I feel as adults we have all had something at some point in our life that has made us feel some sort of guilt. Whether it be the piece of candy you stole from the dollar store when you were 6, or the lack of time spent with a loved one only for it to end before you had the chance. Guilt is such a hard pill to swallow. Because once it hits, it can consume you and hold you hostage. It can creep on you when you least expect it. It is a dirty little devil.
A couple years ago, my life as a mother changed forever. My son was diagnosed with a rare cancer disorder that showed up after an appendix rupture. I can remember the doctor's face, the tears that followed those words and the look of fear on my oldest son's face. I don't think that kind of news ever really sits right. How could it? My entire knowledge of the word ‘cancer’ was horrifying. I have lost many good people in my life to cancer and everything I had ever known about it was just plain bad.
The real picture of my son’s diagnosis isn't black and white. It is still one of the most rare forms to have and the knowledge behind it as a whole is still in the process of lots of research. Especially since it is even more rare for a pediatric case. He will forever have it. He will continue to be tested his whole life to watch for growths and complications from it. When there are no growths to be found, he is for the most part healthy. You think I would be ecstatic at this fact. Which I am. But this is the point my friends where that fun little feeling of guilt creeps up.
There is a saying that “things could be worse.” And man could they be. My son could have a death door knocking condition, going through horrid treatments and spending his days in the hospital away from everything he knows. But he isn't. Aside from the routine testing and quarterly doctor visits, he gets to live his teenage life tormenting his siblings and testing every last parent button I have. As a mother, I am beyond grateful for where we are at with his cancer. He is currently healthy and has minimal complications. And when I start to overthink, I start to feel the guilt set in. What did I do to deserve the ladder of this experience? Why him, why me and why not all others?
I feel a good portion of guilt about this almost everyday. Maybe it is part of the grieving process. I am not sure. But all I know is the weight of the guilt some days can outweigh the fact that my son is ok. I have many friends that have lost their children to cancer or other illnesses. Young lives taken before they really were able to live a full life. That just sits heavy on my heart. How can I talk about my son being healthy when others weren't lucky? How can I sit back and be Ok with the fact if there was a good diagnosis, this is probably it. Am I happy about the diagnosis? Absolutely not. I wish everyday that it wasn't a thing. I wish life was like it was before the diagnosis. But it's not.
So why would I allow myself to have these guilty feelings? I shouldn’t. Every situation is different. Every diagnosis is different. Every person is different. I have spent so much of my time not allowing myself to be upset and bothered by my son's diagnosis because “it could be worse.” Just because it isn’t as critical in the moment as others have been, doesn't mean it is any less real or any less worthy of my true feelings.
I share this story because my hope is to enlighten others about a few of the emotions that come as a parent with a child that has a complex medical condition. What it's like to live in a not so perfect world. I want others to know that their feelings are valid and they aren't alone. But I mostly want them to know that it's ok to feel relieved at any sight of hope, even if it isn't fair to those around you or you don't think you deserve it.
Your emotions about your current situation do not need to diminish because others had a not so happy outcome. Your current situation is just as important as others even if it doesn't seem like it. It is time to let go of the guilt you feel because your situation is different or “better” from others.
Here are a few ways you can let go of that guilt.
Allow yourself to feel just how you need to heal or deal.
Allow it to be ok even if it feels like you have no right to feel that way.
Give yourself grace.
Stay out of your head.
Don't be afraid to talk about it.
Don’t be afraid to get help if you have trouble sorting through the emotions.
If you need additional support you can also always reach out to our Patient Advocate, Katelin, who would be happy to be a helping hand and to connect you to any help you might need to get through this.
Write something about yourself. No need to be fancy, just an overview.