I remember this one particular evening during treatment. I went to the Ronald McDonald Room, a large room on the 3rd floor of Primary Children’s Hospital where food is donated by organizations and restaurants for parents of sick children. Hayes had gone to bed and dinner was being served. I made my way down there so that I could have something besides cafeteria food. You walk into this place and no one is smiling…it is SO depressing. But I was desperate for some non-hospital food so I got my dinner plate and made my way to a long table with 3 other parents sullenly sitting in silence.
I can’t stand awkwardness so I immediately acknowledged the three people by asking each of them about their sick children. The first two were both RSV parents. Their children were on oxygen and the parents looked like they hadn’t slept in days. They looked scared and I felt for them. Then the third person said her son had cancer. I immediately gravitated to her for obvious reasons. We were both the parents of cancer warriors and I saw her eyes light up in recognition as well when I said my son had cancer too. She told me that her son was battling leukemia. Feeling immediately connected I told her that my son had a brain tumor.
I kid you not, she backed away from me. Leaned back and said, “Oh, that is bad. I couldn’t do a brain tumor! The treatments are so much more intense! So glad my son has leukemia.” It was one of the most isolating experiences of my life. I wasn’t even fitting in with other cancer parents anymore. It killed me. I felt incredibly alone.
Take that one step farther and imagine what happens when you lose a child. You are avoided even by some other brain tumor parents, as if you are the worst karma one can face! It is really hard. So I am now a part of the dreaded child loss group and frankly, I have to speak up because Hayes’ story deserves to be told. I sound like a broken record, but really, my story isn’t going to make anyone else’s situation worse. It is scary to imagine the “what ifs” but if you live your life scared of the what if’s, you lose out on memories with the ones you love!
I was reading a blog post by a fellow cancer mom the other day. She is in the throes of her daughters leukemia treatment right now. She was explaining in frustration that she doesn’t ever want people to tell her their “failure” stories. In fact, she said it was rude of people to try to relate with her if they had lost their child. She only wants to hear about success stories where the child is now 30 years old with cancer clear in the rear view mirror. I read this and honestly, my heart dropped. It literally brought me to tears.
To be honest, I get it. Part of me didn’t want to hear anything but the positive during Hayes’ cancer journey either. I worried that if I even acknowledged that bad things have happened that it could possibly happen to us. So I avoided it at all costs, pretending that no kids ever die from this disease.
But now that I have experienced it first hand, it breaks my heart for any mom that has lost a child. Whether through cancer or anything at all for that matter. Having a child with cancer is extremely isolating but losing a child is absolute plague status to the world. No one wants anything to do with your story because it makes them uncomfortable. So you feel this need to keep your mouth shut and not let the awkwardness out into the world.
Here is the thing, scary and bad things happen in the world, but incredibly beautiful things happen also. Hayes is one of those beautiful things! Even though he is an angel, the fact that he was here at all and that he is my angel is a beautiful thing! I will continue to say his name. And now, every time I meet someone that has their own experience with child loss, I will ask them their child’s story. I will ask them to tell me their child’s name! Their children are still beautiful too. No matter the outcomes of our fights, all of our voices are worth listening too!