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I Seem to Have Lost Myself Along the Way

Written by: Adriana Lewin

April 8, 2021

Hand holding compass for direction

We experienced the worst winter storm of my lifetime in Dallas in February 2021. The subzero weather we experienced was one of the coldest days on record for this area. The houses in the area lost power, had frozen pipes to several areas in their home, and all around the North Texas region, people experienced busted pipes and catastrophic losses — both of living people and basic necessities.

Now that the infrastructure seems to be restored and our basic necessities are out of danger, we look to the areas outside of our home.

Trees, bushes, and plants were destroyed, and over a month later, we all anxiously await to see what plants survived. We watch closely to see which plants will begin to show the slightest signs of life as the weather warms up, and which plants did not withstand subzero weather and will need to be removed. It is a period of hope and restoration, and one of hope that even though things look dead and damaged, that the branches will show signs of tiny leaf buds growing — proof of life.

As I have gotten outside, walking with the kids a little more to enjoy the warmer weather, I pay close attention to what nature is doing. And I am amazed by the sheer force of nature and how it can be so unexpectedly frigid as to damage many of the plants in this area and wreak havoc on the infrastructure essential to our survival, and causing catastrophic losses of all types. It has had this tremendous impact on me as I have contemplated how this cancer experience from the last year of my life reminds me of this winter storm.

We never EVER expected this season in our life — cancer—that would damage so much. With cancer, it was more than just the impact from cancer alone. It was all the areas directly and indirectly in our life that were impacted that go unnoticed by others outside the cancer world. My life felt like internally everything was failing— the infrastructure of my life was taking a beating in all areas as well as areas of my life I wasn’t aware of. Now th;at the immediate cancer storm is over, and the infrastructure is in repair, several months later, I realized that there are “plants” in my “garden” that have died and some that I am closely watching for signs of life — like friendships, spirituality, wisdom, hope, etc.

It’s been almost 6 months since my child finished his cancer treatment. Next week, we have his second set of post treatment scans —an MRI and X-ray —to make sure he is still in remission. I keep myself so busy to keep the nerves from overwhelming me like they have every other time we do these scans

For those of you unfamiliar with the word Scanxiety, it is the term used to describe how “scans” produce “anxiety.” Not just the evening before, or the day of, or in the days waiting for a phone call from the oncologist to give you results, but for some, the weeks leading up to the next scan.

I really like a post by my friend, Stacy, saying that scanxiety is not fear of the unknown, but it’s a reminder of what did happen and what could happen again.

It has been seventeen months since we started this “cancer journey,” and the worst scanxiety I experienced was the time leading up to the End of Treatment scans. I was nervous about the final scans— those would determine a very pivotal moment in my son’s treatment. Would we transition to “Off Treatment” and begin healing or would we be faced with living in “survival mode” even longer.

But now that it’s been six months since the end of treatment, I have found myself feeling lost these last six months. Lost, again, like I was when I heard the words “Your child has cancer.” Lost in the sense that my sense of identity has had to shift again, because somehow it feels so intertwined with my lived experience as a parent faced with a critically ill child whose life was on the line.

So who am I?

I am a stay at home mom. I am a mother to a child with cancer. I am a mother to a warrior. I am a mother to a survivor.

Notice how none of these “I am...” have anything to do with ME?

I seem to have lost the midst of this storm. In the past, before cancer, I would say “I am a full time Stay at Home Mom and a part time therapist.” As you can see, it is still not quite the “who I am” that I want others to gather from me. Those don’t describe who I am.

I have spent the last few months trying to understand who I am now after this experience. How has this experience shaped me yet not defined me. How have I changed — in my faith, in my ability to cope, and how I perceive the world and relate to those in it. It’s been a period of trying to find meaning to the suffering. Do not get that confused with the notion that my suffering has meaning. There is a subtle difference:

Finding meaning to the suffering: I CHOOSE what this suffering means and how it will be assimilated into my story. I CHOOSE how I move forward WITH the memories, the physical and emotional scars, and if I want to let it stay in the past as just part of my story or if I CHOOSE to make it fuel for a new passion or mission of my choosing — such as writing a book, creating a non-profit, advocacy — but in the end, choosing to use it as a way to help others faced with the same prolonged traumatic exposure.

The notion that my suffering has meaning seems like a super being (God) has intended for harm to come my way as a catalyst to strong arm me into doing something with the harm that theoretically He inflected upon me and my family. Frankly, that makes God sound like a little sadistic, manipulative and cruel Super Being who brings harm for the sake of some “unknown Good.”

I still haven’t wrapped my head around the why my friends lost a child to cancer and what “Good” is supposed to come from that. For what purpose? And if I hear someone tell me, I “might not know why NOW”....then I think we put God into a box and lose sight of free will and choice, and fall into the idea of the details in our whole life already being planned out for us. Unfortunately, this experience has turned people against God at times. Did they fulfill their life purpose through this experience? No. I believe that God weeps with us. That He suffers when He sees us suffer. And that things don’t happen for a reason, but we can choose to do with our suffering as we please— leave it, let it simmer, or use it as fuel for something that creates purpose and healing by removing the sense of powerlessness.

Having been through this experience has made my understanding of life, death, and everything in between shift and grow. But I know there is yet still so much to learn from this and how it will impact me and my family for years to come.

Don't make your whole life about cancer.

I once had a mother tell me that she wasn’t one of those moms whose "whole world was about cancer.” And I have always pondered on this.

Am I one of those moms who would choose to make my whole life about cancer? And I keep thinking, where is the fine line of advocacy, obsession and/or avoidance? Of survival guilt and paying it forward? Even if we choose not to let our whole life be about cancer, cancer has changed our whole life.

During treatment, our whole life inadvertently revolved around clinic appointments, unexpected hospital visits, specialists of all kinds, chemo treatment, inpatient hospital stays, radiation and imaging/testing/scans. I lost sight of anything other than being the caregiver and calendar keeper that I had to become. I had very little time for me. At one point post radiation, I had to do eye treatment for my child every ten minutes. I literally had a timer and I would stop everything to get in those eye drops to help heal his eye. “I”was the least of my concerns, and I did everything I could to make sure I kept up with the demands that cancer placed on me.

So now that treatment is over, I find myself rebalancing EVERYTHING. How could you not? If we were on a boat, and the heaviest thing—cancer — was removed from one side, naturally, they way we counterbalanced now has to be shifted around again to make sure we don’t tip over. And finding what areas of my life need to be shifted is a process.

And now that I have had less demands of my focus and my time from cancer, I am trying to figure out who I am more deeply than what I do and I am trying to figure out who I want to be moving forward.

I am a mother to a warrior, and childhood cancer has molded me but it has not DEFINED me. I have been exploring who I am now after the experience because I am forever changed. But at the end of the day, I am just a person, who loves being a mother and a wife, and loves to help people through their suffering. Not because I think I can take your suffering away, but because I know that joy and suffering coexist and trauma growth happens.

Yes, I find myself feeling a little bit lost at the moment, but I know that there is tremendous growth happening inside. I am paying attention to all the details in my life and watching what happens to the infrastructure within and what areas in the garden of my soul did not survive the brutality of the cancer storm and which ones need a little more time to show signs of life before I prematurely remove them. I just wait and watch as the seeds germinate and a garden of beauty emerges, despite the trauma we endured. It just needs a little time, care and tenderness to bloom once again -- and in turn, I will find my way to new normal and where I will go from here.

#Childhoodcancer #pediatriccancer #ptsd #traumagrowth

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