This post is from an anonymous parent of one of our Love Bus children, but her experiences in having a son with childhood cancer are shared by many parents and caregivers.
I have had it up to here with my pantry for months. Crap keeps getting thrown in there, and I couldn't find anything. So today, on a quiet Monday, I decided to clean it out. It had never really been organized when we moved in our house over three years ago, so I took everything off the shelves and got down to business. As I was reaching in the far recesses of a corner shelf (it's a deep pantry that has triangular shelving on one side), I found one of my old breast pump bottles with brand new membranes still in their plastic bag. I reached for the bottle, paused, looked down, and felt, in the space of a moment, a loss that I had not ever fully acknowledged out loud.
We are never going to have another child. We are not going to try for another child. Cancer took that from us. It's cancer's fault. And today, when I least expected it, I grieved for the child I wasn't even sure I was ready to try for almost three years ago. I grieved for our tiny family. I grieved for me, and my lost child. I grieved for my husband, who missed out on my pregnancy and much of our son's first year of life, and who will now not get to experience any of what he missed the first time around. And I grieved for my son, who will not have siblings to grow with, to fight with, and to laugh about his parents with.
Everyone likes to say that cancer doesn't win, that we can't let cancer win, and that we can't let cancer define our lives. I am doing everything in my power to not let cancer win the war over my son. But cancer wins this battle. It does. It wins because when your child is diagnosed, fear becomes an unwelcome squatter in your heart and soul, and that fear is stopping me from wanting to have another child.
You see, three years ago, we were all set to try for another. I wasn't 100% sold on the idea at that moment-- I was enjoying having my post-baby body back, I was enjoying finally being done with breastfeeding after nursing for 2 years, and I was enjoying finally not worrying about my son. He was finally talking. He was a great sleeper. I was finally believing that maybe he didn't have autism, and that he would be "ok" and "normal." (What crap, I see that now.) However, I wanted to have kids somewhat close in age, and I wanted to have our second before my husband hit 40 years old, and before I hit 35. I went off my birth control the end of May 2013. We were going to give my body a month to adjust itself, and then we were going to start trying in earnest. Then, June 5th, our son was diagnosed with leukemia.
One of the first non-cancer related calls I made was to CVS to get my birth control refilled. My husband and I agreed that there was no way we were going to try again for the foreseeable future. The foreseeable future became treatment. For me, then, it began to extend past treatment. I didn't want to get pregnant while he was on treatment. Then I didn't want to get pregnant in the first year he was off treatment in case he relapses. Then I started doing the math-- by the time I would be even somewhat comfortable trying again, my husband will be almost 45, and I will be almost 40. It took us almost a year to get pregnant the first time. Now, a whole new set of worries crops up-- the worries about having a child with a husband who is as close to 50 as he is 40, and the worries of being close to 40 myself. It is an undeniable fact that the likelihood of having something go wrong increases with parental age, and I can't have something else go wrong. I think I would be in a loony bin. Plus, our son would be almost 7 by the time we started trying again, and, at the youngest, 8 when the the new baby was born.
I realize that the entire paragraph above sounds like justification for my conclusion that we're not having any more, and maybe that's true. Maybe I am justifying it to myself. The absolute and unvarnished truth is, I think, that I don't want any distractions from my son. I don't want anything to take away from him. In honesty, I am afraid that I will feel that a new baby would be a distraction from my son. What if he relapses, and I can't give him 100% of my time and attention and care? What if he doesn't relapse, and I miss out on him enjoying life because I am caring for a new child? What if the new child is healthy, and I always love my son more because of what he went through? What if having another baby gives the universe some sort of signal that it's OK to take my son away from me? What if, what if, what if? Fear is paralyzing me, and it is fear brought on by cancer. Without cancer, I would likely have already had a second child. My son would have a sibling, and I would probably be another stressed suburban mom who really doesn't have that much to be stressed about.
I've had these thoughts for at least a year. For the most part, I push them away, and when I do reflect on them, I'm at peace with it-- or, at least I thought I was. It is what it is, and I love my tiny family. There are moments, though, like today, when the memories of nursing my son come flooding back, and when the tiny Medela bottle becomes a symbol of what will never be, that I mourn this loss; pediatric cancer steals so much from families, but, in this case, it has stolen something we never had. I don't know what is worse--the fact that it has stolen a part of our family that never existed, or the fact that I am allowing it to.