We were under the weather yesterday. Ben was struggling with a cough, Madeline was sniffling, my throat felt scratchy… so we just stayed in bed a good chunk of the day. I was disappointed because I was hoping to go do something fun… summer is quickly running out. There have been a few fun moments here and there but there have been no vacations, no events – even his birthday was shot. It’s been a cruel summer.

Many folks we come in contact with ask Ben if he’s had a good summer off from school. My brow furrows. The corners of my mouth drop into a frown and I give them a look that begs the question, “Are you freaking kidding me?” Meanwhile, Ben says, “Yeah, sure.” Because he is probably thinking about video games and their rhetorical question doesn’t have the same meaning to him that it does to me. I want Ben to shake with excitement as he recalls all the wonderful things he experienced this summer. I want him to have had so much fun that he simply cannot remember all the fun stuff he did. But since none of that is true… well, none of that is true. His summer was spent throwing up and losing his hair and tethered to a bed unable to go to the bathroom without a big set change. Honestly, potty time is a big production – people backstage moving everything around so he could perform the next act in the play… which is simply a moment to himself so he could use the toilet. NOT what a 12-year-old boy should be doing. Then again, he’s not a typical 12-year-old. He’s Ben. And what he is is wonderful. I wish I could face each day with the grace he exudes. Instead, I am a big freaking crybaby.

“Not fair,” I cry, as I make breakfast that he probably won’t eat. “Not fair,” I cry, as I draw up a needle full of medication that is going to burn as it sinks below the surface of his skin… which I have to administer, by the way. “Not fair,” I cry, as I sign the consent form allowing a surgeon to cut into him, to give him toxic medications, to agree to a new rash of terrible side effects. “Not fair,” I cry, as I ask him to participate in signing paperwork that guarantees he will never produce his own children due to the harshness of the therapy. Oh, okay, he lost this skill back when he went through transplant in 2004, but he doesn’t know that. He doesn’t know that he cannot produce biological children. I know there’s adoption and all that jazz, and if I believe all the statistical evidence regarding long-term survival of pediatric cancer patients, then I fully understand that he will never move out of my basement or have a real job, let alone produce any grandchildren for me. Although, daytime television warns us all that just because your child lives in the basement and is unemployed, it doesn’t mean that he’s not out there fathering children. But my Bean will not be one of those. He simply won’t be able to.

So, I cry, “Not fair.” But life isn’t fair, is it? You’d think I’d have a better handle on that by now.

So, after resting nearly all day, I took Ben and Mad to Outback to celebrate the fact that Ben’s bone marrow is all clear. Ben loves Outback. He ordered a gigantic steak that he barely made a dent in. That’s how Ben rolls 😉 Anyway, as we were leaving, Ben held the door open for an elderly couple. They were all smiles as they admired this polite little man without hair. They weren’t sure what else to say but I could sense they wanted to remark about the obvious. They refrained though. The woman awkwardly continued to make conversation, which manifested in her telling me I have really nice legs. “Oh, they’re so beautiful,” she said. I ate it up, I’m an attention hog when it comes right down to it and I have always felt that I have fat knees. So, I enjoyed her awkward attempt to not talk about Ben’s cancer.

My glee was short lived, however. As we drove away from Outback, I passed what appeared to be an older lady – I’d say mid-to-late 50’s, wearing a visor. It was clearly part of a fast food uniform. I got sad for a minute that this woman was working fast food at her advanced age. Not knowing anything about this woman, I felt bad for her, which is not fair. Maybe she likes working fast food? Maybe there’s a backstory there that I know nothing about. But what I do know is that I worked fast food when I was 16. I hated it so much that it only lasted six months. It’s a thankless job, pays nothing, and the management usually stinks. If they have any issue with you, you end up on lobby detail, which includes cleaning the restrooms. That job is one I’m sure is on the job board in Hell. I imagine Hell has a board full of job postings, right? Bathroom detail must be high on that list. Anyway, as I drove past her I thought to myself “there’s my future. I’m going to be a 61-year-old woman working in a fast food restaurant.” Madeline asked me to restate what I’d just said, which alerted me to the fact that I’d said it out loud. “Oh, nothing, honey,” I reassured her. “I’m just saying that I’m probably going to work at Hooter’s when I’m 61.” To which, my brilliant daughter retorted, “But they’re going to have to rename “Hooter’s” something like “Floppy’s” if old people are going to be working there.”

Pause two beats. Then let the crying with laughter begin. Of course my brilliant Madeline knows how to bring levity to the situation. That’s one skill where we excel. Too bad it doesn’t pay.

As long as I can intersperse my bouts of being a crybaby with joyful moments of crying with laughter, I guess we’ll all survive this mess in the long run.

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  1. worker..restroom attendant. What do all those titles matter when you have your calling in this life. You are the icing on the cake! You have Ben and Mad for your beautiful children. No life aint fair..but it is full of beauty and love and you’ve got it all!! Love you Sarah:)


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