Saturday, August 12, 2017

Erin's Day For ALS Awareness

Erin's Day For ALS Awareness

I've been trying to wrap my ahead around the task I've set for myself - keeping Erin's
memory alive, raising awareness for the disease that took her (including figuring out and holding myself accountable for whether or not ALS is actually a disease or a disorder, and whether or not there's even a frickin' difference when all is said and done. Putting a pin in the fact that my last sentence was probably maddeningly long to read, I do want to spread awareness and raise money for research on the disease that I've heard too many people ask, after I tell them about Erin's Day, "What's ALS?"

It's always interesting when news pops up about something when you're constantly thinking about it and researching it. Radiclava, the first new treatment for ALS approved for sale in 20 years, showed up in the news mere months after Erin died, inciting hope for living fighters for the first time in far too long. A week ago, I read an article on about Steve and Hope Dezember - Steve had been diagnosed with ALS shortly after meeting Hope and they have been fighting together ever since. And with the recent loss of Sam Shepard to a hard fought battle with ALS, it seems that the disease is front and center for now.

This search for information has shown me a lot - I officially have a Pinterest board dedicated to ALS-related pins - and it's also thrown me for a loop. To clarify, I'm dealing with a little bit of guilt right now, because the information has really been out there all along - and if it's been invisible to me, then it's invisible to plenty more, because in many ways I'm about as 'basic' as they come. So, if nothing else, this last month has strengthened my resolve to raise awareness and continue to raise dollars in Erin's name.

Additionally, I've been blessed to have my Goddaughter (Erin's eldest daughter) Danielle and her daughter (my tiny little Sweet Pea of a grand-niece) with me for the last couple of days - they'll be here only another week or so, but it had been since Erin's funeral that I hadn't seen them in person. Erin raised a brilliantly strong woman before she passed on, and I don't doubt for a second that Danielle makes her mother proud daily as she continues to fight the good
fight in her own personal life. I'll admit it's also been a little tough watching those little mannerisms that scream 'Erin' - my heart sings and breaks every time Danielle smiles or chuckles because... well, there's Erin. And looking into Dani's eyes? Erin. Danielle even holds her daughter the way Erin held Danielle was Dani was the same age. I think Dani must have seen the pain in my eyes (sorry about that, Munch) because she confessed a couple of days ago that she tried to turn away so that I wouldn't see how she cuddled her daughter, knowing it was the way Erin comforted her. I told her I'd rather see Erin in her every single day than to forget what my best friend looked like.

So, about that video...

To you, reader, I ask - have you made your video yet? Have you challenged your friends? The only way to spread the word is to actually spread the word, right? So make your video, babies. SING. SPREAD THE WORD. DONATE. #ALSawareness #ASongForErin #RIPQueenSaphire

RIP Erin 1977-2017

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