to have two more children, boys, Rory and Sean. Then one day, 8 years after Erin’s death, Tom’s wife suddenly died from clots in her lungs. And then 6 years later, his oldest son, Rory, was diagnosed with a brain tumor, and 3 months after that he too died. I don’t know what I would have done with that much loss, but I can tell you what Tom did. Today, Tom is a public speaker on “a new way to do grief.”
Tom was asked once how he gets up every morning. He shared that part of the reason he was able to get up each day was because he had learned, after Rory’s death, that “I get to decide what I believe.” I get to decide what I believe about my child’s death. I get to decide what I believe about grief. I get to decide what grief looks like to me and how long it should last. I get to write my story!!!
For me, I didn’t cry a lot while James was here at Duke and we knew that he would die. I didn’t cry much in the week between his death and his funeral. I didn’t cry AT his funeral, except maybe a quick tear once or twice. I’m sure I didn’t look like the “normal” grieving parent, but what people didn’t see (except for my kids) was the weeks following the funeral. It was during that time that I couldn’t STOP crying…...for weeks, or more…..and even then it was only because I needed to go to work. Once I got back in my car after work, the tears would start again. I remember walking into my son’s office one day, sitting down, and telling him, “I can’t stop!! I don't know if I’ll ever be able to stop. I think I’m going crazy.” I was already feeling the pressure that too much time had passed for the grieving process and it should have been looking differently. But I learned from Tom that this was okay. If I needed to cry for months after James’ death, it was okay. And if someone else never cried, that’s okay too. I get to decide what my grief looks like…...and so do you!!!
I recently read something written by Kay Warren. Kay’s 27 year old son had committed suicide. She wrote, “As the one-year anniversary of Matthew's death approaches, I have been shocked by some subtle and not-so-subtle comments indicating that perhaps I should be ready to "move on." The soft, compassionate cocoon that has enveloped us for the last 11 1/2 months had lulled me into believing others would be patient with us on our grief journey, but life never stopped for them like it had for us - their world didn’t grind to a horrific halt on the day of my son’s death. In fact, their lives have kept moving on with work, kids, plans, dreams, etc. LIFE GOES ON. And some of them were ready for us to go on too. They wanted the old Kay back. They secretly wondered when things will get back to normal for me – when I’ll be myself again, when the tragedy of that day would cease to be the grid that I pass everything across. I want to tell them – the old Kay is gone. She’s never coming back. I will never be the same again. There is a new “normal,” but that day has permanently marked me. It will remain the grid I pass everything across for an indeterminate amount of time….maybe forever.”
Johannah:
Losing James was extremely hard on me because, as I’m sure it is for many siblings, I had lost my best friend. When I went back to school, I did my best not to cry when I saw or heard something that reminded me of him, but there was SO much that reminded me of him. So the way that I best coped was by talking about him. At first my friends didn’t mind, but after awhile they didn’t seem to want to hear about him anymore. Some friends told me that talking about my brother that had died was morbid. But telling his stories was how I survived. Talking about him was how I kept James alive and with me. So if that’s what helps you, don’t be afraid to talk about them.
Leiann:
You get to decide what you believe. You get to decide what your grief looks like. Whether it fits the “norm” or takes a new path, its okay! You get to write your own story….because in grief, the heart makes its own rules.
Thank you
