I watched this beautiful short documentary about a teenager named Zach Sobiach who died from a rare form of cancer. He knew he was going to die, everyone knew he was going to die and he lived with this knowledge with such grace. He used his time, while he had it. He was loved and celebrated by his family and friends. I believe he was sick for a few years.
I watched this documentary and then I saw a trailer for a movie about teenagers living with cancer and how they lived with the knowledge of their impending death and yes, that was just fiction but feelings of guilt resurfaced as I watched these two films.
There was never time to get to some peaceful place of acceptance. Ron talked about writing his thoughts on various topics and many stories for the girls, but he didn’t get further than an outline. I think he/we all thought there would be time, enough time, more time and I think that sitting down and actually writing would be accepting that he was going to die—even though there was no other possibility— and that was too painful, too hard. When he became too sick to write, we talked about doing video. We did maybe 10 minutes of it but even that was hard to do. Although his mind was okay, the pain medicines took away some of his sharpest thinking and clarity and he knew it.
I could never say to the girls, until the very, very end, that Daddy was going to die. Even though it was terminal from the start, I thought that the odds were so slim that he even got cancer that why couldn’t he be one of the slim odds and, if not get better, at least live with it for a few years. His body was so strong. He was so healthy. He didn’t meet the characteristics of a typical pancreatic cancer patient. Why shouldn’t he be in the 5% (or fewer) of people for whom the treatment actually works? Yes, he was going to die but we didn’t know when.
I never lied. When we explained to the girls that we had to leave Jakarta we told them that Daddy was very sick and that the doctors were going to have to work with him for a long time. They thought maybe he could go back to the States and then return to us in Jakarta. We told them that it would be best if we were together and that we wanted to be with the rest of the family, too so we had to move back as a family. When had a procedure, I explained what the procedure was going to do—open up a bile duct, look inside Daddy’s body. When he took meds I never said that any of the medicines would fix or cure the cancer. I told them that this medicine called “chemo” was going to try to shrink the tumor or that pill was to make Daddy’s pain or nausea a little better. When he was on TPN I told them that Daddy’s body couldn’t tolerate much eating so we were giving him IV nutrition. Towards the end, Sophie realized and said to me, “Mommy you always say that the medicines are to make Daddy feel better but you never say that they will fix him”. I looked at her and slowly nodded. She cried. I know she was beginning to understand. I didn’t have the courage to tell her that he wasn’t going to get better. That certainly would have been an opportunity.
The girls were only 7 and 9 years old. I felt like I had to protect them. I couldn’t deal with the reality and I felt like it would be unfair to leave them with their Daddy’s death sentence hanging over their heads. The crises were coming at us hard and fast. There were so few moments of calm. I spent so much time just reacting to Ron’s needs and my own full out terror and grief. We tried to keep things stable for the girls. I know that I was doing the best that I could at the time. I do know that --yet I feel guilty. Could they have handled the news? Would they have spent time with him differently? He didn’t want them to change their schedules or miss time with their friends. We’d put them through so much in such a short time by pulling them out of school, moving overseas, putting them in a new culture, a new school, new language, etc. and then returning home in emergency circumstances. Ron badly needed a procedure and we were determined to have it done in the US. It took us three moves to get back into our house that was rented out to tenants. All this while being re-diagnosed/confirmed and trying to decide on doctors and treatment plans. And all that took place within the first 4-6 weeks after the first diagnosis.
They loved their Daddy and they know he loved them. We tried to give them stability amidst total chaos and I think we did that. Now when they cry and worry that they will forget their Daddy I question myself. I questioned myself at the time but I could not bring myself to say more than I did. Some families tell their kids upfront that the parent is going to die. We knew he was going to die and unless he got run over by a bus, the cause of his death, but not when –the oncologist gave us that line about the marathon, not a sprint and he would talk about next year. I focused on that and prayed to the universe that we could have a year, or maybe even more. I told Ron to focus on his 50th birthday. He didn’t make it to his 48th . I thought there would be more time, the right time to tell the girls. They were so little. I thought we’d have some weeks or months in home hospice where they would know that he was dying and be able to spend peaceful time with him. Maybe I am watching too much TV/movies. He was too sick, to in and out of the ER, in too much pain towards the end. There were so few plateaus, never improvements and the plateaus were only apparent when things got worse and things went downhill so quickly. We thought there would be periods of time when he got a little “better”. There were really only moments where he felt okay, not days and weeks. There were almost no days where he felt normal.
So I ask myself, did I do the right thing? I am trying to figure out a way to let go of the guilt or the worry that I could have done better for them. I don’t think I could have done any differently. I couldn’t make it better for Ron. I couldn’t’ make it better for the girls and I couldn’t make it better for myself. I could not fix this. Oh, how I wish I could have fixed this. All I could do was love them and show up for them. I hope it is/was enough.