Episode 50: He's not heavy. He's my son

Being a parent means giving unconditional love whether times are good or bad or whether your child is healthy or ill. I learned and lived that truth over the last year as my oldest son was diagnosed with AML (Acute Myeloid Leukemia) only a month or so, after he returned home from his freshman year of college.  I was a firm believer that kids learned from their parents and not the other way around, but boy was I wrong.  I had the opportunity to learn from my son during his 9 month-long battle with this deadly disease.  Here I am some 8 months later, and I still wrestle with my emotions. It grieves me most knowing I won’t ever again hear him say, “What’s up Pops?” 

I watched my son endure and fight until he could no longer. The disease ended his young life.  As he fought and suffered, I too had my own internal battles to fight in dealing with his disease. Not being physically able to take away his pain, I felt helpless – at times hopeless. When I was with him I did not want him to see me lose it. I had to be strong even though I wanted to cry for him.  I fought to be strong in front of him and in private I wrote to purge myself of the pain and anger I felt.

I am not the first or last person to lose a child, but what I went through (am going through) is indescribable. It is my hope that my words might serve to assist someone else or shed a light when the way gets dark. Maybe then,  I can begin to feel  that what Kwasi/I/we went through as a family would not be in vain. Through these letters, I’ve been able to express my emotions in a way that that allow me to begin a healing process. They are, for me- tears that water a new and fertile ground. One from which hope and understanding may flourish.

 Please allow me to share with you a couple of the journal entries I penned in the last weeks of my son’s life. May you find in it a seed, with which you can cultivate your own healing.

February 2011

(One night before he went home for the last time only to return again and never leave on his own)

I purposely enter the room at a very late hour and crack the door ever so slightly that I may pass through sideways; I do this in order to control the amount of light that enters into the room from the hallway.  As I close the door behind me, and darkness consumes the space, I begin thinking about light, considering its importance.  I take a seat and allow my eyes to adjust to my new surroundings. I peer over to the person in the bed taking in the overwhelming loudness of the dark. The apparent silence its seems is merely a facade. As I sit in the chair I think back to much happier times. I look at this person and the condition they are in and a myriad of emotions well up inside me and erupt suddenly, like an unstable volcano spewing its ash and lava. But instead of the lava, my eyes burn with tears that stream down my face like twin waterfalls, with the force to carve rock or greater, my attempted steadiness. I begin to appreciate the darkness for its ability to conceal my emotional out-pouring. I wish not to make sadder this place.  I pull the handkerchief from my pocket and press it against my mouth to suppress my sobs, abandoning the tears that wet my face.  I cannot believe I am looking at my 19-year-old son who has undergone his 3rd round of chemotherapy for cancer/AML (acute myeloid leukemia). I begin to think of all the things he has missed out on since his return home this past May from his freshman year at Hampton University. It is now time for the second semester of what would have been his sophomore year and just past his 20th birthday. How did it come to this and why?

I try to divert my stare and emotions by glancing at the television overhead, but my eyes are drawn back to my son’s now frail body.  He has lost an considerable amount of weight and the brightness of his eyes has subsided. His bright smile that was released from the confines of braces only 18 months ago, has now been replaced with a set of straight teeth masked by a continuous battle of phlegm and blood from mouth sores resulting from the chemo. His hair which he lost after the first round of Chemo, has grown back but much finer than before and is a shiny black coat of close cropped hair. His skin, once that of milk chocolate brown has darkened considerably due to the toxins in the chemo as they permeate his rapidly changing epidermal layer.  To make for a more dramatic scene his skin has taken on a look of someone with vitiligo as the newly regenerated skin of his normal complexion resurfaces leaving blotches of dead skin all over his body.  His fingernails and toe nails have become darker, an indication of the foreign substances he has been injected with intravenously.  I often go between the many different photos I have amassed over the years in my head to try to substitute the image I am now faced with to reassure myself that this is temporary.    To complicate the situation more he has had a tracheotomy procedure done. He is now being supplied the nutrients he needs via a tube inserted into his nose that leads to his stomach. As a result of the trach, verbal communication between us has also not been possible in over two weeks. The doctors hope to replace the trach with smaller one to allow him to speak and eat solid food soon. It would be great to hear him talk… the simple things mean so much!

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