A trend that's actually making a huge impact, and you're annoyed.

The ice bucket challenge.  How many of us are so aware of this?  I'm sure somewhere in your conversation today, you will speak or hear about a bucket o ice!  Have you been challenged?  Taken the challenge?  Have no idea what I'm talking about?  Ask any random person to show your their Facebook, IG, Twitter, or even Google Nightly News, ice bucket challenge.  You will see video after video after video of people pouring ice water on their heads.

Jake, Finley, and I have even done it!

I will admit, I'm a regular on social media.  I have a love hate relationship with it, but none the less, I'm more addicted than I'd like to admit.  We all see things posted, tweeted, or pictures that we don't agree with.  We have that right to disagree or not "like" something.  We are all entitled to our opinions.  I'm not one to usually speak up about something I disagree with, unless it really hits me hard.  I don't like to stir the pot, per say, and avoid confrontation at all costs.  I like to keep the peace.

Last night was a different story.  I was scrolling through my Facebook news feed and saw a post from a so called "friend."  I can't give you every word they said because today this person's Facebook has been deleted OR I've been blocked.  So, the post went something like this.  I'm so tired of seeing all these ice bucket challenges.  I think it's just so stupid that people are doing this.  I'm so ready for this to be over so that my news feed isn't clogged with all these stupid videos.  Maybe I'm just a jerk, or maybe I'm just done with Facebook.

Along with all the videos circulating out there are articles people have written for and against the ice bucket challenge.  I've read both sides.  I've learned a lot about ALS and also learned that this challenge has raised millions for this devastating disease.  As far as the articles written against this challenge, the only thing that I can find in these articles that I agree with is that if you are dumping ice on your head on not making some sort of donation, your kind of missing the point.

So, my response to this person's post was this.  "I happen to think the ice bucket challenge is a great thing.  It's bringing awareness and funds to this life changing, terminal, no cure, devastating disorder.  But, hey, maybe I'm partial because my daughter has a terminal, no cure disorder and this ice bucket challenge has brought awareness and funds to our foundation that supports medical research.  I wish more people would stand up for these horrible disorders."  Or something along those lines.

Annoyed with your facebook feed being clogged with these videos?  I'm not sorry for it.  These rare diseases need a voice, and admit it, these videos of people dumping water on their heads made you smile or laugh.  It's trending now, so don't worry, a few weeks from now you'll probably see only a few videos a day. 

 My typical facebook feed reads a little like this:

• Please pray for my daughter, she had a horrible seizure last night and we had to rush her to the ER.
• My son actually smiled today.  I haven't seen that beautiful smile in months.
• What medication are you using for your child's movement disorder?
• I fear my son is losing the ability to walk.  What brand of wheel chair are you using?
• Today my worst nightmare is happening.  We have to say good bye to our 12 year old daughter.

So, you'll have to forgive me for being a little sarcastic and opinionated in this blog.  However, I will never apologize for being a voice for my daughter, her friends with MPS, or any other rare disease that needs to be heard about, funded, and for people to just gain compassion.

Not sure about ALS or what it's about?  I found this article to being extremely good.  http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/

And just as a side note, I'd dump whatever it took over my head to cure my daughter!