Posted bysarah 5 Comments on

Despite all the hard work I’m doing on changing my perspective, there are days here and there where I just crumble like a delicate butter cookie under the weight of an 18-wheeler wearing snow chains. Yesterday was one of those days, so today I’m sporting what I’ve dubbed a “sad hangover.” I’m all achy and fuzzy brained, low on energy and carrying around an impending sense of doom like it’s a glorious fashion accessory.

I never did learn to accessorize properly.

Now, the new, “kick-ass” me would try to slough this off as soon as possible, turn on my inner light and inspire all of you out there to keep on trucking despite the circumstances. Today, however, I’m on slo-mo through a big bowl of coagulated oatmeal that someone left on the counter with the hope that somebody else will clean it up.

Ben noticed immediately that one of my Christmas bulbs was burned out, which was causing all the other bulbs to underachieve. I was sitting on the couch owning my sadness when Ben leaned over and gave me a big recharge on my batteries. He hugged me hard, looked deep into my eyes and started singing the chorus from a wonderful song from the Broadway musical “The Book of Mormon” called “Turn it Off.” Now, I’m going to post a link to a YouTube video of this snappy little tune, but I must insist that you only watch if you have a heightened sense of humor and appreciate making a complete mockery of difficult life events. Oh, what am I saying? Y’all read my blog… I think you’re on board with how I roll. If you choose not to watch the video (which is my official recommendation) basically all the song is saying is to bury any and all uncomfortable feelings and go on with your day. It goes against everything I’ve been so diligently working on, but him singing that song to me made me laugh. And that’s what I so desperately needed.

Warning: Highly inappropriate and completely offensive content follows. Enjoy.

And there’s freaking TAP DANCING! We all know how well I respond to tap dancing.

What’s got Sarah so blue and in need of “turning off” her emotions? Well, Ben had an appointment with the endocrinology department at Children’s yesterday. If you’re not familiar, or simply don’t remember basic biology, your endocrine system is made up of glands that produce and secrete hormones. These hormones regulate the body’s growth, metabolism, and sexual development. Now, I am well aware of what Ben’s doctors told me when he was first diagnosed in 2004… with the amount of therapy Ben will endure, he will most likely be sterile. He was two years old at the time, so I gently rolled up this tidbit of information and pushed it deep down into a box of things I don’t want to think about, and there it stayed until yesterday.

At age 15 1/2, Ben is 4’11” (or 59 inches) and weighs 72 pounds. Here’s a chart of what’s typical for boys:

Typical Height and Weight Charts
Age Range Height Weight
12-13 years 58 – 62 inches 85 – 100 lbs
14-15 years 63 – 66 inches 105 – 125 lbs
16-17 years 67 – 70 inches 130 – 150 lbs
18-20 years 68 – 70 inches 150 – 160 lbs

This is probably one of the hardest pieces for him to deal with. Well, discounting the multitude of friends dying from the same disease and battling a relentless bully every single day. People who don’t know him assume he’s about ten. For a 15 year old, that’s freaking humiliating. I mean, he’s SHAVING for crying out loud! He’s studying driver’s ed! I have hoped and prayed for the BEST for Ben and I can’t find any solace in the fact that YES, he is getting ready to learn how to drive but DAMMIT if he still doesn’t fall within the parameters of needing to be in a car seat! NOT FAIR! (it’s okay if you chuckled at this… just bringing levity to the whole scenario.) I mean, I didn’t need to wear a bra until college… generally, my people are late developers, but it doesn’t matter when you’re so acutely aware of your physicality. This age is tough for any kid, let alone a kid like Ben.

And here I am tap dancing circles around him trying to cheer him up after the hostess asks if he needs a kid’s menu. I mean, didn’t she see my desperate expression of “PLEASE don’t ask if we need a kid’s menu!” I’m not sure exactly what that expression looks like but I like to think it’s enough to get someone’s attention. Maybe I should practice in the mirror? Or maybe I should simply stop trying to shield him.

Because, here’s the thing: He can handle it. Yesterday, Ben finally learned that he is sterile from years of intensive therapy. His doc was talking about all the testing they were planning to do yesterday to check his bone age, thyroid levels, etc… fertility included. My brain started buzzing and I shot the doctor my “look” (that clearly needs work) of “PLEASE don’t tell him right now that he’s sterile.” She didn’t catch it. I put everything on hold and felt odd about asking Ben to step out of the room because we tell him EVERYTHING! He deserves to know! But for whatever reason, every cell in my body revolted against Ben knowing this bit of information. It hurt me. I don’t know why, but it hurt me. I didn’t want it to hurt him, too. Ben gave me a look filled with curiosity as he walked out of the room. I felt silly about my behavior but quickly went on to explain that he didn’t know about the whole infertility piece. I wasn’t ready to say it out loud.

The doctor consoled me and said that she was more than willing to guide us through that discussion with him. Well, it didn’t matter, because that kid was outside the door listening to the whole thing. Ben needs hearing aids, MY ASS!!

We talked about it on the way home. I cried. He didn’t. He absorbed it and will deal with it when he’s ready. While I was driving, he grabbed my hand and filled me in on all the wonderful things that he won’t have to deal with due to his being infertile; like he’ll never hear that he knocked up his high school sweetheart… he’ll never hear Maury Povich say “You ARE the Father!”… and he’ll never be a part of Mtv’s “16 and Pregnant” storyline.

And then, as we were laughing over his hilarious comments, my beautiful son said the following: “There are many ways to have a family, Mom. I’ll figure something else out.”

My God, do I love this boy. He continues to teach me every single day on how to deal with adversity.

I’m just sorry he’s an expert on it.

 

 

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5 Comments

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  2. Ben is an incredible young man. He is bigger than most kids in the important places..his heart. We are all learning from him and we appreciate that so much. Merry Christmas to all of you.

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  5. I agree with Kellie- you can tell you’ve done an awesome job being his mom ! Ben’s response was perfect.

    Also, I can totally relate to the “old enough to drive but still within the parameters of needing a car seat” issue. I’m only 4’10” and it looks like my poor boys have inherited this shortness as well. Sigh.

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