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.
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.
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.
Today, I woke up with heaviness in my heart and a piercing headache from crying myself to sleep. This was the day I’ve been dreading the last couple of months, the day I would lose a part of me forever. I was prepared. I knew the reality of the situation, but I guess you could say I wasn’t ready to accept it. The selfish side of me would probably say I would never be ready to accept it. He was my best friend, the one being that gave me unconditional love at every hour of the day, expecting nothing in return, but, he was suffering too much to keep him going any longer. Today, I lost my beloved service dog, Fred.
Fred was one of the greatest gifts a girl could ever ask for, and I feel forever indebted to Canine Assistants and all of Fred’s trainers in Georgia. They have given me the best years of my life by giving me my Freddy. I can remember going to the Canine Assistants training camp thinking I was going to get this really cool dog that can turn on lights, and open doors, and even make the bed. What I came home with was so much more. Anyone who was lucky enough to have met Fred knows just how extraordinary he was. Sure, he’d have his moments where he’d bury the TV remote in the snow, or eat your roast beef sandwich as soon as you turned your back, or even chew on a twenty dollar bill. But, there was something special about Fred. We shared this love, this unexplainable love for each other that probably doesn’t even exist in many human-to-human interactions. Fred was my everything, and I was his everything, and, together, we formed an inseparable bond.
But, just like how all great and wonderful things end, the day had to come where Fred had to cross the rainbow bridge. It was heart-wrenching to see my boy deteriorate the way he did because, like most dog owners can probably attest to, he didn’t deserve to suffer. He didn’t deserve to go deaf, he didn’t deserve to get cloudy eyes, and he most definitely didn’t deserve to nearly lose his ability to walk. Despite his struggle in his last few weeks of life, he continued to show his loyalty to me which broke my heart even more. No matter the pain Fred was feeling, he always put my life first until the very end. As I cried my way into my room after giving Fred one more kiss this morning, he still managed to stumble across the house to give me one last goodbye.
The house seems quieter, and there’s a feeling of emptiness inside of me as I lay on the couch knowing he’s no longer with us. I already miss that sandpaper-like tongue of his, the way he’d lick my face as if he couldn’t love me more. That was the last moment we shared together. I miss the sound of his paws clicking on the floor and how he would follow me around the house, always making sure I was being taken care of. I miss his selflessness and unconditional love. I miss him so much. Tonight, I’ll go to bed wishing he was still sleeping next to me on the floor, but I’ll find comfort in knowing he’s no longer in pain. It seems impossible to imagine a world without Fred, but the memory of him will never fade. He has had my heart for 12 years, and he’ll have it for an infinity more. I love you always and forever, my Freddy boy.
If I could relive this night over and over again I would. Thank you for daring to be remarkable and helping to make a difference in the SMA community. Here are a few of my favorite pictures from the 5th Annual Working On Walking Fundraiser.
Louisquisset Golf Course in North Providence, RI
Don’t drop her!!
Greeting the golfers as they roll by!
We have SMA, SMA doesn’t have us.
Do you think we’re pretty?
Before 450 remarkable guests arrived.
Evan, who has SMA type II, and his parents.
The honorable Congressman Langevin and I.
After meeting in Washington DC, Congressman Cicilline has been a huge supporter of SMA.
Nineteen years of best friendship and counting.
So great having one of my best friends by my side.
My brother has always been quite the ladies’ man…
My good friend, