Movie night for Ricky

I want you to try and do something, that I'm going to tell you right now, is absolutely impossible. I want you to try and imagine starting to lose your sight and being blind by the time you were a first grader. I want you to try and picture yourself being athletic and strong, even taking a wrestling opponent out in 30 seconds because you accidentally gave them a bloody nose. You're strong, you're funny, you're like every other kid except you can't see. But on top of all of that, I want you to imagine living your life knowing everything you learn and accomplish, at some point, you will no longer be able to do.


 This is something I've tried to picture in my mind over the last month and it is impossible to do. A month ago, I met Ricky. Ricky is 18 years old, he's 5'9, doesn't like getting up early for school, loves rap, hip hop, and all sorts of other popular music, like his peers. He's an extreme movie fanatic and has an awesome sense of humor. He likes to talk about the ladies and loves Siri's weird responses. What I just described to you is a typical 18 year old boy. Except Ricky is now struggling to walk and has to use a wheel chair because he is losing his strength. Every time he meets someone new, he has to repeat himself, 5 or 6 times, hoping they will understand what he is trying to say because he is losing the muscles that control his lip movements. He loves M&Ms and eats them a lot, knowing that one day, in the too near future, he will not be able to eat because his muscles won't allow him to swallow. He will be blind, unable to walk, on a feeding tube, and have absolutely no movement or ability to communicate his wants or needs to anyone. He has Batten disease. Families typically find out this diagnosis when their children start losing their vision at a very young age.

Ricky baking with me!

When I met Ricky, I was shocked by the strength of this boy, physically and emotionally. He took my arm and still practiced walking everyday. He tells jokes, even though it takes us awhile to get them. He is such an amazing kid and everyday I've known him he's made me laugh. Knowing all of this about your life and still having the strength to even get up and go to school everyday is unbelievable. 

It may seem silly to some people but Ricky's always wanted to be a ticket-taker at a movie theater. Of course, my first job was a busser at a small little restaurant, so when you really think about your first job, for a movie buff, this would be pretty awesome. Ricky will never be able to have that job. But I wanted him to experience it, only if just one night. 

I figured there was no chance of anyone getting back to me, but I thought the least I could do is reach out to a movie theater to see if he could have that opportunity. Not only did the owner of Penn Cinema, Mr. Penn Ketchum, get back to me but on Monday, November 9th,  he is allowing Ricky to be a ticket-taker for the evening from 6:30-7:30. He is giving Ricky a uniform to get the full experience. Ricky was also so excited for the "Goosebumps" movie and Mr. Ketchum added in a special showing, at 7:45pm, so Ricky could watch it right after his "shift" is over. 

Not only am I truly amazed by Ricky and his entire family, who show such love and more strength on a daily basis than I can ever imagine, but am so happy to know there are people, even owners of huge businesses, that will go out of their way to do something kind for another person.  

I know this post may seem sad and depressing but honestly, when you truly think about it, it should make you look at your life in a more positive way. Ricky and his family have changed my life in the short month that I've known them. When I want to scream because my boyfriend doesn't understand the difference between holiday decorative towels and dish towels, I try to take a deep breath (even though as I'm writing this, I'm getting a little annoyed) and remember that there are people in this world that are experiencing much tougher times than I am. I have met the most inspirational, wonderful people this month and I am so thankful for that. Be happy, positive, and thankful for everything you have and do something nice for someone when you can. 

So with all that being said, if you live in the Lancaster area, come support Ricky and his dream of being a ticket-taker this Monday night at Penn Cinema. You can go see any movie  just as long as you go through Ricky's line and say hello! Remember to be patient with us, as it will be our first night on the job! :) Also, feel free to join us at the special showing of Goosebumps! Please support Penn Cinema for going out of their way to make this happen for Ricky! If you aren't in the Lancaster area, please still share this post to help support Batten Disease awareness. Thank you all so much! I hope to see you all Monday!!!!



                          For more information on Batten Disease visit www.bdsra.org 

Dirty, Dirty, Horrible 30

Okay...so it's been awhile since I have written anything. I guess I was just busy getting old. Usually when the month of May hits, I start the countdown to my birthday. My birthday...glitter and gifts and all my friends stopping their busy lives to make sure to celebrate accordingly! It is now August 18th and my birthday is....tomorrow. This year, I have been dreading this day. For months, I have thought about this single day with shortness of breath and a knot in my stomach.

Tomorrow I will be 30 years old. If anyone ends up reading this, I'm sure your first thought is one that would look good with a colorful background posted on an inspirational pinterest board. Most people laugh and say, "you're still so young," "30 is the new 20!" and my favorite, "really?? you don't look 30!" I absolutely never thought the day would come when I wouldn't have a large, crazy countdown to my birthday and the inevitable birthday party I plan every year. I love the chance to see everyone and of course, I love the gifts! Gift giving is definitely one of my top love languages. Which on a side note, I feel the need to defend. It is not shallow to feel loved when you get gifts...for all you "words of affirmationers" out there...why do you need constant praise and reassurance?? I rest my case.

