Andrew Levy childhood cancer


Guest post by Esther Levy

I am a survivor. Of a slow torture no one should have to bear. A loss that permeates my being each and every day. My son was taken from me by an insidious disease.  He did not survive.  Those who make it are exalted as ‘winners’, ‘warriors’, ‘disease-beaters’. . Does that make my son a ‘loser’?

I was left years ago to sit and rifle through the sharp frayed pieces of my life one by one, determining how to pick each one up to start anew.  The life that was destroyed.  The reality that left a hole in my heart that no series of stitches, no matter how durable, could possibly repair.  

Beaten down. Broken. The tear pockets from my eyes are permanently stretched, prepared to catch another deluge at a moment’s notice.  I’m weathered, like my faded blue misshapen sweater with the little wool beads on the sleeves, tiny fuzzy spheres accumulating through heavy wear. Yet I stand upright, appearing indestructible. The ripped up flag still waves, albeit brokenly, after a windstorm has yanked it to shreds. 

They tell me I’m resilient. “I wouldn’t be able to survive if I were you”. But people use the term resilient as an adjective, and the state of being resilient, ‘resilience,’ as a noun. As if you’re a hero just because you’re there, because you’re still alive.  Why am I resilient? If you still exist after the death of your child do you deserve a medal because you did not get consumed by the inferno of pain?  A rubber band is resilient. It  ‘bounces back’, returning to its original size after being stretched and pulled.  A bereaved mother does not bounce back.  Her band has snapped, stretched far beyond the fracturing point.  She is irretrievably broken, a different being than what was before. Still existing in the new form, unrecognizable to her very being. A mama bear, fierce and steadfast forever searching for her lost cub. It is daily work to simply be. Because the natural order of the world is no longer. 

“Maybe you can’t bounce back, but you, like this list of people before you (cue the list. . .)  can bounce forward! ” I’m told.  Like all those ‘supersurvivors’ who have changed the world as a result of their struggles.  That can be you!  Make the world better than you left it, and then your suffering will not be in vain. While well intended, all these words do is leave me drenched in guilt for what I could be.  Somehow telling me that I can be ‘better’ than before? By creating a nonprofit or finding the cure with the survival fumes I have been left. Will it make you feel better knowing that something good came out of the nonsensical horror of a 3 year old child dying before his mother? With these words, you are discounting the intense level of energy it requires to survive. While there are ways I know I can contribute to the world through my new, unique lens on life, why can’t I just be?

I challenge you to change the perspective- what if the most heroic action is simply surviving? Making it through each day and finding moments to smile and be grateful for what is left? What if the most valiant thing is simply continuing to stand, not allowing yourself to spend every minute engulfed in the what ifs? Acknowledging what is lost but simply moving through life and taking it day by day? 

For me, resilience should be a verb. Resilience is an action- A person is only resilient after a tragedy because it took everything they had, ALL their active energy, not to crumble. 

To the caretakers, the friends, the family- Be gentle, be gracious. Let the survivors live without the pressure of being ‘supersurvivors’ or ‘bouncing forward.’ Give them strength to parent their living and deceased children, rest when they need to, and contribute to the world in ways that they can. Sit in the pain with the bereaved mother, and hold her hand while she cries, today, tomorrow and ten years from now. Acknowledge that not everything happens for a reason, and good does not need to come out of bad things.  And be proud of her for taking one step in front of the other.  Because simply living after the death of a child is the hardest work you can imagine.

About the author:
Esther Levy is a mom of four children between the ages of 6 and 14 years old – three on earth and one who resides in her heart. In 2014 her life turned upside down when her third child Andrew was diagnosed with AMKL (Leukemia) at the age of 14 months. She left her career in pediatric nutrition and as a wellness coach to be by Andrew’s side and to care for her family. She is passionate about her family, fitness, and nutrition. Esther and her husband helped start a music therapy program for hospitalized children at Lucile Packard Children’s Hospital Stanford, and she is in the process of writing a book. She recently launched an online community entitled, “The Lost Sibling Project” to help empower bereaved siblings to process their grief. She earned a bachelor of arts degree in Human Biology from Stanford and a MSc with distinction in Public Health and Nutrition from the University of Westminster in London. She currently lives with her family in Maui.


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