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Guest Blogger: Alyssa and the Satellite

For the last two years, I have given my readers a firsthand look at the personal side of living with SMA, and, today, I’m happy to introduce my first guest blogger to share their own insights on this disease. Each guest blogger will have the opportunity to express their feelings on SMA and how it has affected their lives in order to give readers a fresh, and different, perspective. Guest blogs will be posted on the last Sunday of every month for the duration of this year.

Now, without further ado, meet my older brother, Adam Silva. Having Adam guest blog was extremely important to me because I want the world to know of this special bond he and I share and how, living with SMA, I couldn’t have asked for a more compassionate and loving brother. Through all the crazy curveballs this disease has thrown my way, Adam has always been there to see me through the toughest of times and keep me smiling. He is my rock. Adam is my protector and quite possibly the only person who knows me better than I know myself. And, just like the song he has referenced in this post, I’ll always be safe knowing he’s my satellite.

IMG_7704When Alyssa first asked me to make a guest appearance on her blog, I was a little apprehensive. She wanted me to write a post about being the sibling of a person with SMA, but how could I do that with just one blog post? I felt like there were innumerable subjects that I could write about. I could write about all the times that she was hospitalized as a child and how it taught me at such a young age how fragile life truly is and how much you need to cherish the moments you have with the people you love. I could write about all the times I saw her face adversity, and the hours she would spend writing the answers to a few math problems, needing to take a break every few minutes because her arm would get tired from all the writing, but never giving up. Going out in public and encountering people that didn’t understand her situation and as a result treated her like an infant or didn’t acknowledge her at all, but somehow always finding a way to politely show them that, in spite of her disability, she was just like everyone else. No matter what adversity has strayed across her path throughout her life, she has always been able to overcome it. Or maybe I could write about how much of an inspiration she is to all those people that are lucky enough to have her in their life. The way she faces each day with a smile on her face, never giving up and never letting anything bring her down, is nothing short of remarkable. I tossed these, and so many other, ideas around for days, fretting that I wouldn’t be able to decide on a subject for this post. Ultimately, the answer came to me in the most peculiar of ways.

It was late evening after a long day of work and I was driving home, looking forward to eating dinner and spending a few hours relaxing after such a strenuous day. As I drove, I was singing along at the top of my lungs (don’t laugh, you know you do the same when you’re driving alone in your car!) with a song by one of our favorite musicians, Andrew McMahon, when the subject came to me. The answer to the question I had been asking myself time and time again for the past few days was the most obvious answer of all. Every subject I had considered writing about ultimately summed up to the fact that, throughout our lives, Alyssa and I have developed an almost indescribable bond and that neither of us would be complete without the influence and support of the other.

I guess it really isn’t a coincidence that this idea came to me while listening to this particular song though. It’s a song that Andrew wrote about the birth of his first child and how much it has changed his life. The song is called “Cecilia and the Satellite” and though she may not know it, I’ve developed a strong connection between this song and my relationship with her dating back to November 9th of last year when she and I saw Andrew McMahon in concert in Boston.

IMG_1902Andrew McMahon has been one of Alyssa and my favorite artists for many years and we have been to see him in concert, at least, 6 times. The night was shaping up to be like all the others, full of laughing, dancing, and of course belting out every song that Andrew performed, when he began to play “Cecilia and the Satellite”. As he made his way through the first verse, Alyssa and I could be seen with our eyes glued on the stage and singing along with every word. It was then that made this night so memorable for me. Andrew arrived at the last line of the verse, “for all the places I have been, I’m no place without you”, when Alyssa and I both turned to look at each other, making eye contact, and singing the line. At the end of the line, Alyssa turned back to look at the stage and continued to sing along, but I kept my eyes on her a few moments longer. To this day, I still don’t know if she has ever realized what we had done in that moment, but it is something that I’ll remember for the rest of my life.

To describe the bond between us in one line could be no better stated than with that lyric. It was as if each of our subconscious selves recognized the connection between the next line of the song and the bond we have between us, the beauty of the moment as it all came together, and willed us to look the other’s way for those few moments, expressing so simply, yet so wonderfully, how much we have meant to each other’s lives. Andrew may have been singing about the bond that he feels with his newly born daughter, but those feelings can just as easily describe the relationship between life-long friends, husband and wife, or brother and sister.

Over the course of our lives, Alyssa and I have been through enough hardships to last a lifetime. There have been nights where one of us has gone to sleep not knowing if the other will still be alive in the morning. Not knowing if the events that have occurred have changed our lives forever. Not knowing how we will find the strength to face the next day. It is those times that the bond we share presents itself the most and is most obvious to the people around us. We have always known exactly what to say and exactly what to do to help each other through whatever it is we are facing. We have always known how to bring a smile to the other’s face even as the tears are falling down. To pick each other up and help each other through the storm. Through the love and support between us, we have always found a way.

Of course our lives haven’t been all hardships and pain. Most of the time Alyssa and I have a relatively normal brother, sister relationship. Some of the happiest memories of my life have occurred with her by my side. She has been and always will be my best friend. About a year ago, I proposed to my beautiful fiancé, Krystina, and asked Alyssa to be my best man. I know it is unconventional, but let’s be honest, there isn’t much about our relationship that is. I look forward to the day that I will be married to Krystina and will be honored to have Alyssa by my side, and though getting married will be the beginning of a new and wonderful journey with Krystina, that doesn’t mean that as I continue my journey through life, it won’t be without you Alyssa. For all the places I have been and all the places I will go, I’m no place without you.

 

Andrew McMahon in the Wilderness- “Cecilia and the Satellite”:

http://www.youtube.com/watch?v=G_zY_jSVXSU

International Day of Acceptance

Happiness begins the moment you learn to embrace who you are and accept all that you have to offer no matter how different you may look, seem, or feel. It begins when you choose to look past the unrealistic standards and stigmas that exist in today’s world and move forward with knowledge that you are just as deserving as the person next to you. The happiest of people wholeheartedly embrace their diversities. They learn to love their lives and empower those around them to do just the same. They are also accepting of everyone else’s diversities. The most diverse people may have the greatest stories to tell, and the greatest stories told are the ones that live forever.

Today, January 20th, is international day of acceptance. This day is about breaking down the stereotypes that exist in today’s society and learning to be accepting of everyone’s paths of whom you cross. My disability does not want you to judge, poke fun at, or criticize. It does not want you to hate. My disability does, however, want you to be accepting and open to embrace the many diversities of life. My disability is my great story, and I hope to tell it to the world.
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Ringing in the New Year

I can remember at the end of last year, looking back and thinking about all of the incredible memories I would carry with me into 2014. That year, 2013, was special, and because it was so special, I was anxious about leaving it behind. January 1st technically is just another day, but I always used to experience these weird, unsettling feelings about new years in the past. I’d read articles upon articles that reflected on the year’s best moments, then think about how the current year was my best year yet and would hesitantly ring in the new year with a glass of champagne to mask my doubt. However, in my brief bouts of paranoia and anxiousness over the years, I failed to recognize that the best and most exciting part of a new year is the opportunity for growth that lies ahead. It’s the opportunity to become a better version of yourself, to learn, to dream, and to write the next 365 pages exactly how you choose to.

The past year has taught me that, if I pay close attention, I will learn a valuable lesson in each experience I face. 2014 has helped shape me into a stronger and more confident person than I ever have been and, looking back now, I realize it’s because of how I lived each moment. The moments of pain and struggle, I learned, were just blessings in disguise or temporary obstacles to prepare myself for something greater. It is these moments that will shake you to the core and make you question every little aspect you thought about life, until you finally find the answers and the strength to move forward with a new found respect and hope for yourself as a worthy individual.

And then, there are those times, those beautifully remarkable times that leave you feeling like the luckiest woman in the world. As you live and breathe these moments right before your eyes, you get these crazy rushes of emotions while trying to make sense of it all because it’s almost too good to be true. And, in these moments, no matter how minuscule or how great they may actually be, you learn to become grateful and humble, and those feelings will become embedded in your soul for the rest of time. I am beyond blessed to say that this past year was full of moments like these.

2014, thank you for opening the door to so many unbelievable opportunities that will come to fruition in the upcoming year and for always surrounding me with a remarkable group of friends and family. Thank you for the experiences that showed me to search deep inside my soul in order to discover my self-worth and the confidence that had been buried under so much doubt. It’s been an amazing ride, and I have a good feeling 2015 is going to be just as good.

 

To my readers: thank you for showing so much love and support on my blog over the last year. Your comments and emails are so heartwarming, and I cannot wait to hear from you in the year ahead. May your 2015 be filled with happiness, health, and peace.

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New Beginnings and Bigger Dreams

When I was a little girl, my friends and I would have lemonade stands to raise money for Spinal Muscular Atrophy. I had always dreamed of raising $100 for this cause, but I guess I figured selling lemonade at 50 cents a cup wasn’t the most lucrative option. So, with a goal in mind and an incredible support system by my side, I decided to branch out and explore other ventures, and almost two decades later, over $100,000 has been donated to SMA research. My efforts have all been done under the name, “Working On Walking”, and, today, I am super excited to say we have officially applied for nonprofit status with the IRS in hopes of becoming an official nonprofit organization. Here’s to new beginnings, bigger dreams, and the people who have helped me come this far! I can’t imagine my life without you.

(Special thanks to the remarkably talented Ray Oleaga for working with me to create this beautiful logo!)

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Thank You

As I get ready to spend another Thanksgiving with my family, I must take a minute to reflect on my life and all the blessings I’ve received. When I decided to spread my story two years ago, I never imagined I would be where I am today. I guess that’s just how life works. You never know where your journey will take you, and there’s something quite thrilling about the idea of that. Today, I count my lucky stars for every person, every experience, and every hardship I’ve faced, for they have taught me a valuable lesson and uncovered a truth in life that I had yet to discover. These moments and these people have helped shape me into the person I want to be, and I am unbelievably and eternally grateful for that. Thank you for making my life so remarkable. Happy Thanksgiving.

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Curiosity Never Killed the Cat

There was this time, a few years back now, when two of my friends and I went out for ice cream. Just like any other summer night in a small town, the place was packed, so I told them I’d go park myself at a picnic table before anyone else grabbed it. On my way over to the table, I saw a little girl crying, no, actually she was wailing, in her mother’s arms. To my surprise, just as I was approaching the table which, unfortunately, was right next to this less than cheerful little girl, she screamed, “Mommy! Ugly!” and pointed…Right. At. Me. And, just like that, they quickly gathered their belongings and headed straight for their car.

I couldn’t believe it. There I was, minding my own business and anxiously awaiting my delicious milkshake that was swirling in the blender, and this kid just blurted out “ugly” in the midst of her hysterics. But, the part that hit me the hardest, was not her reaction. It was the reaction of her parents. Although this situation was a bit extreme and only happened once (kids don’t always say the truth, right?), I’ve always dealt with incessant stares and inquisitive children whose parents don’t always handle these encounters appropriately. It’s time we change that.

Let’s begin by pointing out the obvious. I’m different and look different, in which case I find it completely normal that a child gets curious. In fact, I believe their curiosity is a great thing because without being curious and never asking, they’ll never know. With that being said, when a parent hurries their child along when they say something along the lines of “why is she like that?”, nothing good will come from it because nothing will be solved. Unanswered questions can often lead to misconceptions, and that’s where we fall into problems. On the contrary to people’s beliefs and silly metaphors, curiosity never actually killed the cat.

Although there are people who, one might argue, don’t handle these types of situations well, there ARE people who know exactly what to say to their little ones and, over the years I, too, have learned the appropriate way to handle when children ask their questions. If you ever find yourself in a situation aforementioned, here are a few helpful hints to remember.

1) If you see us interacting and conversing with our peers out in public, chances are we will be happy to answer your child’s questions. I’m happy to give the “little kid version” of my disability which is that my legs don’t work, and I have to use this pretty cool chair to get around. I’ve learned that it works really well, and there’s a great possibility that the child will then begin focusing on my chair and not so much on me.

2) Sometimes, a child may say something directed towards a disabled person that embarrasses a parent, but it’s important to not act irrationally. For example, “why does she look like that?” or “why is she so little?” or, my least favorite, “ugly” are just a few phrases I’ve heard in the past. Instead of getting upset, take a quick second to answer your child. Even if you do not know the person’s story, a simple “that’s how she was born” will suffice. Going back to the first tip above, if your child continues to ask questions, why not approach us and ask? I promise we don’t bite.

3) Kids lead by example, so be aware of your actions. Negative reactions will ultimately result in negative outcomes. However, being responsive in a positive manner will teach children that it’s okay to be interested in these types of matters. Encouraging children to ask questions will eventually teach them to be more accepting and less prejudiced towards people with disabilities.

4) Remember that, on the inside, we are just like everyone else! Ask questions, and don’t be afraid to tell us what’s on their minds. Asking us questions is just like having small talk with the person waiting behind you in line. We will share what we want to share in hopes of enlightening your child. Most of us want to help in better educating the world about disability and the fact that our disabilities don’t define who we are at our core.

I was once out to lunch when a mother approached me with her son. She said, “My son has been asking me all sorts of questions about you, and I told him he can ask you personally. Do you mind?” I was ECSTATIC. Even though the boy quickly became quiet and shy, I was able to give a little bit of insight on my disability, and it felt so good. Just a few minutes of my time and his questions were answered. That’s one less child who will be feeling perplexed the next time a four-wheeled machine whizzes by him out in public. I can only hope more people will do the same in the future to help change the way disabilities are viewed in a child’s eyes.

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Something about Summer

With the days falling shorter and the leaves changing color, I can feel the last bit of summer sunshine slowly fading into autumn. It seems like yesterday I was packing my bags for Washington DC to kick off my summer, and now here I am, replaying these last few months over and over in my mind, wishing I could relive each moment and savor them for just a little while longer. There’s always going to be that one summer that’s stamped our lives in some way, the kind of summer that changes us for the better. This summer has done just that for me.

The summer began with the launch of my Dare to be Remarkable documentary project. What I thought was just the beginning of my next endeavor in generating SMA awareness turned out to be something greater. It was the beginning of the most remarkable journey I have ever embarked on to date. In June, I traveled to Washington, D.C. to advocate for SMA and along the way met some incredible people who have been affected by this disease. These people and their heartbreakingly touching stories taught me the true meaning of fearlessness and ignited a spark in my bones to continue to grow and thrive. I came home from that trip with a newfound perspective of life and the gusto to want to support and help SMA families across the globe. I felt it more than ever.

Summer of 2014 was filled with great friends, old and new, beach trips, and so much more. With the help of an amazing committee and 450 incredible guests, I donated $28,000 to Cure SMA from our 5th annual fundraiser. This led me to officially surpass my goal of wanting to raise $100,000 for SMA. I toured the Alex and Ani headquarters here in Rhode Island and was given the opportunity to be a guest blogger for them during SMA awareness month. Alex and Ani is primarily focused on spreading love and positive energy through their products, and actually seeing that firsthand really inspired me to try and live by the same beliefs.

To top off a perfect summer, I spent a Friday night with the New England Patriots during a preseason game at Gillette Stadium. I cannot begin to express the kindness and warmth that radiates from the entire Patriots organization, and I will forever be indebted to Stacey James, Robert Kraft, and all the other members of the organization for giving me and my family the opportunity of a lifetime. I never imagined, after all these years of sitting on my couch watching from in front of a TV screen, that one day I’d be on the sidelines spending time with Robert Kraft, Andre Tippett, and even Vince Wilfork (my new puppy’s namesake). That night was more than I deserved, and I learned that the Patriots are just as remarkable off the field as they are on the field.

As most things in life usually go, with great joy comes great sorrow. Losing my service dog, Fred, at the very end of summer was (and still is) one of the most difficult experiences I have ever faced. Moving forward without him by my side has been heart wrenching, to say the least, but, with every ending we try and look forward to new beginnings. The goodness exemplified by the people I met this summer encourages and drives me to continue to work towards being the best version of myself as I can possibly be. There are still so many opportunities and plans on my horizon, and I cannot wait to share my journey with each and every one of you. Here’s to a new season and embracing the changes with every leaf that turns to gold.

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