What’s for dinner?
It’s one of my least favorite questions. I have to think about what we’ve had recently, what everyone likes/dislikes, and make a decision. Every single day. It never fails. At some point today, I will get a call, or a text that says, “What’s for dinner?”
I’m not a big fan of making decisions, mostly because change inevitably follows whatever decision is made. Good change, bad change, scary change, unknown change… it’s something I’m not very comfortable with. Even if things aren’t good, if they stay the same, at least I know what to expect.
Since Bastian’s diagnosis, I have had to make a lot of really tough decisions. Decisions about which chemo drugs to give him, weighing out pros and cons of the side effects vs the “hope” of disease improvement. Decisions about whether or not to continue on with a drug trial, despite how sick it’s making him, because we’ve slowed the cancer growth. Decisions about not letting him go away to his youth group retreat last year, for fear of him being that far away while he wasn’t feeling very good. Most recently, it was the decision to take him off of the chemo he’s been taking for the past year, because he’s having some bleeding and kidney issues. I had to decide on whether to continue to poison him, with horrible side effects that could cause permanent damage, or stop the meds and not be doing anything to stop the spread of his cancer.
That’s a far cry from, “What’s for dinner?”
We’ve known for a long time that the treatments we are doing now are to maximize his quality of life. Our goal for the past year and a half has been to keep things at bay for as long as possible, on drug studies that have the least amount of side effects. As of right now, there isn’t another study for him to start. Even bigger decisions are coming up very soon, and I am not looking forward to being the one to make them.
What about hope?
People ask me if I’ve just given up, if I’ve lost all hope. That’s a tough question to answer, mostly because my beliefs are different than most other people. When most people speak of hope, they make reference to God, and miracles. Of course I hope that we find that “miracle”, that the docs will look at the scans and say, “It’s gone!”, but I have to remain grounded in reality so that I have the ability to face the things that are already here. The hope I have is that my son will know love, that he will know peace, for as long as possible. My hope is that he knows how special and awesome and important he is. My hope is that we will all make it through this, no matter what the outcome, and gain strength together. My hope is that we will all become better people having been on this journey.
I have hope. I see it in Bastian’s face every time he smiles. Despite everything going on, he remains positive and upbeat. That’s hope.