a wooden toy train on a track

When my husband’s tumor was first discovered, our children were only ages 9, 7, and 5. They were really too young to be kept in the loop about what was happening, and we went out of our way to hide it all. They were too young to hear about doctors, illness, tests, and an unknown prognosis. We spent two years not knowing anything, so it would have been impossible to explain to them what we didn’t understand. Once we started getting answers, the reality of what could be coming wasn’t something we felt they needed to know or worry about. We wanted them to just be children, with no adult worries, and we wanted to keep their lives as “normal” as possible. It worked for a while.

Now, our children are ages 16, 14 and 12. There really is no more hiding, and it wouldn’t be fair to be less than honest with them.  They know Dad is sick. They see it every day. We don’t make a point of talking about his illness, but we answer honestly now, when they have questions. That is a hard transition to make. As parents, we want to protect our kids from the difficult parts of life. Nobody wants their kids to grow up with a sick parent, constant financial struggle, and an inability to know what can be expected in the future. Under the best of circumstances, none of us can predict what the future will hold. But with an illness, it’s even harder. Life is lived on a day to day basis. Plans are hard to make. Promises are almost impossible.

For a long time, I felt guilty that our kids were dealt this hand…living in a family with a chronic illness that hangs over us every single day. I felt it was unfair to my husband, and myself, but especially to our children. I had an amazing, happy, care free childhood, and it hurt my heart to know that my kids wouldn’t have the same experience. I’ve always wondered how this experience would affect the rest of their lives. Would they grow up feeling cheated, or insecure, depressed, or anxiety ridden?

As our kids grow older, I find myself looking at our situation in a different way. I’ve accepted that this is how things are and there is nothing we can do about it. We can fight it and wish it were different. That doesn’t work…I’ve tried it. We can let it consume us and ruin our lives. For me, that has never been an option and I wouldn’t allow my kids to let it affect them that way either. Now, I try to look at it another way…a way that will hopefully help my kids. My kids are, and always have been, watching me and how I respond to my husband, his illness, and our life as a family. I hope that they have learned that spouses are loyal, through sickness and health. I hope they have seen that life can be brutally hard and not go as planned, but that you simply don’t give up.  I hope they have learned that sometimes, you just have to put your head down and plow through the tough times, and that eventually you WILL come out the other side.

Now that our kids are more aware of what is happening, they are asking me more questions, and talking to me about their feelings…whether positive or negative. It’s my opportunity to continue to teach. The most common feeling they have mentioned is frustration. They get frustrated that their Dad sleeps a lot, and spends a lot of time just sitting and watching TV, or wandering aimlessly around the house, not doing much of anything. They get frustrated when they see that he eats and drinks unhealthy food. They get frustrated that he is often too tired to do something with them, or drive them somewhere. They get frustrated when he won’t wear a seatbelt. I completely understand their frustration, but I take those conversations as the opportunity to sympathize with them and to teach them that we can only control ourselves, not other people. My kids tell me they don’t like to talk about it (as they are talking about it), and it gives me the chance to tell them that talking about it relieves them of the burden of holding it in. I encourage them to talk about their anger and frustration because I know it helps to let go of it and share it with someone else. I tell them it will eat them up to hold it in if they are sad, angry, or upset about something. They tell me they want to spend more time with their Dad, but don’t know what to do with him. I tell them to tell him that they want to spend time with him…it will make him feel good, and they will always remember the times they spent together. Communication is important, and they should always tell him when they want to be with him.

As life evolves, and the years go by in our household, there will always be teachable moments that I hope will help my kids throughout their lives. I could live with a heavy heart, wishing that life for my kids was different. Or, I can share my experience with them in the hopes that they can move forward through their lives with a little bit of wisdom, and a foundation for dealing with the hard blows life can throw at them.

Written by Renee Palumbo
Renee Palumbo is living life with a chronically ill husband, three children, a dog, and a cat. In the 10 years since her husband’s diagnosis, Renee has learned that life can change in an instant, and we all have choices in the way we handle a crisis. She holds a degree in journalism and sociology from the University of Massachusetts at Amherst. Renee writes a blog called Running on Empty, which is about seeing the humor in life, dealing with the stress of a family member’s illness, and looking at life from a slightly warped perspective. She hopes that by expressing her thoughts and feelings, she can help another caregiver feel less alone and more understood. Read more of her thoughts at runningonemptyblog.net.

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1 Comment

  1. Renee,
    This was bveutiful, thank you! My husband’s been since for awhile now and with a 5 year old I can relate. What’s the healthy balance of not leaving my kid in the dark but also honoring and supporting them to just be a kid. It pulls at my heartstrings realizing and sensing that my husband won’t be there for his high school graduation and all the important life events that follow, girlfriends, driving his first car, and god knows what else. I stay strong and here fo him. It’s a difficult tightrope you walk. Sending you strength.

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