During one of my typical (usually daily) pinning sessions on Pinterest, I came across this quote in the picture above. It really got me thinking, and on this chilly Thanksgiving morning, I figured I would share with you all what I am most thankful for. I’m sure I could literally go on forever if I wanted to, but I’ll try and keep it as concise as possible. Hope everyone has a wonderful day filled with turkey, loved ones, and full bellies.
I am thankful for my family and the undying love and support they’ve given me throughout the years. I am thankful for the friends who have filled my life with laughter and many unforgettable memories that will be cherished for eternity. I am thankful for my service dog, Fred, who also happens to be my very best friend. I am thankful for having the opportunity to receive an education from a reputable university, one in which has given me some of the best days of my life. I am thankful for Netflix. Seriously. Does that make me seem a little weird? I am thankful for nurses, not just mine, but for every nurse who is improving the quality of life for their patients. I am thankful for my past, for it led me to this very moment and some pretty amazing experiences along the way. I am thankful for the bad times because they all have helped me to grow and learn for the better. I am thankful for cupcakes. Especially the red velvet ones. I am thankful for everyone who helped in getting the RI statehouse dome lit green this past August. That was one of my favorite moments ever. I am thankful for being blessed with a wonderful and hardworking dream team to help me plan the annual SMA fundraiser. I am thankful for my accomplishments small and large. I am thankful for having the incredible, never-in-my-wildest-dreams opportunity to blog for The Huffington Post at my discretion. I am thankful for my blog viewers across the world and their comments/emails that make my day. They motivate me to keep writing and sharing my story. Last but not least, I am thankful for this amazingly, beautiful life.
What are you thankful for? Happy Thanksgiving!
In one of my previous posts, “For My Brother“, I wrote about the extraordinary relationship my brother and I share. Adam is 25 years old and has always been the best big brother a little sister could ever hope for. He’s caring, compassionate, funny, smart, and (I can’t leave this one out) a little annoying…all qualities that every great brother has. But, aside from all of these qualities, Adam and I have this unexplainable bond that only the two of us will ever understand. It’s something special, something treasurable; and, for that, I know I’m the luckiest girl in the world.
Back in October, Adam proposed to his girlfriend in Disney, making this past month a very exciting time for all of us. Her name is Krystina; and let me tell you I am so excited to finally have a sister! Just this past weekend, a date was set and a venue was picked, which means all the fun in wedding planning has officially begun.
As most traditional weddings usually pan out, the sister of the groom gets to be a bridesmaid in the wedding party. However, Adam decided to take a slightly different route. Last night, Adam surprised me with this video below. As soon as it started playing, I knew immediately Adam was asking me to be his best man, and I got a little teary-eyed. Okay, confession, I started bawling. This video montage really embodies the close relationship Adam and I share, and it even includes some scenes of our favorite shows and movies. As most of us know, Adam is great at making videos, but this one really takes the cake. Although it is a little unorthodox to have a woman as the best man, I couldn’t be more thrilled to take on this role.
There’s nothing more powerful, more endearing, and more perfect than a bond between a brother and a sister. I can’t help but realize how blessed I’ve been these last twenty-three years to have an older brother like Adam. Ever since day one, Adam has been my confidante, my protector, and above all, my best friend. He has stood by me through whatever curveball life has thrown my way and has never stopped believing in me. Being asked to be his best man is such an honor; an unbelievable honor. And, there’s absolutely no place I’d rather be than right by my big brother’s side as he marries his soul mate on May 30, 2015. Thanks Adam!!
Being confined to a wheelchair my entire life has definitely opened the door to many unwanted (and embarrassing, I might add) awkward situations. However, despite the level of awkwardness, those times have eventually given me a good laugh in one way or another. Well, usually. If one thing is for sure, it’s that these awkward moments have left me with some pretty great stories to tell. With that said, below are five awkward situations only people in wheelchairs face based on my past experiences. You ready?
This has got to be one of the most awkward situations when you’re meeting someone for the first time. It’s bad enough that the other person reaches out to shake our hands not knowing we can’t reciprocate, but sometimes the way in which we react to the gesture can be even worse. Typically, when I find myself in this unfortunate event, I completely freeze and my immediate response is always “I, uh, hmm, um”. And, if I don’t babble anything initially, I usually just blankly stare until my nervousness subsides and I’m able to formulate words. I’ll never forget this one time I went to visit my brother at college and how awkward it was the first time I met his friend. His hand was positioned in front of me waiting to be shaken, but due to the awkwardness and my lack of response, he hesitantly pulled away and, instead, gave me a couple of pats on the head. Moral of the story? If you’re unsure about how the other party will handle a handshake, a simple head nod will surely suffice and is just as polite.
