In the end those were not the cards we were dealt. We were told there were no treatment options and that he would die.

RESILIENCE

 

The line that hooked me on the show “This Is Us”, comes following the stillborn death of one of Jack and Rebecca’s triplets. Dr K the obstetrician is transparent, and shares his own experience of personal loss when his own infant died years before. He provides words of wisdom to Jack on how to go forward.  He speaks the simple words, “I hope that years from now you can offer hope to someone by sharing your story. When you get the sourest lemon life has to offer go forward and make something that resembles lemonade”. This cliche in its simplicity speaks volumes on resilience.

 

In my professional life as a family therapist, I recently found myself in a training workshop on the topic of families of children with special needs. I found myself reflecting on my own life. As therapists we were asked to choose a word that reflected who we were personally. The word resilient resonated deeply with me.

 

Straight out of college

I went to graduate school for social work and earned my MSW. Fast forward several years as my husband had finished his medical residency and life was looking pretty promising. But then out of nowhere, our first child at 19 months old was shockingly diagnosed with a brain tumor in his brainstem. As young parents our world felt like it was spiraling out of control. Our goal became to give our son Tory a childhood in the fullest sense of the word. However, when Tory was 4 years old he had a recurrence of his brain tumor while I was 9 months pregnant with our second son Jordan. 

 

As if this was not more than enough, Jordan at 2 months old was diagnosed with the rare genetic disorder called spinal muscular atrophy. We had no family history. There was no treatment at the time and Jordan would ultimately die at 6 3/4 months old. It is an understatement to say we were traumatized and that our foundation of our sense of selves was shattered. 

 

I clearly remember the conversation between my husband and I on the fateful day as we drove to meet the neurologist who would diagnose Jordan. In our conversation we were bargaining, for the hope of receiving a diagnosis that Jordan and we could live with. Things like, if he can walk with braces, or be in a wheelchair but use his arms were within the realm of our negotiations. 

 

In the end those were not the cards we were dealt. We were told there were no treatment options and that he would die. We were asked if we wanted to have our infant institutionalized to be cared for through the remainder of his life. We knew this was not an option that we would choose. And so we brought Jordan home and we cared for him until he died. Side by side, Tory was then undergoing experimental chemotherapy for his brain tumor.

 

 

In that moment of diagnosis,

it felt like the world I knew was collapsing. I remember thinking that I had to make a choice to go forward. I had an awareness that if I didn’t do this it would also symbolize the loss of my own life. I remember thinking pick yourself up by the bootstraps and keep putting one foot in front of another. Truthfully, those were words that I had no clue how I would put in to action. Perhaps that moment symbolized one in a series of moments of the start of resiliency. I also intrinsically knew the choice I could make was to be Jordan’s mother for the limited time he would be  physically present as my child in life. That would be the gift that I could choose within the storm. When life hands you the darkest moments it is important to try and identify rays of light where they may exist. In the true sense I would begin going forward one day at a time.

 

In the darkest moments we still knew that we wanted a family and so we chose adoption as a way to honor that aspect of our lives and in hindsight it was also an act of resilience. We adopted our daughter Jessi at birth. She was truly a blessing and a gift. Years later we went on to have another biological son Brett through the advances of genetic testing. 

 

Today, we are married 35 years.

Long term marriage requires resilience because like life, marriage has twists and turns at the core of the journey. It doesn’t just happen. 

Our son Tory is 34 years old, healthy since the age of 8 1/2 and a long term brain tumor survivor who lives life based on his own terms in spite of challenges and reflecting his resilience. Our daughter Jessi is 27 and a social worker in the adoption field working with newborns and securing their care in the first weeks of life until they are permanently placed with their parents. This is an example of her  resilience. Brett, our youngest will be graduating college this year. As he grows he will continue to integrate all that came before him, what his family story means to him. He too will create his journey and that will include resilience and who he will be in the world.

 

Spending many years sharing our story publicly and supporting other families of children with brain tumors through my non profit work with the Children’s Brain Tumor Foundation CBTF.org and Jenna’s Rainbow Foundation jennasrainbow.org, are examples of ways that I discovered my own personal and professional resilience. Sometimes, helping others helps us to heal ourselves. This ultimately led me to redefine my professional roots and create personal meaning in the face of so much trauma. 

 

All of these years later, I took risks to go beyond the non profit world of brain tumors and expand my professional training to become a couples and family therapist. I am currently thriving in my private psychotherapy practice in Englewood, NJ. The foundation of my sense of self and safety in the world following personal trauma is constantly evolving and being developed and rebuilt. These are examples of my personal resilience and the resilience of my family.

 

My life is deeply enriched by those I have met along the way. That includes the extraordinarily dedicated health care professionals and families in the brain tumor community. In my psychotherapy practice I am always in awe of the remarkable range of complex challenges people face. I feel privileged to be included with trust in the intimacy of their journeys. Their perseverance and the grit it requires to face life through all sorts of adversity are strengths. In my work, I always hope to create a safe space where people can tell their stories as I am doing here, and to help them navigate as they explore, discover, and build  their own resilience.

 


Linda Wachtel is a licensed clinical social worker who can be reached on her website.

Linda Wachtel

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