when i’m awake at 4 a.m.

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.




Filed under Boy Genius, insomnia, sperm

9 responses to “when i’m awake at 4 a.m.

  1. First off I want to let you know that you & J & BG are in our thoughts & prayers every day. We are always sending you loving healing thoughts. Secondly, I want to share some optimism with you. While I know that in your situation it is hard to stay optimistic at times, this post made me think of two stories that may help you a little. Our friend was diagnosed with cancer when he was 15 & he survived. He was also told that because of the chemo he would never have children. 13 years later he & his girlfriend found out that they were pregnant with a healthy baby boy. A girl that went to school with him & my husband was also diagnosed with cancer when she was a teenager and told that she too would never have children. She is the proud mother of a very healthy baby boy, as well. I know that this is not true for everyone that goes through chemo before they are able to have children. But I just wanted to let you know that there is a chance that BG could have children of his own some day.

    We are sending positive, healing, loving thoughts to you all and L is constantly talking about BG and he misses him and tells us how BG needs a big band-aid. Stay strong & know that we are all here supporting you & your family through all of this.

  2. I can’t even fathom the thoughts that must be racing through your head. Just know that so many of us have been touched by your story – children all over are getting more snuggles and more love because you are sharing C’s story. Sending positive healing thoughts to you all.

  3. You are welcome to have any and all of these thoughts. I can’t imagine how surreal it all must be thinking about it all . But we are all here surrounding you, J and C in this journey and hoping that the path leads to health sooner rather than later. You are all truly an inspiration.

  4. Gia

    I don’t think my words are enough…I can tell you that my tribe and I are always thinking about you and praying for you…all of you…

    Science is advancing everyday and BG may (if he chooses) be a father! His children will be healthy, happy and beyond loved!

    Sending you positive thoughts, prayers, and lots of love!

  5. I know there are lots of ways of having children, but I undersand your thought process… there is definitely something heartbreaking about the fact that BG will be infertile at the ripe old age of three. Hugs! You all are in my thoughts!

  6. Lex

    That’s so tough. In a way, BG is lucky to have parents like you who can understand and empathize with infertility (although obviously you overcame the lack of access to sperm) and he has one parent who is not biologically tied to him, who loves him to no end. That will say a lot when and if he has to deal with this at some point in the future. I don’t mean to minimize at all, and I hope that makes some sense. Nonetheless, it’s a heartbreaking place to be.

  7. chunkandmommy

    You are in my thoughts every day, and after reading this post, my heart aches even more. As odd as it sounds, I too often think of being a grandma (maybe because I was always closer to my own grandparents than parents) and I cannot imagine what you are feeling. There really are no words, and even though it is years out, OF COURSE it is okay of grieve. This will be a blow to BG one day and shouldn’t be an afterthought to doctors. I do hope that technology and medicine continue to catapolt and maybe (?) it won’t be an issue… but, for now, as a mom, your concerns and anxiety hold so much validity… hugs.

  8. So many losses for all of you as you go through this. I am sending you warm thoughts and all of you hunker down through this time.

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