Happy Birthday, Colorado. You’re 137 years old today. Of course, you’ve always been here land wise – so you’re really much older – but just because you drew some new boundaries you get to knock a few years off. I’m going to do that, too, when I finally get my face lift.

So. What’s new? Well, summer is almost over. Our “summer of fun” list sits neglected, overtaken by stupid cancer nonsense. The good news is that Ben is currently showing no evidence of disease after his biopsy. The bad news is that we have to find a maintenance regimen for him to be on – probably for the rest of his life. I can’t seem to get used to that. The threat of a monster attacking is much different than having to learn to live with the monster systematically attacking. My yearn for normalcy has been relegated to living in a cage awaiting appeal. It might never get out. It’s not that I’m being negative, I’m being realistic. It’s a whole new world to get used to. Ben will most likely always be fighting cancer. And when he’s not fighting cancer he’ll be fighting the side effects. And, on top of that, he’ll have to navigate the usual weirdness that comes along with adolescence. Some days, my heart simply can’t take it.

The moment he was placed in my arms my whole world changed. So many mothers feel that deep inner shift when they meet their child face-to-face, but for me, I never cared much for children, so my inner shift was quite profound. It was a shock to my entire being. I felt a love that I had never experienced before. I never wanted to be away from him. I hated going back to work because I knew I was missing something wonderful. He became my everything. We had so much fun together. And when he was diagnosed I just didn’t understand. This beautiful child. This wonderful boy. My heart. And we were living under the threat that he’d be taken away at any moment during that first year of therapy. When he got better and stayed healthy for four whole years, I thought he’d beaten it.

I thought for a long time that he’d get better and better and have a pretty strong chance at being a normal kid. But each time this monster strikes his body gets weaker. It gets harder. Not just physically, but emotionally, too. And while I don’t ever want my son to suffer, I just can’t bear the thought of losing him. None of this is okay. None of it.

So, what’s my option? Suck it up, I guess. Continue to be his caregiver. Stroke his bald head as he worries about a stupid needle poke. Hold the yellow puke bucket as he wretches. Tell him that I’ll never leave his side during this battle. I’m his sidekick. I’ll even wear a stupid costume if it would help anything. But the days keep going. I still have to wake up. And do the normal stuff. Even thought I’d rather not.

How do you train your heart to take repeated beatings? When will I ever get to the point where I’m not worried about losing him? My heart silently screams nearly all day long. I rock it and pet it and try to get it to quiet down, but there just doesn’t seem to be much relief. I’m hoping that this next study is the answer for Ben. People get all caught up in what worked (or didn’t work) for their kid versus what worked (or didn’t work) for mine. The reality of it all is that it’s a total crapshoot. Nobody knows. We’ve been able to slow it down here and there. We’ve even been able to beat it twice. But we just don’t know. We won’t know if he gets that next birthday until we reach it.

For now, I guess we just have to let it ruin a little bit more until we get it under control again. But it’s something that doesn’t want to be controlled. And I’m afraid that it will show us – again – that it’s stronger than we want it to be and we simply don’t have the tools to fight it.

How unfair is that?


Join the Conversation


Leave a comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: