Guilt
As my husband and I are watching our son Layton grow we celebrate every milestone. Most parents do, of course. But sometimes I find myself with huge lumps in my throat and feel that if I speak sobbing will ensue. Layton’s little 2 year old body once riddled with Leukemia cells, not only in his marrow but also in his Cerebral Spinal Fluid, seemed so weak…so sick. We didn’t know if we would ever see him celebrate his 3rd birthday, or put a back pack on and go to his first day of kindergarten, or ever see hair back on his little bald head.
And yet, nearly 7 years later, my husband and I are watching our son grow healthy and strong, play baseball hard and run to his heart’s content. I watch him slide across home plate, after stealing the bases as a runner in the game. I love how he slides when he doesn’t even need to, then he always turns around to find me in the stands and smiles big, almost taunting me, the “laundry queen”, as if he is saying, “Look how dirty I am, Mommy!” I chuckle, and secretly I am wondering, “Do I have enough stain treatment spray to get all of THAT out?!” But, all the while, I think, how blessed we are to live a “normal” life with Layton.
Normal…is that a relative term? Because what is normal? Is it even possible to feel normal after what Layton survived and what our family watched him endure?
Yearly now, we return to St. Jude in Memphis for check ups. He is now at the point that they consider him cured, without relapses, which means he no longer has to go through a bone marrow aspirate and lumbar puncture. We just do blood work, Echo/EKG for cardiac check ups, and an exam with his Hem/Onc doctor in the clinic. Well this year, I realized, normal is not really something we ever will be. And I am glad for it in some ways. I feel like God is shaping our family and especially our little man for special plans. However, I am also sad sometimes for Layton.
You see, this year, we were in the clinic on a particularly more crowded day than usual waiting for our turn. Layton was interacting with a few younger patients and playing games with them. It was really quite sweet. However I noticed there was a young girl with beautiful long blond hair, in a wheel chair covered in blankets. She seemed groggy and also had an emesis basin in her lap. Her parents hovering over her…her mother tearful because she couldn’t get her daughter to eat the food she had in front of her. In my mind, I thought that the young girl is likely a newly diagnosed patient…still with her pretty long locks on her head. I watched how she would almost fall asleep and then cry out in pain and began to gag as if she was going to vomit.
I wasn’t the only one who had noticed this young girl. At this point, the other little patients Layton had been
playing with were already gone from the waiting room, having been called back for their appointments. Layton was watching this girl intently. Not saying anything…just watching. I went over and sat by him. And pulled him onto my lap. Soon it was our turn to go back to see the doctor.
Layton had a stellar check up and the doctor enjoyed talking with him. “He’s so grown up now,” he said. And we all reminisced and talked about how very sick he was when he first arrived in Memphis years ago. Layton occasionally asking questions, and then interjecting snippets of memories of things that he thought were funny from his time over the years with his St. Jude care team.
As we left the clinic, my husband, oldest son, and mother walked on ahead. Layton and I walked a little slower. He suddenly was quiet again. I said, “I am so happy that you had another great check up, Layton.” Then he said, “I feel bad, Mommy.” I said, “Why, baby? Do you feel sick?” He said, “No. I just feel bad.” I paused and slowed to a stop and turned to look down at him. He said, “I feel bad that I am all better and still alive and these kids are still sick.”
SQUEEZE….WRENCHING…TWISTING…big lump in my throat. I was speechless. How was it that my 8 year old was feeling guilty?! I didn’t know that he would feel this way. How long had he felt this way? How long had he struggled with this emotional torment? Survivor’s Guilt is real…even for kids.
What could I do to help him? Because I too have felt this way. My husband and I have often said, “How is it that we have been blessed with the child who survived his battle, even as other beautiful children that we grew to know and love lost theirs?” It is NOT fair. I don’t understand it. As a Christian mother, I know I am not meant to understand this struggle, only trust. However, I need to know what we can do to channel these guilt feelings to help us move forward…to heal the emotional wounds left behind after surviving cancer.
- Amanda Burrow's son, Layton McKinleigh Burrow, was diagnosed at age 2 with Acute Myeloid Leukemia. This is a recounting the days just before and following his diagnosis. Because of her journey with Layton, she and her husband felt led to go back to school once he was well. They both graduated with Baccalaureate degrees in Nursing in December 2012. Amanda is a two time blog contributor to our project.
