Theo’s Story: After the Storm

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Karla Helbert

Early in September 2005, I flipped on the radio as I drove yet again the three mile route between home and hospital where our three-month-old son lay, intubated, in and out of consciousness, head stapled shut. Distractedly, as I did most things not involving my presence at our son’s bedside, I listened as NPR reported yet more devastating news of Hurricane Katrina ravaging New Orleans and her people.

Pain and sadness welled in my heart, my thoughts turning toward the hundreds, maybe thousands of homeless, missing, injured, dead, and returning quickly to my child, my personal horror overwhelming any empathy I could hold for the people of Louisiana. Blinking through tears, I wondered how I would feel about this if Theo weren’t lying in the hospital right now? How awful would I feel if this had not just happened to us? I found I did not have the capacity to hold my own terror, grief and sadness as well as the pain of thousands of strangers.

Theo in hospital.
Theo in hospital.

A hurricane of immense proportions had just made landfall into our lives as well.

Two weeks earlier, on Saturday August 20, 2005, my beautiful three-month-old son Theo, our first born child, began seizing and projectile vomiting. Ice cold dread snaked its way up my spine as I watched him struggle, one eye open, the other closed, one hand grasping, the other limp. Something was wrong with his brain.

After countless traumatic hours in two different hospitals, he was diagnosed with a brain tumor, a choroid plexus carcinoma, one of the rarest and deadliest of pediatric brain tumors. One in 275 million children annually will be diagnosed with a choroid plexus carcinoma. The survival rate even as long as 5 years is “dismal.” No child makes it to adulthood. As one of our oncology team members put it when she delivered the news, “It’s like winning the lottery, except backward.”

Diagnosis day ten years ago was one of the most traumatic days of my life. What came after was hard, excruciating, painful, heart-wrenching, all of those things—but far less trauma-filled. When the storm for which you are wholly unprepared makes first landfall and all your levees break, it takes a feat of preternatural strength just to stay above water.

For a few years, because it was important to me, August 20 was a day of observance. We returned to the PICU bearing gifts of donuts, fruit, chocolates, goodie bags for nurses we loved dearly and who took such good care of our baby. Then came the year when I just did not want to go. I didn’t want to stand in that hall one more time.

Still, I observed the day. I took time to reflect, to cry, to consciously re-live particular moments forever frozen in my memory that if not given attention, I knew, would come far more often unbidden, stirring up debris, making my grief-suffused life even more difficult to manage.

Then came a year when the day quietly passed without remark or observation. Last year, I realized the 20th had come and gone without my noticing until the following day. I was surprised, but felt okay about it. At nine years, I was somewhat acclimated to the ebb and flow of grief. I had become more adept at accepting how it came and went. I did my best to be with it when it showed up; I tried to be gentle with myself when I felt I somehow wasn’t doing it right.  Sobbing in the kitchen last Christmas I shocked myself by saying to my husband, “What is wrong with me? I shouldn’t still be feeling this way!” Really? I should’ve known better than that. I do know better than that.

Theo, one week prior to diagnosis.
Theo, one week prior to diagnosis.

This year, mid-August, I began feeling weepy, emotional. I was deeply missing my child, more consciously, it seemed, than usual. Writing the date at the top of a note, 8/20/2015—it hit me. My body knew this anniversary was coming before my mind recognized the fact of the date. This year, it needed my full attention.

I took time with the day. I sat and read many things I wrote a decade ago in 2005. When my child was still alive, when he was still dying. For a good couple of hours I sat and cried, missing him, longing for him. I cried for what my child endured, for what I endured, for what my husband endured. For what we are missing. Always.

I heard today, again on NPR, another story on this tenth anniversary of Katrina. Interviewees spoke of division in the hearts of some citizens of New Orleans. Some want to celebrate, while many others feel celebration is not warranted, that the date of devastation is nothing to celebrate, to even acknowledge. The destruction was so great, the losses so immense. There is still grief at the loss of life, the trauma, the struggles, the pain they have endured and will continue to endure.

The city will never be the same. Yet they are still there, the city is still standing. Looking back reminds us of where we’ve been, what we have come through, how we have changed, and what has not. Recognition and remembrance are important, even necessary, and possibly, at times, unavoidable. Perhaps the significance of the passing of a decade has some particular resonance in our psyches.

Another metaphor describes grief as waves. As we learn to float, the waves eventually come with less force and violence. It isn’t really about the passage of time; it’s about the continued practice of being with the pain in a thousand different ways. It’s not healing; it’s learning to grow with the grief, the changes, as part of who we are now.

The pain becomes less searing, this is true. And while I don’t like to say that it gets better, with greater space between waves, with more room to breathe and float, it is different. It is in many ways better than the gasping and fighting and struggling and crashing that early days and years hold.

This grief never ceases to amaze me. And since my love for my child also never ceases to amaze me, I suppose I should not be surprised that those things are commensurate. I have this anniversary been sitting with my grief, a familiar companion now, allowing it to be.

Theo, Mom, and Dad
Theo, while on hospice care, Mom, and Dad.  Photo credited to Patricia Lyons.

Ten years ago my life was irrevocably changed. It will never be the same nor will it ever be okay that this happened. Yet I no longer struggle. My love for my child is the strongest force on Earth. My grief exists because of my love for him. I let it come in whatever form it wishes to take. It is still not easy.

Someplace along my personal time space continuum, a Category 5 storm is still making landfall into my heart, tearing apart the very foundation of who I once thought I was, what I thought my life would be. For now though, now, in this moment, my levees hold.

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Karla Helbert is a bereaved mother, psychotherapist, yogini, reiki practitioner, aromatherapist, crystal collector, and award winning author. She has a private psychotherapy practice in Richmond, VA where she lives with her husband Jamie, their daughter Lula and the betta fish Captain Starr. She is a MISS Foundation chapter facilitator and certified Compassionate Bereavement Care provider. Karla’s newest book Yoga for Grief and Loss is available October 21, 2015 from Singing Dragon Books.

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