Wednesday, October 1, 2014

ALS Ice Bucket Challenge 2014

I wrote this entry awhile ago, August 13 2014 during the middle of the ALS Ice Bucket Challenge and never finished or posted:

I started this blog to be about my kids and our unique journey together, but I also wanted it to be something they can look back on and remember when they are older, or something I leave for them to hopefully learn from. So, I pause from writing about them periodically, to writing about something else that is very personal to me, but also to so many others.

I cannot let the opportunity go by without writing about the recent ALS Ice Bucket Challenge. As almost everyone knows that is how my dad lost his life.  I have seen so many wonderful videos of people taking the ice bucket challenge, sports teams, actors, musicians, Jimmy Fallon, Martha Stewart, just to name a few. I was at the neighborhood pool today with my kids and the lifeguards were doing it. Its everywhere! Which is amazing because most people don't even know what it is. I think I have waited since November 2008 for ALS to get this kind of coverage and I am in awe. Every single person that has posted a video or made a donation, you are making a huge difference, something I've never seen before and I'm amazed and grateful to all of you, even the millions I have never met. Thank you. But with that comes a lot of cruel, disrespectful jokes which as I hard as I try to not take personally, it is personal to me. Because I miss my dad, because he never got to walk me down the aisle, because he never got to meet his grand kids, because I never got to say goodbye. But although I took the Ice Bucket Challenge in his memory, that is not the main reason why this challenge is so important and its not something you should joke about. ALS is no joke! It kills and it does not discriminate. Anyone can get it...even you or someone you love.

I admit when my dad told me and my sister he was sick, I had no idea what it was. I think I had heard of it before but all I kept thinking in the back of my head is OK well they can probably treat it right? WRONG! There is no treatment. No one knows for sure what causes it and there is no cure. The average life expectancy is 2-5 years, my dad was gone after 4 months.

As heart breaking as it is for me to admit... it is too late for my dad. The reason why its important to spread awareness for this disease and raise money is because there are so many people out there dying right now and their families are sitting there watching them, completely and utterly helpless. These people might give anything to say "I love you" to their husband or wife but their voice muscles don't work anymore so they can't. They would love to give their son or daughter a hug but there arm muscles have deteriorated to the point they cant even pick up a fork to eat on their own. They may have once danced across the stage, or hit a home run out of the ball park, or ran marathons, but not anymore. They are fighting to breath because their respiratory muscles are slowly deteriorating as well. Their bodies are literally withering away while their mind stays perfectly in tact so they are aware of every single thing that is happening to them, much like being trapped inside your own body.

I'm not trying to be negative here, but everyone needs to understand that this is a very serious disease that is not as well known as some of the others and deserves some attention too. The people that are dying from this disease or have not been diagnosed (yet) deserve a chance. A chance my dad didn't have and right now no one else does either. So it may seem like some silly social media fad and a "waste of water" but its not, its peoples lives, so stop making jokes and start giving others hope. Sometimes hope is all that they left when they are told they have ALS.

I want to thank everyone that accepted the challenge from me or donated money and for everyone that followed after them as well. Some of you have been supporting me and this cause since my dad died over 5 years ago and I just want to say that means the world to me.

Since the challenge began the ALS association has raised over $114 million dollars, and has had 2.5 million first time donors, numbers they have never even come close to. I have to say my hope is still alive for a cure and who knows... because of this challenge maybe I will even be around to see that day happen.

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