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.
You’re giving good advice and providing a great example that will help your kids throughout their lives. Perhaps they could suggest Dad organize an hour a week as “game night” for he and the kids, while Mom takes a relaxing bath or enjoys a good book!? Dominoes, Pinochle, Hearts, Old Maid, etc. Let the kids decide. Set a timer for an hour, and whomever is leading when the timer goes off, wins. Maybe they have video games that Dad can try and learn? Perhaps they could rotate whose week it was for game night with Dad, and once a month, they all or you all could play?
Good luck to your kids, your husband, and you!
It is tough not being able to protect your children from the reality of chronic illness! It is also very hard to watch your children and not be able to do the things you want to, because You are the one that is sick. For a long time I felt guilty, but now seeing the type of men, my boys have become, I am kind of thankful. They are caring, compassionate people who don’t give up! They have learned to enjoy and make the most of a good moment, and to be flexibile when the bad rolls around.
Renee, you are able to put into words what many care givers only wish they could. You are a remarkable mom!
Dear P Family, I am in awe of the strength of you all as a family, individuals, mother, father, children and weather you all like to think about it…..amazing caregivers to an amazing man. You will all have good and bad memories to hold on to. But they are your own. And I know as a family these times will be remembered with love by you all!!! Especially his insane/infectious sense of humor that has spread to all of you!!! I envy you all for the love and support you give each other every day! And Renee….you most of all are the super glue that has held all of you together with love and shear force of will. Love you all!!!!
Lisa, thank you for expressing all of this so perfectly!
You are an incredibly strong, wise and amazing mother, wife and friend!! Your family is so blessed to have you. I am in awe of how beautifully and gracefully you have handled D’s sickness from the very beginning. Prayers continue for all of you daily!! I miss you guys. Hello to all!
Lindsay, ❤ Thank you for your wonderful words. I, too, am in awe of her…Renee does make me proud! Love you