These days, when I finally go to sleep, I’m usually out. If I’m at the family guest house down the street, I sleep like a log, and wake up to the commuter train rumbling, my back screaming from hard sleep, and my gut full of anxiety–but at least that’s at 7 a.m. or so. Here in the hospital, I sleep on this pull-out chair bed, and I awake to every alarm, creak of a door, “code blue” announcement over the overhead paging system, and the nurses’ attempts at drawing my son’s blood from the tiny space between my bed and his (This annoys me to no end because when they’re really good night nurses, they just bed over the bed to reach his arm. No need to wake everyone!). This last item is something that happens every morning, and it wakes me up most of the time. This is when my mind starts racing, when I can’t go back to sleep. It’s when I start to obsess over the things I cannot change.
For the past few days, I cannot stop grieving my biological grandchildren. I know. That was a weird statement, but here’s the reality that I haven’t discussed here: after his bone marrow conditioning (read: hardcore chemo that essentially kills off all the healthy blood cells in our child’s body), our boy is going to be infertile. At the age of three, this hardly matters. I cannot imagine what this will mean to him as he is older, and I can’t imagine how we’ll tell him. When the doctor from the bone marrow team told us this bit of news, it was one of a thousand things she rattled off in the space of fifteen minutes. I remember her saying in her thick Croatian accent, “But as you know, there are many alternative means of having children.” I remember my heart breaking for my son. Over and over and over again.
Obviously, I know that there are many ways to have a child, and with the appropriate preparation, our son will accept that this is his lot (if he even wants kids), but I can’t help but be sad that I’ll never know what BG’s offspring would look like, and I can’t help but be sad that he won’t ever look into his own child’s face and see traces of himself. (How’s that for projection?)
Our research doctor, this brilliant guy who spends much of his days looking through a microscope, tells us that by the time BG is old enough to start a family, chances are science will have an answer to his infertility, that this certainly isn’t something to fret over. Maybe he’s right. I mean, he is the sort of person who knows where that is headed.
But then there is the issue, too, that maybe a person with my son’s genetic mutation shouldn’t reproduce. Maybe chances would be too high that he would have to go through the same nightmare we’re facing with his own child. Science doesn’t know this yet, but I can tell you that it has me wondering about my own genetics, whether or not this is something I somehow “gave” to him, whether it is something a future sibling of BG’s would have to worry about. It’s pointless to think about this right now. I can’t do anything about it, but still, it’s there.
These aren’t really thoughts I want to be having at 4 a.m. They aren’t thoughts I want to be having any time, but I’m learning every day that this disease we’re fighting and the treatments to save our son’s life are going to affect us forever. Sometimes it’s hard to grasp that.