I don't know about you but after 12 years of dealing with Duchenne I have learned to become quite an actress.  Early on I realized that no matter what we do we are on the outside of the "mom" world.  You start to realize either you need to get on the bandwagon and act like all the inane problems mostly self created everyone have are interesting or choose to sit alone on the sidelines with your real problems that you did not create and wallow in self pity.  So, I took up my acting career in order for my boys to have friends, me to have "friends". So lately I have been commiserating with friends who are terrified that their boys just got their driver's licenses, what lacrosse uniforms should look like, how disappointing it is that their youngest may not be the athlete his brothers are..on and on and on..But this last week has been so excruciating that I am about to come off the stage and out of my character and scream at the top of my lungs.  One friend I met last week for happy hour told me the unfortunate tale of her sons both in rehab for heroin..the shooting up kind..they are 19 and 16.  She seriously started to compare that to me dealing with my 2 teenagers with DMD..What?...really?  Then tonight a friend but not really a friend as I feel like I acted my way into this friendship out of the fact she is friends with other friends posted something so offensive on facebook I lost it.(sort of)  She is the kind who posts every little detail about her life and constant travel blah blah blah..so she and her family are stuck in the airport waiting for a flight and she posts a picture of her 15 year old daughter in an airport wheelchair with the caption, "B...entertaining herself while we wait"..so when the actress kicks in I usually  ignore it but not this time..I post back.."sorry..really not funny"..she says "well not trying to be funny she was just wasting time and this trip is not for something fun".. in my mind I say so how is entertaining yourself by playing with a wheelchair have anything to do with that?..I didn't post another thing..but had so many more really horrible retorts but stopped as how does that help our cause?  It doesn't..It just ends up with me looking like a crazy person. must get back to being Meryl Streep once again..where's the wine?..

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Comment by Lisa Groeger on June 16, 2011 at 8:21pm
Very funny and true..I guess the lesson here is to keep doing things for awareness in hopes to get through to some of them.  What is most disappointing to me though is these are people who helped me with fundraisers, see what is happening to my boys and still can be so incredibly insensitive. good luck on the carnival..check your makeup frequently:)... 
Comment by Andrea Cleary on June 16, 2011 at 6:44am

Agree with you wholeheartedly Lisa.

Tioday I get to walk the red carpet, as I volunteered to help out at an end-of-year school carnival. What was I thinking? I have a chair and book packed for when I need a break from the mom chatter, blah, blah, blah. (I think I should slip a margarita or two in there as well)

The only good thing is that I shamed them into holding a fundraiser for MD as part of the activities. I bet they think I have put a downer on there carefully planned "fun". I am taking both the scooter and wheelchair and putting on demos for their rude little children as to how hard it is to get around in a world not built for wheels.

Damn, I'm so inconsiderate!

Excuse me while my stylist puts the finishing touches on my hair and makeup. Remember, it's better to look good than to feel good! Now, where's my Oscar?


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