2. Running over someone’s foot
Okay, so nobody’s perfect, right? Although some of us may have been operating our wheelchairs for decades, there’s always the occasional slightly-embarrassing-and-super-awkward moment when you run over a stranger’s foot. Yes, it has happened to the best of us, but in our defense, it can be extremely difficult to maneuver our chairs through certain areas. Take concerts, for example. Driving through a crowd of people and doing your best to avoid their feet is pretty stressful, especially when these people haven’t a clue you’re there. We do our best to stay away, but sometimes we can’t escape the inevitable. With that said, it’s important to never take offense if someone in a wheelchair accidentally runs you over. Although, there are always those times when “accidentally” running someone over comes in handy (anyone with an older brother would understand). Oh, and whatever you do, please don’t respond to the person’s apology with a joke like, “it’s okay! I have nine other toes!” That hits us deep.
3. A dead wheelchair
It’s a known fact that every now and then we can all be a little forgetful which may lead to some pretty awkward situations. Let’s face it, we’ve all been there. For us wheelchair users though, forgetting to charge our chairs is the ultimate really awkward situation, especially when we’re out in public. Who knows what I’m talking about? Typically, whenever I forget to give my chair a little juice, it’s always on a day full of errands and appointments. And if not, it’s on a day where I have misjudged the amount of battery I have left and only realize this once I’m an hour away from home. Maybe it’s me, but I’m pretty sure that’s just how life works. In the event of a wheelchair dying, there are two alternative options to choose from: call and ask someone to bring the charger, or ask one of your friends to push you back to the car. Either one is pretty embarrassing and almost always brings unnecessary attention to yourself. Although, it is pretty comical to watch your friends struggle as they manually push your wheelchair through the hustle and bustle of a busy area (been there, done that)!
4. Getting stranded
For many of us, having a wheelchair also means having a wheelchair accessible van. But, what happens when your van breaks down? Better yet, what happens when your van breaks down and you’re far away from home? Awkward! It’s easy to have a friend pick you up, but 9 out of 10 times that friend won’t have a wheelchair accessible van parked in their garage. Accessible taxis are always an option, but if you’re not in a major city, they are pretty tough to come by. Instead, you’re forced to come up with some logical and clever solution of getting your chair home and your van to the shop. All aboard the awkward train!
5. Elevator is broken. Please take the stairs.
We’ve all seen that dreaded sign at some point in our lives. Need I say more?
They say only a few friends come and don’t go; and, as I’m getting older, I’m beginning to see a lot of truth behind that statement. I firmly believe that every person who comes into your life serves some purpose, even if they don’t stay in your life forever. But, the people that do stay, those are the few people whom you hold a special place in your heart for, regardless of where life’s journey leads. Below is a speech I gave at my good friend’s retirement party a few months back. She may be living a thousand miles away in Florida now, but she will forever and always be my true north.
When I was nine years old, I had the pleasure of meeting Marie, my occupational therapist, for the very first time. Being a young girl, therapy was always my least favorite part of the day, but there was something different every time Marie came to my house. She was lively, energetic, and really knew how to put a smile on my face. To everyone that knows how Marie acts, this probably doesn’t come as a shocker to you. If anyone is going to be the one to brighten up your day, it’s going to be Marie. And, although I didn’t realize it then, Marie was going to become a lifelong friend that would change my life forever.
After our first year together, I gave Marie a homemade thank you card to tell her how much I appreciated her services and friendship. Impressed by my artistic skills, she suggested I start designing and selling my own greeting cards to raise money for SMA. Although I was hesitant to the idea, I decided to give it a whirl. I took Marie’s advice and believed in the confidence she had for me, and the rest pretty much became history. I ended up going down the greeting cards and calendars route for 7 years, raising around 50,000 dollars for research on my disease. It was then when I discovered my passion for fundraising, and, through different fundraising efforts, I have presently raised around 95,000 dollars. It’s amazing to think that one little thank you note to a special woman opened up the door to my future of fundraising for SMA. Looking back, I really owe it all to her.
Marie, thank you so much for always believing in me. You have always given me the courage to have faith in myself, and look where it has taken me. My life just wouldn’t be the same had we never met. Thank you for your guidance, your friendship, your support, your weekly maple frosted donuts, and most importantly, your love. I know you’ve said I’ve changed your life, but you’ve honestly changed mine even more. I’m so glad our lives crossed paths, and that we’ve become such close friends. No matter where life takes me, I will always keep you in my heart and will never forget all of the crazy, wonderful times we’ve had together.
Now that you have headed south to settle in your new home, just remember that you will forever remain my true north. No one will ever share a bond like the two of us have, and I can’t quite say enough how lucky I am to have someone like you in my life. Love you to the moon and back.”
