Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. I was secretly really excited to do this. Over the past couple of weeks I've seen a lot of videos of people pouring ice water over each others heads and I've heard a lot of comments and complaints of people being tired of seeing the #ALSicebucketchallenge showing up on their newsfeed, or how it's not actually doing anything - just another silly trend; people jumping on the bandwagon. But the thing is, it's raising a TON of money to help research ALS. Like, millions. Along with raising money, it's also raising awareness. People are curious about what this whole "ALS" thing is, so they google it, and they research it, and they gain a little bit more knowledge of what this awful disease is and how it can affect peoples lives. But not only is it raising money and awareness for ALS, it's also blessing and encouraging the families that deal with ALS on a daily basis. Think about it. Even if it is silly and a lot of people are just doing it because it's a trend, people are acknowledging that it exists. They're showing that they care. They're taking time to learn about what it is. They're donating money to help with the research and support of it. They're spreading the news so that others can learn about it too. Though we all receive things differently, think of the of hope and encouragement that can come from that. Seriously. Stop and think about that. To me, that kind of encouragement is far more important than what we desire to see or not see on our social media sites. We can put on our big girl (or boy) pants and suck it up for a little bit and let this encouragement and awareness continue. I think it's beautiful. On a personal note (though it's nowhere NEAR the struggles and discouragements of ALS), if people were spreading the word about Celiac Disease for what it ACTUALLY is - not just some dumb food fad where people don't actually know what gluten is - and people knew about some of the frustrations and daily challenges that it causes, I would lose it. But in a good way. Like, my eyes would undoubtedly spring a leak. Here's the thing. I feel SO alone and unheard when it comes to my Celiac Disease (mainly due to the severity of it). I don't feel like anyone (aside from a small few) really understands what it's actually like or how discouraging, frustrating, and challenging it is. Sometimes I feel like people are constantly trying to tell me how I should handle things in regards to it, or tell me what is and isn't okay when they haven't even walked a step in my shoes. That's for Celiac Disease. I can't imagine the pain, frustration, and challenges that come from ALS. And honestly, I don't want to. It's one of those things that reminds me of how fortunate I am to really live life - even with Celiac and a misaligned skeleton. Anyways, that's my take on the matter. There's a wonderful article I read about what the ALS Ice Bucket Challenge looks like through the eyes of a family struggling with the disease. It's written by an incredible woman who is a big part of the ALS community and author of the book Beautiful Battlefields, where she talks about conquering the battles of life through Christ and tells her own story of her battle of watching her husband suffer through ALS. Her name is Bo Stern, and this is what she has to say on the matter : http://www.faithit.com/heres-what-an-als-family-really-thinks-about-the-ice-bucket-challenge/?c=tsal
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This girl . . . She makes my heart and life so happy! When we're out & about many people ask if we're sisters, and it's a hard one to answer because, "technically", we're not - but we so are at the same time. I've been blessed by her friendship since middle school (yep, she stuck around that long haha) and we've made so many great memories together since then - the kind that can't really make up one post on their own but they're still great. Like the time we went camping and had a whole tent to ourselves and stuck batteries up our noses. And the time we stood on the streetcorner dressed like clowns with a sign that read "Honk to be undignified for Jesus". Or the many dance parties that made up our middle school years. And the nicknames we gave each other of Cheesebubble and Granny Nun the Anti-Nazi. Or that one time with all of the fruit flies and Windex. And staying up late sneaking around the house and falling asleep to movies in the living room. And when we dressed up like Batman and Robin to play Fugitive. And went to that all-nighter scrapbooking party and managed to get whipped cream all over our faces. Or when we stayed up until midnight ratting our hair after having a super deep conversation. Cause that's just how you we end those sorts of nights. Or staying out until 1:00am after dancing to have another deep heart-to-heart while playing in giant leaf piles that we created. Also, the numerous occasions where we dressed up like guys . . . for no apparent reason at all. Actually, just all the times we dressed up. Period. Oh my gosh, and all of the videos we made. Like all the ones with the Waka-waka Wild Dog! And the Emilienoes. And when we tried to fly. And when we rubbed toothpaste all over our faces. And the one where she shoved my face into a bowl of Ramen. And lets not forget the vomiting incident: http://lifewithlew.weebly.com/1/post/2013/06/tbt-vomiting-laughter.html And the uncountable heart-to-heart conversations we've had over the years. Also, that one day fairly recently that we spent shopping and seeing how many different pairs of pants we could both fit in. Good times ^.