Do as I say…

Sometimes, in the realm of parenting, the whole “do as I say, not as I do” just isn’t good enough. Sometimes we have to both do and say, which can be scary as hell.

My 17 year old recently received a dual diagnosis of Lupus and Antiphospholipid Syndrome. Neither have a cure. Both are auto-immune disorders, caused by an overactive immune system that cannot differentiate between healthy cells and viruses. The immune system essentially turns on itself and starts attacking the good stuff in our bodies as well as the bad. Lupus can attack organs, while Antiphospholipid Syndrome effects the body’s red blood cells, causing excessive clotting.

She got the diagnosises after a scary week in the Pediatric Intensive Care Unit, after her doctors found a very large blood clot in her lung.

Being the rockstar of a person she is, she immediately went into activist mode when she got the news. She works hard to raise awareness about auto-immune diseases, and she wants to raise funds for research. I’m proud of her, and I’m proud of her ability to consider how these diseases affect others, and not just herself. While her diagnosis throws a wrench in some things, she has access to the top rheumatologists and hemotologists in the world, and has top-notch health insurance to boot. This will impact her, but not as much as it can (and does) impact the millions who have sub-par (or non-existent) health insurance, or have no access to qualified medical professionals.

She went to her school and requested permission to conduct a fundraiser. In response, they invited her to perform at the school’s annual variety show. Their idea was to have her showcase her fantastic singing voice, and take a few minutes to talk about these diseases, and how important research is to finding a cure.

Sounds awesome, right?

The only catch is that the variety show is in two weeks, which doesn’t give her much time to prepare. Nervous, she came to me and said she may decide to forego the performance.

As Mom, and as her biggest cheerleader, I know she can do this. I know it! 

I was full of advice:

There are many different ways to raise awareness. This variety show is definitely not the only way. I know your commitment to this has nothing to do with your decision about whether or not to perform, and I support you no matter what. That said, you have an opportunity to reach a lot of people during the variety show. When will you have that many people’s undivided attention again? Maybe not any time soon. At least consider doing it. Don’t let your nerves stop you from doing a really awesome thing.

I was proud of my spiel, and I knew she’d make the decision that was best for her. I was glad I had encouraged her to face her fears for the greater good, because that’s what living a fearless life is all about. We’ll always be afraid of something- it’s what we do in the face of that fear that defines us.

My daughter, heretofor and forever more known as “Smarty Pants” had a response. She said she would agree to the performance. She will sing a song – Michael Jackson’s “Man in the Mirror”, because the theme of looking within ourselves and making a change to bring about a better world is a good one.

This is all on one condition, however:

That I will perform with her. 

Oh, shit.

Most of my readers know that I am a hot mess, full of anxiety and fear and discomfort, and basically everything else that is conducive to being an extremely awkward human being. My awkwardness and anxiety was what I was trying to self-medicate for many years by drinking.

I finally stopped the drinking, but under all of it was that nasty anxiety and fear, just waiting for the opportunity to rear its head again. It never went away. As a result, I shy away from people in almost all circumstances. Especially circumstances that put me in the spotlight in front of a whole crowd of humans.

Oh, Jesus.

I’m sweating just thinking about it.

Not quite as well known as my anxiety is the fact that I play the piano. In fact, I’ve played the piano since I was five years old. I majored in music performance in college, oddly enough. I sing, play the piano, flute, and about 12 other instruments too. I even spent some time performing in Europe about 20 years ago.

However, when the anxiety got too bad, and the demons got to be too much to manage, I stopped.

I walked away from all of it, just like that. I haven’t performed in more than a decade, and even then it was at my own brother’s wedding. I do own a piano, and even a flute. I tinker around on them when I’m bored. Sometimes, when no one’s home, I sing at the top of my lungs to get it out of my system.

But that’s it. I don’t perform anymore. Ever. In fact, I was with my husband for about five years before I would so much as sing along with the radio in the car.

Yeah, it was that bad.

Now I find myself in a situation where the only way to really hammer home a very important life lesson to my child is to…

… Do as I Say – And as I DO.

I can’t keep my credibility if I don’t do this, because I know in my heart that the only reason I’d refuse is because of my own fears. That’s not the way fearless people live. That’s not the way I taught my children to live.

I have to do it, even as I know I won’t sleep a wink in the coming weeks. I am utterly convinced it’s the right thing to do, and it’s the only thing to do. 20 years from now, when I look back on that variety show, I know I’ll regret it if I ended up in the audience and not up on that stage with my child.

So, here I go.

 

 

 

 

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2 thoughts on “Do as I say…

  1. I know it doesn’t work like this, but I’m happy to be terrified for you so you have the freedom to kick ass. (As you will. Because Chrissy.)

  2. Good for her! And good for you! You’ll be fantastic, and if not, it doesn’t matter. You’re there for her and for her cause, and that overrules how bad it can possibly be. You’ve got this, and for all the right reasons!

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