Coming to Terms With a Parent's Chronic Illness: A Child's Perspective

by Charles Mickles, Alyssa Mickles, and RJ Mickles

“I’m scared all the time because I don’t know what the future holds. We don’t know when we will start to lose you, and if you will forget us. Sometimes I just feel kind of numb.” I sat there, for the first time, really feeling the fear, pain, and sense of loss my children were experiencing. It had been two years since we heard those four little words, “You have Parkinson’s disease.” It was a diagnosis not just for me but for my entire family, and finally, I felt strong enough to ask my kids how they were really doing. It was a conversation that brought laughter and tears, but more importantly, helped me to realize for the first time that this path was “our journey,” not just mine, and just like me, they were dealing with and coming to terms with a lot.

Most people who get a diagnosis like this are older, and their children are not so young. My children from a very young age had to face this reality, and as a father, I not only have to walk through and deal with this myself, but I have a family to consider. Unfortunately, this was not the first time my children had to come to terms with their father’s struggle. Having battled rheumatoid arthritis from the age of 15, my children have never had a dad that did not have some physical struggle, and they have never known what it was like to have a dad who was not sick.

So, when this latest diagnosis came around, once again my children were faced with a new reality.

One that they should not have had to face for years to come.

One that their friends did not understand.

One that their life had not yet prepared them for.

One that would in many ways define the rest of their lives.

And one that even I could not fully comprehend.

Just like I had to come to terms with this new battle, my children also face a similar challenge. As a child, how do you deal with this? How do you face the future that seems so uncertain? This was the question that my children had to answer as they faced a new reality each and every day. As I talked with my children one night, I wanted to know how they were walking through this – how they were processing and dealing with the struggle and uncertainty of my health. Through this conversation, we laughed, cried, expressed anger, and just loved one another. I have no idea how long we were talking and reminiscing, but I will always remember it as one of the deepest and sweetest conversations I have ever had with my children. It was a conversation we needed, and one that forever changed how I viewed this path we were on.

What’s been hard for you as a daughter/son?

“Watching you go through this and there is nothing we can do. I’m scared all the time because I don’t know what the future holds. We don’t know when we will start to lose you, and if you will forget us. Sometimes I just feel kind of numb.”

You said you can’t do anything, but is that really the case?

“Well, we can do something. We can love you, but it does not seem like it is enough.”

What else has been hard?

“The unknown. We do not know what will happen to you and when things will happen. Sometimes the future looks dark, and it is hard to deal with.”

What has been your biggest disappointment?

“Not having anyone who understands that we can talk to because I am so young. Sometimes we worry that your life will be cut short, and we won’t be able to do everything we want or need to do with you.”

Have you missed out on things?

“Yes and no. I mean, I missed out on just being a kid, and not having to worry about your health. It is always on our minds, and we worry about how you are doing.”

How do you deal with it?

“Sometimes we get frustrated and upset, and we take it out on those we love. Sometimes, I ran away from problems. I dodged things and tried to avoid it. Many times, I internalized it (and sometimes still do). Lots of times, we just don’t talk about it, but when we do, we have a few around us who help us and take time to talk with us. One good thing is we have tried to make all the good and happy memories count – going to NASCAR races, doing Build a Bear (at the age of 19), and dancing with you (my dad) to BTS (yes, it is as funny as it sounds). We just try to make memories and make today count.”

How do you face tomorrow?

“Sometimes we don’t, and we just try not to think about it. Other times, our friends and people around us try to support and help us. Basically, we just take it one a day at a time.”

How has it made us better?

“We don’t take things we do for granted as much — like talking to you and getting advice. But each day, we deal with it together.”

What would you tell someone else?

“Treasure and hold on to the friends and family around you. Don’t bottle up your feelings – we both, in different ways, pushed our feelings away until we broke. We did not talk about it and just let it keep building up until we broke down. We sometimes avoided being around you, because it hurt to see how sick you were, and all it did was make our pain harder. Find someone to talk to about this and find others to help you deal with it.”

How has humor helped you?

“Sometimes, it helps me hide my pain. For a moment, it helps me feel I can get through it and it will be alright, even when it is hard. It reminds me of how you have always been.”

What have you learned?

“Life sometimes sucks, but we cannot focus on all the bad stuff. Sometimes, I don’t know how the hell my dad does it (I would be in a dark hole and would not get out of bed). Some days, seeing my dad go through this makes me think I can go through anything, and bad things can happen but good can still come out of it. Some days it is hard to see how this helps others, but I know our story has.”

By this point, we all had tears in our eyes and just spent a few moments hugging, thankful for the time we had spent sharing with one another. As a father, it ripped my heart out seeing the pain, doubt, fear, worry, and sorrow this journey was causing my children. As a father, there was also immense love and pride in seeing how strong my children truly were. As we finished talking and hugging, I poked them both in the side, tickling them. They jumped, we laughed, and I simply said, “I love you both, and I am so proud of you. You will never know the blessing you are to me, and how thankful I am to be your dad.”

For the first time, I really saw what my children were walking through, (and my wife, but that’s another story). It has changed how I am now walking this path, for now, I understand, I am not alone, because they (my wife and children) really are walking this same path with me because “I” do not have Parkinson’s disease, “We” have Parkinson’s disease, and together we will walk this path, no matter where it takes us.