On Monday, Disney announced that they would be changing their theme park policy for guests who have disabilities. The reason for this sudden change came from recent events that occurred last spring from families who thought of quite the clever way to cheat the system. Prior to a Disney vacation, families would hire disabled “tour guides” to accompany them on their trip, which would allow their kids to cut the lines to all of the rides. In other words, people who are fully capable of standing in line waiting to get on a ride were taking complete advantage of Disney’s guest assistance policy.
If there’s one thing that people know for sure about me, it’s that’s I’m a HUGE Disney fan. I’ve visited Walt Disney World twelve times (maybe even more, I’ve lost track), with each visit being better than the last. I mean, where else can you travel to 11 countries in one day and meet your favorite Disney princess? But, before you begin to judge me based on the amount of times I’ve visited the mouse, allow me to explain myself. Being in a wheelchair, traveling hasn’t always been smooth sailing. I’ve been stranded in Chicago at 1am without a handicapped taxi in sight, my wheelchair battery blew a fuse in Portugal leaving me without a way to get around “independently” for 5 of the 12 days I was there, and I can’t tell you how many times some contraption on my chair has broken while I’m away. However, in Disney, I’ve always felt a sense of comfort knowing how accessible the grounds actually are. As soon as I’m off the jet there’s a handicapped accessible bus, the Magical Express to be exact, waiting to take its passengers to their handicapped-friendly Disney resorts. And, at these resorts are fully-accessible buses transporting you to the park of your choice.
Once you enter the park on your first day, receiving a special pass is entirely stress-free. You head over to guest assistance, explain your situation (ie., you’re in a wheelchair or have special medical needs), and the cast member (a fancy term for a Disney worker) hands you a pass that allows up to 6 people to enter the ride from a different entrance. However, with the new rules that will take place on October 9th, disabled guests will basically receive what’s known as a “fast pass”, where they will have to return to a ride at a designated time as indicated on their pass. While I feel as though Disney should definitely take action to prevent those abusing the system, I believe this new plan of action isn’t exactly realistic when considering the different needs of the guests that enter these parks on a daily basis.
Don’t get me wrong, I’ve witnessed plenty of people who are clearly in no need of a guest assistance pass, and it irritates me to no end. During my most recent visit, I can remember waiting in line inside of Spaceship Earth with twenty wheelchairs and/or scooters ahead of me. I watched as each person parked their chairs up against the wall, got up on their own, and casually walked onto to the ride without a problem. When it was my turn, I had my brother rushing to pick me up out of my chair and carry me onto the ride, my mother spotting him in case he fell, and my dad pushing my wheelchair off to the side. At that point, I wasn’t really sure how I could make my disability more obvious.
Having that guest assistance pass wasn’t just meant for cutting the lines. In a situation like mine, I tire out easily. I don’t have the stamina of an average person and usually last about 2-3 hours in the park, especially in the Florida heat. I wear a plastic body brace that not only causes me to overheat rather quickly, but also causes me to have severe back and neck pains as the day progresses. And, unlike your typical park goer, I don’t have the energy to continually hop from ride to ride or park to park at a normal pace. That guest assistance pass, however, helped me to get on as many rides as possible without waiting in line, and ultimately saving my energy to see other things. But at the same time, even with that guest assistance pass, I only average about 4-5 rides per day due to my health limitations.
Thousands of people enter Disney each day, and I’m sure many of these people are in similar situations like mine. When thinking about these types of guests and the new Disney policy, it’s hard to see where the fairness lies. Because of certain people abusing what Disney was so accommodating of, people like us now have to suffer. Yes, this new policy will definitely push away the guests who were just looking for a quick and easy way to ride Splash Mountain twice, but it will also push away the people who need this accommodation the most. With its large fan base, Disney has been a reputable empire for years, and one can only hope they will reconsider the changes on this new disability policy.
The beginning of school always brings back a total mix of emotions. The feelings of excitement, nervousness, and anticipation all come swarming back to you as you get ready to tackle another year, dreaming about the day when school would become a thing of the past. But, when that day finally comes, you suddenly feel a little part of you is missing. The end of August no longer signifies the end of summer, you’re not feeling those dreaded first-day-of-school jitters, and buying school supplies just aren’t necessary anymore. Being a recent postgrad, not heading back to school a few weeks ago surely didn’t feel right. The thought of the real world kicked into high gear, and I realized just how much I was going to miss school, Bryant University especially. Don’t get me wrong, I’m so happy that I’ll no longer have to cram for exams, write papers well into the night, and stress about getting good grades. However, I made some of the greatest of memories there, which certainly triumphs those unpleasant college experiences any day.
As a sort of last minute thing, I had the pleasure of returning to my alma mater for the day on Wednesday. I was asked to participate in a Teen Vogue Back-To-School Saturday Trunk Show hosted by Her Campus Bryant, an organization I was a member of during my undergraduate years. They are part of the nationally recognized Her Campus organization, an online magazine that is dedicated towards college women. My role in HC Bryant was to manage our social media accounts, as well as write some articles here and there. I hated having to leave such an amazing group of girls, but was so excited when they invited me back to help out for the day.
At the trunk show, Her Campus Bryant was giving away a ton of free girly goodies by great brands including Pac San, Maybelline, Jimmy Choo, and so many more. As for me, my job for the day was to hop on their social media accounts and document the day’s festivities through tweets and Instagram pictures. Can you say best job ever? I’ve always loved social media and all the possibilities that can come from it, so as you might assume, I had a blast doing this. Plus, I’m so in love with everything fashion related. Besides helping out the girls, I had the opportunity to catch up with a few professors, say hello to some of the faculty, and take in the life of a college student from a different perspective.
I’m no longer that girl rushing from class to class and meeting to meeting, anxiously awaiting for that moment to myself. Instead, I’m searching for a job that will be a perfect fit for me, wishing I was back to those hectic days of college. Being at Bryant on Wednesday, I found myself really taking in everything around me now that I’m not a stressed out student, but a visitor. As I watched people head to class or sneak in some last-minute studying, I wondered where all the time went for me and how often I stopped to appreciate the little moments when I was in college. It’s funny how different things can look from the outside.
College goes by so quickly, and when you’re caught up in everyday life, it’s easy to lose sight of how lucky you are to have this opportunity. Revisiting campus quickly reminded me that the Bryant experience was more than just the diploma you received at the end of 4 years. It was about learning about the world around you, immersing yourself into different organizations and cultures like Her Campus Bryant, and, most importantly, figuring out who you really are. People will fade away and bad grades will eventually be forgotten, but you’ll always remember how college changed your life for the better.
For the past few years, I have always wanted to attend a Patriots game at Gillette Stadium. Being from New England, I had attended the Bruins, Celtics, and Red Sox games, but had yet to cross the Patriots off my bucket list. For one reason or another, whether it was due to illness or “selling out”, I was never able to purchase tickets. We all know it’s tough to score NFL tickets before they sell out, but when you’re restricted to only a limited amount of wheelchair accessible seats, it’s nearly impossible. Each time my dad and brother would go without me, I’d enviously sit back and watch the ritual of the preparation for tailgating, the excitement of the forthcoming game, and the camaraderie between father and son. However, everything changed this past Thursday night when I finally had the opportunity to experience my very first Patriots game. And, unlike the usual “nosebleed” seats my father and brother can only usually attain, my seats were much different.
A few weeks prior to the game, my father and I had attended the last Patriots Training Camp of the season. It was the closest I had ever been to a game, and I loved every second of it. Between the energy, the crowd, and the sport, I could only imagine how exciting it would be to attend an actual game. After practice was over, my father approached a man asking if there were any accessible tickets available for a game early in the year, before the cold and flu season begins. He introduced himself as Stacey James, and he immediately took interest in my disease and how I cope and live my life. He went on to say he would do his best to see if anything was available. To my surprise, Mr. James called me just hours later with an offer I just couldn’t pass up.
My first game day experience would be much different than a conventional night at a football stadium. Mr. James was unable to get me tickets, but instead invited my father and me to the press box to watch the Patriots in their last preseason game. On the day of the game, he made sure we had a VIP parking placard, 2 media passes waiting for us inside, and a perfect view of the field. Just when I thought it couldn’t get any better, during this first quarter, Mr. James found an empty private box and offered the space for us to use. From there, my father and I watched the Patriots compete against the Giants in the luxury of our own private room as I got a firsthand look at America’s most beloved sport.
Everything about the evening my father and I shared was incredible. I never imagined spending my first New England Patriots game the way I did, and it was surely something I’ll never forget. I couldn’t help but feel like a celebrity with the way the staff treated me, and I almost felt unworthy of what I was given. I was truly impressed by the personnel while I was there which led me to realize just how classy the New England Patriots organization is. The professionalism in the players that we see out on the field is also instilled in the entire organization, as was evident in the way I was treated. The perfection of the evening culminated with the Patriots beating the Giants with a score of 28-20.
Living with Spinal Muscular Atrophy can be really tough at times, but there are these incredible moments like this one that fuel me to keep moving forward. One of the positive aspects of living with a disease is that you get to see the best in human nature and kindness. I found out a few days after training camp that Mr. James is Vice President of Media Relations for the Patriots. He owed me nothing. I did nothing to deserve his kindness, but he took the time to make one of my dreams a reality. Moreover, he went way beyond my expectations for my first Patriots game. I will never forget it. As the season begins on September 8th, my parents, my brother, my friends, and I will gather in my living room to eat chilli, snack on food, and watch the Patriots play against the Bills. And although it will be fun, I will always have that preseason game experience in the back of my mind.
So, to everyone at the New England Patriots organization and especially Mr. Stacey James, thank you for all you did to give me a magical night.