When Is The Right Time?
I am doing my final edits of my book (yes, that is right! I finally finished it!) before I send it off to be published. I am at the part of the book where I discuss my heart surgery, and my concern for my daughters.
My daughters were not born yet when I went through my battle with Hodgkin’s Lymphoma thirty-five years ago. But they were there, when my world got turned upside down, as late developing side effects from my treatments revealed themselves in a rude way, requiring emergency open heart surgery. My daughters were aged five and three at the time. I was still adapting to the news myself, but I had two young girls who had no idea what I was about to go through, what I would be like after the surgery was done, or worse, if I did not survive.
My daughters by that age, did understand the concept of someone being sick or not feeling well. In fact, many children have toy medical kits to play doctor, a valuable opportunity for children to learn not to be afraid of doctors, nurses, and hospitals. My daughters were no strangers to me taking care of them when they were not feeling well. Of course, they liked the extra attention, but they also loved the comfort it gave them.
This medical experience that they have already had though, has been at their “age appropriate” level, how things got explained. When dealing with an issue, our children learn to trust us, that we will help the doctors make them feel better. Sometimes we end up being the bad guy, forcing them to submit to an occasional blood test or vaccine, or take some medicine. In the end, our children learn that all of us play an important part in the care.
When it came time, the first of many, that my daughters witnessed a major health issue with me, the concern was “how much do I tell them?” They knew about my cancer past, but did not know that it was my treatments that caused this. At their age at the time, that would have been too complicated for them to understand. But not being able to hide the enormous scar on my chest, not to mention having to prevent them from climbing all over me for the time being, would be too hard to cover up and pretend did not happen. Again, anything said to them, would have to be “age appropriate.”
Nothing was said to them prior to the surgery, but when my daughters were brought in to see me following the surgery, you could see the fear in their eyes, seeing me laid out in a hospital bed, connected to all kinds of machines and tubes coming out of me. As I was able to speak with the breathing tube no longer in me, I was able to assure them, “It’s okay. Daddy is fine now.” My older daughter was more curious about all the machines and bells and whistles. My younger daughter had been placed on the bed with me, as she snuggled up along side of me. Age appropriate. “Daddy’s heart was not working right, and the doctors fixed it. I will feel better real soon.” That was all they needed to hear. And it was the truth. Age appropriate.
Unfortunately, as they got older, I continued to develop additional health issues related to my cancer treatment history. But as long as I did not need surgery, it was not something I felt needed discussing with my daughters. What I did disagree with however, their mother chose to tell my daughters repeatedly that I was “fine,” “nothing wrong with” me. While in the moment, there were no pressing issues, there were plenty things wrong with my health, that were being watched, waiting for the time something would need to be done.
Then, on March 26th, 2012, at 3:00 am, I was rolled out of my house on an ambulance stretcher, as my daughters watched from the top of the stairs. I was dying from sepsis and pneumonia. I spent several days in the hospital recovering. I never did know what my daughters were told. I do know that they remember that night. I did not see them again until I came home from the hospital, when I had the chance to explain to them, now aged 9 and 7, that I was just very sick, but the doctors took care of me. Again, at that age, they were still too young to learn about my complicated health history. At the same time, there were still those around me, telling not only my daughters, telling others, there was nothing wrong with me.
Over the next many years, I would end up in the hospital several times. My daughters, though being told there was nothing wrong with me by others, saw that things did happen. But the results were always the same. I went to the hospital, and I got better. As they became teenagers, that allowed me to explain in a bit more detail, not explicit details, as events came up. And still, there were those willing to say otherwise.
My divorce would complicate communications quite a bit, as there would be attempts to use my health against me, which put me in the position of not letting my daughters know when something had happened. This was painful for me emotionally, but it also presented another issue, it reinforced to my daughters what others were saying falsely, that I was okay after all, nothing wrong with me. Age appropriate. I made sure that my daughters were not included in any discussions about the divorce, unless it was something that needed defending. But I never put them in the middle of it. In their late teens and now as adults, they are told 100% what is and has been happening with my body. It has been explained why these things happen and have happened. They also know, while I am being treated, I will never be 100% better again. My health issues will continue. They know what I am having done, when I am having it done, and told when it has been done.
My daughters need to know these things. They deserve to know what is happening, and the truth. Even before they were eighteen, they were capable of hearing some form of the truth. I have no idea if the other voices around them are continuing to spread the false statements that nothing is wrong with me, but I know my daughters know the truth. They need to know the truth. They deserve to know the truth.
This picture was taken after my most recent surgery, my 3rd heart surgery back in 2021. I was Facetiming with my daughters who knew I was having the procedure, and I promised them that I would let them know as soon as I was able to call them. My daughters were 18 and 16, and because of all the other untrue stories they were being told by others, I made sure they knew the truth, not to scare them, but because they had the right to know the truth. And they were more than capable of handling it.
My father had been lied to, as an adult, that his mother was just having a gall bladder attack. She soon died, not from her gall bladder, but from cancer. And it was because of that, and the memories of how she looked in the end, that kept my Dad from being there for me during my battle with Hodgkin’s Lymphoma, because he felt he could not handle being lied to again.
My grandmother lied to me twice. Once by omission by not telling me of her diagnosis of breast cancer, and the second, by having the doctors follow her orders, and hide the fact that she was terminal with a second cancer, ovarian. These situations created issues of guilt for me, because of things left unsaid, undone because time ran out. They were things that should have been done anyway, but had we known time was not long enough, we would have taken more time with her.
There is no turning back, no do-over when it comes to my Father and Grandmother. They are gone. But the thing I learned, was I would always be up front with my daughters and tell them the truth, not to scare them, but so that they could see, I was not afraid, and I was going to do all I could, to pull through as I always do. Should something happen to me, with a terminal ending, which I obviously would never see coming, would be devastating to my daughters if they did not have one final moment with me.
Again, I have no idea if my daughters are still being lied to by people who honestly have no idea about my health anymore after a decade. And that will be their cross to bare, having that mistrust with my daughters. But my daughters do understand my complicated health history. All that they expect of me, is to take care of myself, listen to my doctors and my caregivers, and we should see each other next time. That is the plan. If something comes up before then, they get told. It gets dealt with. And we continue on to our next visit with each other.
Which after all these years, despite my health, I have lived to see both of my daughters graduate high school, and next week, both will now be in college. My health never seems to play fair, giving me no warning when something is not right, but I do have a long list of other things I want to experience in my life, as long as the higher powers above will grant them to me.
Paul's Heart 