This is a topic that has haunted me since I heard in 2017 that not only did I have breast cancer, but that I’m incurable. Having a terminal illness puts many things into perspective; however, the diagnosis does not come with a road map. Rather like parenting … I remember that horrible feeling of astonishment and being overwhelmed when we were permitted to take our newborn baby home from the hospital, knowing nothing!
That feeling of free falling without a parachute or plan has become a bit familiar to my husband and I when it comes to parenting. We’ve learned to trust our guts, to do research and talk to whomever will talk to us, but then we’ve gotten good at making a decision that seems best for our family and not looking back. This is a function of how we both do life and it has worked well for us.
So, when we were faced with a terminal diagnosis and the quandary of what to tell and to whom, we have pretty much applied our tried and true method. At first, we were extremely reticent and didn’t say much to anyone and we’ve worked our way into what works for us. We’re still refining that process, but here’s a few things we’ve learned along the way about talking to the boys …
- Be Honest. We haven’t hidden from the boys that I’m sick. We’ve had to talk to them about being gentle and not running away from me since I can’t move very quickly. The boys know something is going on and we didn’t want to hide things from them. Certainly we haven’t told them everything, but they know enough to know that if I’m having a bad day and I can’t be active with them, it’s not their fault.
- Be Genuine. The boys are aware that I have limitations and I explain them as best I can to them. After I had leg surgery, I was in a wheelchair, then I used a walker and then a cane. I couldn’t climb stairs for a while either. My eldest still talks about how the doctors needed to “fix my run” so that I could play with him. He understands my limitations in terms of how that affects him, absolutely developmentally normal.
- Embrace Fun. When I knew that I was going to lose my hair, I’d read that it would be best to shave the hair off when my scalp started hurting. Since all the little hairs were also incredibly annoying as they fell out and got everywhere, it was a relief to get rid of it. We told the boys that I was going to shave my head and they participated in the exercise. Both my husband and my dad also shaved their heads. Since it was hot and my wigs were itchy, I simply went bald. The boys had a great time rubbing my head and then my stubble as the hair grew back.
- Be Open. Every time I go into the hospital and can’t come home for a few days, I know it worries the boys. They are too young to talk about their fears, so we try to name what we can think of and speak to them. We particularly like the “feeling buddies” from Conscious Discipline and would encourage anyone wanting to talk to their children about feelings to check it out.
The boys are so young right now that it is hard to imagine having more in depth conversations with them. We will keep going at this the best way we know how, by researching, being present with the boys, and continuing to explore how best to support them through this amazing life together as a family, even with the storm cloud of a terminal illness hanging over our heads.