Joyful Sorrow

A Mother’s Grief

Christina & Daniel

Our family was stunned and inconsolable when Christina and Daniel were diagnosed with terminal cancer two months apart in late 2011.

Christina and Daniel, siblings born 5 years apart.

I still remember the night Christina was diagnosed. The news was difficult to grasp, let alone process. I was numb. She needed to stay at the hospital for further testing and to receive treatment. Her husband stayed with her. He never left her side.

We left the hospital because their dogs needed to be picked up and walked. We brought their dogs home with us and I walked down the sidewalk that night with thoughts and questions shouting in my head. How did this happen? What caused it? Why Christina? My sweet precious daughter.

We didn’t know how many different types of brain tumors there were until that night when I sat in front of my laptop researching primary brain tumors. They told us hers was large.

The formal diagnosis came the following day. She had a Glioblastoma Multiforme, the most aggressive type of brain tumor. At the time, we learned the median survival rate was 6-18 months with this diagnosis. She lived 20 months.

Changes in Personality

The necessary surgery and effects of the tumor affected her personality and her ability to connect with us verbally. She could talk, but there seemed to be a disconnect in comprehension for her. This lasted at least two months. I had lost my daughter even though she sat in front of me.

And then one day, she was back.

When taking her to an appointment one day, I mentioned how I missed our walks (we used to hike together once a week). She looked at me and said, “Why aren’t we hiking?” I was elated to see her connecting again.

We went on a few short ‘hikes’ after that, but it was extremely challenging for her. She tired easily and often. We took it slow and I savored every moment with her. We talked a lot. The connection I thought was lost was restored during this time. On our walks I was often amazed by the butterflies and birds that would often swooped in to say hello to her. They clearly knew how much she admired them.

The Question that Stunned Me

During one of Christina’s follow-up appointments at the teaching medical center where she was being treated, a student came into the exam room to interview her and asked lots of questions. One question in particular got my attention. Did she ever smell or taste anything before a seizure? This is common for some people with brain tumors we learned. Christina said no.

At that moment, my heart stopped. Daniel recently had shared a strange sensation he’d been experiencing for a few months. An odd smell would come out of nowhere every so often. He explained that the smell occurred first and then he would have a feeling disconnectedness where he would just stop and stare for a brief moment or two. I never witnessed it until much later on, but when he told me about it, I strongly urged him to see a doctor. He was 24 years old at the time and didn’t have a great sense of urgency about it. He felt fine otherwise.

After Christina’s appointment, I went home and when I saw Daniel there, I insisted he see the doctor right away. His insurance coverage was through his employer and he’d never used it, so it took a little while to get the appointment set. When he finally saw the doctor, she was quick to order a CT scan. Christina was her patient as well, and she was concerned.

I was at work when Daniel called to tell me he had a brain tumor, too. Tears swept over me, and I left the office as quickly as possible to get home to see him. Daniel met me in the driveway, gave me a big hug and said, “I’m sorry, Mom.” He was more concerned about me than himself.

We learned the brief periods of disconnectedness Daniel was experiencing were seizures: absence. Who knew there were different types of seizures?

Our Lives Changed in an Instant

These past several years have weighed heavy on my heart. So much worry, fear and uncertainty. Bi-monthly MRIs and follow-up visits, second opinions, treatment appointments, additional surgeries, emergency room visits, 911 calls… these were always present.

And now in 2019, the uncertainty has been cleared. Daniel did very well for a long time, but he passed away in June of this year.

They are both gone from this world.

My heart is broken.

Our Connection to the Afterlife

The day the decision for hospice was made with Daniel, he was very weak, falling while walking if not supported, disoriented at times and in severe pain. I spoke to Christina that night, and I hoped she could hear me wherever she was. I asked her to come get her brother because it was difficult for me to see him that way. I didn’t want to see him suffer. I believe she came for him. It was 3 days later that he passed. I think that surprised even the hospice nurse.

These two, Christina and Daniel, both very courageous as they faced death. Neither complained. In their own unique ways, they expressed acceptance and peace in dying, not fear.

Joyful Sorrow

Now my heart grieves doubly. I’ve come to accept I will always grieve until my final breath. And yet, I have the best memories of them. They were playful and loving. I’m blessed to have these beautiful memories to hold in my heart alongside the grief. I call it joyful sorrow.

Though their lives ended to soon, I will always cherish the time I had with them. They are great treasures in my life. I still remember their sweet faces when they entered this world, and how I held them close like precious jewels until they could walk on their own. And I had the honor of being with them when they took their last breath and left this world. My heart ached and trembled, but I stayed because I had to. I’m grateful.

This is a piece of my story, a story I consider sacred (almost too sacred to share). But I decided to share it here where others who have lost children might find some solace in my experience.

I want to offer you a place to share a piece of your story. May we be a support to each other.


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