Being the Father My Children Needed as a Man With Chronic Illness

At the age of 15 when you hear that you have arthritis, nothing quite prepares you for the journey you are about to take. You try to live as “normal” a life as possible, but as the medical condition progresses, normalcy becomes more and more difficult. In constant pain, with every day a struggle, you wonder if you will have the life you dream of. Then one day you are blessed with a wonderful partner, someone who chooses to spend her life with you regardless of the challenges and difficulties.

This was the story of my life. I was blessed with a wonderful woman to walk with me as a partner and companion on this journey. Four years after our marriage, we were blessed with our first child. Every parent has doubts, but mine were amplified because of the physical struggles I faced. How would I rise to the challenge of being a parent? How would I do all the things my children needed? Would I have the strength, and would I be around to see them grow? Would I be what they needed?

As the years passed, my children had to face the struggle of a dad whose health was failing. In many ways, I could not be the dad their friends had. They were facing a struggle and battle that most of their friends were not. Many times, “surrogate” dads would step in and do activities I could not. Each time, it was like a gut punch as I watched my son or daughter go do something with another adult that I could not do. I remember my son one day begging me to do “Kite Day” with him in kindergarten, but instead, my brother-in-law had to go.

Don’t get me wrong, I was thankful someone could go with him, but it hurt because it was not me. I longed for those moments with my children, and sometimes struggled with the fact that I could not do all the things I and they wanted me to do. I knew this experience was not unique to me, but that did not make it any easier. In some ways, I felt like I was cheating my children. I wondered, would they resent me? Would they understand, or would they feel they had missed out on some things?

There were days like this, days when my children wanted me to run and play with them and it was all I could do to stand up. So many days when I would have to look at them and say, “I just can’t do it sweetheart; maybe tomorrow we can try.” As they would walk away I could see the disappointment on their faces, but there was nothing I could do, and my heart broke for their loss.

My kids would always say, “It’s OK Dad, we understand,” but the hurt visible in their eyes mirrored the pain I was feeling as a father who could not be what he wanted to be for them.

But what I didn’t realize in all of those moments was, I was exactly the father my children needed. Even with all my physical struggles, even with all the challenges I face, and even through the disappointments, they were becoming who they would be and many times it was because of the relationship we had, not the things we did. Too often I focused on what I could not do, and in the process, I missed everything I was doing. I saw the disappointment, but many times missed the things going on in their hearts that were making them the young man and the young woman they would one day be.

In many ways, these challenges made us appreciate the things we could do, and it made those times even sweeter. In some ways, it helped to show us what was truly important, and in many ways, it brought our family closer together. Don’t get me wrong, it was hard, and there was definitely sadness and disappointment along the way, but there was also an inner resolve and strength that was being developed, and these experiences were shaping them in ways I could not see at the time.

As dads, and especially dads with chronic illness, we sometimes put this unrealistic pressure on ourselves that we never should. We have this idea of what a dad should be, and then in our frustration or in our pursuit of trying to be that person, we forget to be the dad that we can be. As dads battling chronic illness, we need to give ourselves grace and remember that through our struggle we are speaking volumes to our children, and we’re helping to make them who they will be. The fight they see us battling each day can be framed by us, and give them hope that no matter what they face in life, they can make it.

As I sit here writing this article, I look at a note my daughter left on the computer reminding me of how much she loves me, and I realize in spite of my challenges of arthritis, Parkinson’s, and so many other things, my struggle has helped to make both my children who they would be. Our struggle has the ability to show them hope and strength, and teach them that no matter what life throws at you, you can face it if you choose to face it together, and with hope.

I am by no means a perfect dad, and I’ve made more than my share of mistakes along the way, but one thing I’ve discovered on this journey with my children is that while I may not have been the dad I thought I needed to be, I hope I was the dad that my kids needed me to be. If I have done that, then no matter the challenge, I have been the father I should have been.