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Tuesday, August 19, 2014

conflicted

im conflicted. over ice.
of all things.

the ice bucket challenge, that has raised millions of dollars and tons of awareness for ALS, is all over the place.

every time I turn around i see a friend or a celebrity dumping ice water on their heads and doing it in the name of ALS.

almost as soon as it got big, the articles criticizing it were popping up too. saying it was narcissistic, wasting water, that no one was really donating anyway and no one says what ALS is in the videos...on and on and on.

and it pissed me off.

before rett syndrome became my cause, my cause was ALS.  ALS killed my mom.  my 63 year old vibrant, stylish and very full of life mom.  killed her in the most terrifying way. she had symptoms way before her diagnosis, that were minor. as soon as she was diagnosed it went quickly.  she lost the ability to speak, then to eat and in the end lost the ability to breathe. she was afraid. and 3000 miles away. my daughter was 7 months old.

less than three years later I had a new cause-rett syndrome. the ALS walk I had been participating in took the back burner and the Strollathon went to the front. my mom was gone, she wasnt coming back and I was desperate to try to save my daughter from the unknown. i dove in to rett syndrome head first and never really looked back.  and now as Im typing this im realizing this ice bucket challenge has brought up a little guilt for that. for giving up on ALS, and on my mom.

im also guilty of something else. something else that is bothering me about the attention ALS is getting-- of being jealous of other causes and the attention they get.  i know i have written about the feeling i get each october and i see pink everywhere-at my gym, on NFL uniforms and MLB bats. and I would think to myself-man, what if that was purple for rett syndrome?  WHY doesnt rett get the attention it deserves!?

im looking at this with new eyes now.

this is the trend in the rett community--¨how can we get on this ice bucket thing?¨ ¨why didnt we think of this?¨  ¨I wont do it because I only want to give my money to rett syndrome!¨

and my unsolicited advice is this: give to whatever charity you want-do it by dumping ice over your head, running a marathon or just by clicking a button online. or have a fundraiser, invite your community and your friends and feel good about what you are doing, though it may feel small. things like this start small.  start something.

and please be happy for the attention ALS is getting-because this money and awareness will make a big difference to someone elses mom one day. a day like this will come for rett too. people in the rett community ARE working hard-at this very moment- research in dark quiet labs, starting community clinics and traveling to trials and chairing strollathons.

we are all in this together.  all causes are important because we are all human.  so please dont get mad at me when i dump ice over my head sometime in the next few days. its for my mom. :)