Okay so let's get all the positives out of the way. Yes, I lost a ton of weight and am so much happier living a fairly normal, healthy life. I also recently graduated from grad school and now have my Master's. And most importantly, I met a wonderful man that loves me and all my glitter E crazy ways.   In October, I am going to be moving into a beautiful apartment with him and my pups. I have many amazing friends and family, who have all been wonderful and allowed me to cry about my elderlyness. But none of this really is about the actual age of 30...

At 30, I was going to be married with 2 adorable little ones and 1 on the way! I was going to be living a comfortable lifestyle with the job of my dreams and amazing credit (ha!). I would be helping children and families during the day and then coming home to my adorable, cozy, perfectly decorated home and family. This is the birthday that is making me evaluate my life and everything I have and have not done up until this point. 

At (almost) 30, I have learned that not everything gets wrapped up into a perfect little glitter E bow. In order to get the job of my dreams, I had to struggle through grad school and now I am at the awkward stage of looking for jobs, being unemployed, and having too much time to sit and think about what I wish my life looked like at 30. I have had the honor to be involved in the engagements and weddings (one soon to be!) of my 3 very best friends, as they marry the men of their dreams. My brother proposed to his girlfriend (overlooking all of London-ugh hate/love them) and we are going to be a welcoming another cute, blonde into the family. My sweet and loving boyfriend has made me feel more supported and loved than I ever have in my life and has brought some absolutely amazing new people into my life, including his sweet daughter Faith. So what is the problem?

Change. I hate it. Good or bad, I hate change. I am sure if (he hates when I say that) I ever get engaged, I will be so happy but I will also have a very hard time with it. Change and transition just throw my world upside down. I like routines and comfort and having a plan. The unknown terrifies me. With all the unknowns in my life right now, I am just not ready to have the change of leaving my 20s. Anyone who really knows me, knows I am a talker. There are many people who already know that I have been dreading my birthday this year, I am not skilled in holding in emotions. The best response I have had to my expression of anxiety over this birthday was hands down from my 10-year-old cousin, Anneliese.

She saw me crying, as I was stressing about everything in my life that was wrong for a 30 year old, and when she asked what was wrong...I told her I was being silly but I just didn't feel ready to turn 30, yet. She did not tell me I was crazy, she didn't tell me to stop and she just gave me a big hug. She then sat quietly (playing with my hair...my favorite thing in the world) for a moment and said to me, "You know this year I had a hard time turning 10. I was nervous about being in the double digits. I realized that never in my life will I only be 1 digit anymore." It was the most perfect, precious and honest response I could have asked for from anyone. I realized there are just some people out there like Anneliese and myself. It may not be rational or understood by the majority of people, but it is who we are. It takes us a little bit longer than everyone else to embrace something new, no matter how wonderful and exciting the change may eventually be. 

This post is not going to have a cute little wrap up about me embracing 30 and my knowledge that it will be the best year of my life...because quite frankly, I know nothing. I do not know how I will feel when I wake up tomorrow and realize I am 30 years old. I don't know if I will be happier after I receive gifts with inevitable glitter remnants that linger around for weeks. I have no idea if I would have been happier planning a huge 30th birthday party, instead of being mopey and telling everyone I wasn't going to celebrate this year. My life just happens to be in that weird awkward stage, just like my hair. You know, when you're trying to grow it out and you are so close to having long, pretty hair but currently it is in the unstylish "in-between" phase. I will just have to wait and see how things work out. Maybe my hairstylist, Sarah, will tell me I burnt the ends of my hair again and I will be forced into a new, cute, stylish haircut. Or maybe I will finally reach the point that my waiting and hard work pays off and I will get a job helping families and being one step closer to that life I've always wanted, with beautiful long hair, of course. 

I guess I just have to keep waiting...I will live through this dirty age of 30. Why do they call it that anyway? Dirty 30 is the perfect analogy for my birthday this year. I literally and metaphorically have some cleaning up to do. I HATE when things are dirty. I want that clean, pretty, gorgeous life. Maybe it is a good thing that I have this chance to take a good, hard look at my life and clean up some areas that I am not comfortable living in. Maybe it takes a random birthday to evaluate life and make changes for the better, even if those changes will make things messier before they get straightened. Maybe I will just keep making up metaphors and no one will understand this post that made so much sense to me at the time when I was 29. So in the last day of my 20s...through all the upcoming dirt, I happened upon a little bit of sparkle. And this my friends...is what I call a game-changer. 

Okay, so mayyyyybe I will be forced to acknowledge my 30th birthday because I found this adorable "Happy Birthday" headband at J. Crew Factory. I won a competition at work (competing with co-workers 5-10 years younger than me) and this was my prize. As you all know, if you read earlier in this post, I hate waiting. I couldn't possibly wait until 31 to wear this headband. I will never turn down an excuse to wear something glitter E in my hair. And...this is a headband for children, found in  "crewcuts" which still fits my head perfectly. So maybe, just maybe...I will be able to focus on this glitter E cuteness and see through the dirty of my 30. Guess I will find out soon enough! <3 E