^ I still remember meeting this girl. I could tell you exactly where I first saw/met her and what she was wearing, along with her body language and expression on her face. I can't say that about very many people . . . She's my spiritual warfare buddy, my heart-to-heart buddy, and my "me too!" buddy. And today, I helped her pack up her car to move to transfer to another school in another city. Though she won't be outrageously far away, and visits will happen, I'm gonna miss this girl. She really is a sister to me :) To the girl in the brown & pink Vans skate shoes, light-wash jeans, and light blue & brown & white puffy jacket: I love you dearly. Go kick nursing school in the pants, Cheesebubble! I . . . don't even know where to start. Life has been super crazy over the last month - for two weeks especially. I was beyond blessed to be a part of two dear friends weddings this Summer, both within 2 weeks of each other. The first one being 2 days after I got back from vacation. Here's the story in summary : I met this dude my "freshman" year and he quickly became my big brother (which is what I needed at the time). God had really laid him on my heart to be praying for him, and one of the things I prayed for him the most was that God would bless him (in His timing) with a crazy awesome young woman who was in love with Jesus, full of grace and forgiveness, kind, encouraging, would spur him on, seek God before all else, and speak Spanish (my big brother just happens to speak Spanish and has a great passion for the language and that which surrounds it). February 15th, 2012 A group of us were studying/chillin' at the library after an event, and (we'll call him MGH, short for Mi Gran Hermano, which is what I call him) MGH looked really nervous, so I texted and asked him what was wrong and he proceeded to tell me via Facebook chat how yesterday, Valentines Day, he had given this girl (we'll call her Juice) a letter expressing certain feelings that he had, and the next day they were going to talk about it. First response? He's my big bro, I'm his lil sis - I don't know this girl. So I made it my mission to get to know her to make sure she was okay for my big brother. I take my job as a younger sibling very seriously. And wouldn't you know it, she turned out to be everything that I prayed for my big bro and more. I was blessed enough to not only get to know her, but spend some wonderful time with her talking, crafting, and listening to old radio dramas. I was asked to be their flower girl and ring bearer, as well as one of the toast givers and assistor in some of the decor setup. What fun! My day started at 5:20am and ended when I got home at about 2:00am. One of my best buds came with me and not only rode in the car with me for a total of 5ish hours, but also did whatever needed to be done during the day as well. She's a trooper ^.^ It was a wonderful day. It was rather hot (especially all in black), but it was wonderful. My fear of tripping while walking down the aisle didn't occur, but I did manage to get one of the rings stuck in my pocket. The toast managed to go well as well - only fumbled once I think. Which is great, cause as much as I love words and putting them out there, public speaking - not my thing. But I've known what I would say at their wedding (and was secretly really hoping I would somehow be involved and be able to share) since they first started dating. Success! Alright, wedding #2. This was the wedding of a friend (we'll call him Hubert) I've known since elementary school, I believe, as well as another friend (we'll call her Amazing) who has grown very dear to me in the last 1 1/2 years that I've known her. And oh my goodness, their story is a great one, too! One that isn't mine to tell, however. It was a beautiful wedding. Amazing is such a creative person and she did an amazing job thinking up and creating all sorts of different things. Like our bouquets. Our bouquets were super awesome, handmade (by her and a few other helpers) wood and felt sunflowers. When she first told me she wanted us to carry sunflowers made out of felt, I was like, " . . . Huh". But oh golly, they were neat! I was asked to be a bridesmaid, and was able to do so alongside one of my besties, Madi, who was the maid-of-honor. One of the things I loved about this wedding is that it was such a symbol of healing, in many ways. One of which, and by far the most humorous for Madi and I, were the amount of exes that were involved. The maid-of-honor is the groom's ex, the photographer is the bride's ex, the wedding coordinator is one of the groomsmen's ex, and one of the bridesmaids is an ex of one of the groomsmen - both of which are younger siblings of the bride and groom. It was cool to have so much history apart of one wedding, and yet there was no drama or bitterness to be found - just support and joy. How cool is that? It was such a fun day to be apart of. From the rehearsal dinner and waltz practice (words can't express just how much fun and how entertaining it was to dance with my partner-in-crime groomsman. Seriously, I love that guy. We laughed way more and had more fun than anyone else did, I'm sure of it) where I ended up splitting my toe open, getting ready in the morning with the rest of the bridesmaids (who are all fabulous women), to taking pictures - both serious and ridiculous, to carrying those awesome giant sunflowers around and threatening people with them, to watching a beautiful ceremony that was so uniquely them, to dancing back down the aisle with my groomsman in crime and awesome friend, to being able to meet everyone who came to support the bride and groom on their big day through the receiving line, to dancing the first dance with them , to helping out with a mini dance lesson with someone I had only met that morning (which ended up being super fun), to photo moments, various dancing, and so. much. laughter. Another thing I absolutely loved was that all of the bridesmaids and groomsmen wore different colored Converse. So great! To end the string of festivities, Madi came over after the wedding and we hardcore relaxed after the crazy busyness of the past few weeks. We indulged ourselves with dinner, ice cream, sippy cups, my new (and possible all-time favorite) book, and FINALLY watched Sharknado 2: The Second One together. It was a lovely way to end the chaos. My brain is all sorts of scattered right now. I know there's probably important and memorable information that I wanted to portray to y'all that I missed, but it's taken me 1 1/2 weeks just to write that. This Summer was supposed to be boring. Not that I wanted it to be, I just had nothing going on, except for, of course, these two weddings. And then POOF! Wedding duties, ministries, dancing, people, lots of growth, traveling, and all sorts of other stuff happened. Super grateful for such a full, memorable Summer. And, hopefully, I'll be able to share a little more of what's been going on recently :) |
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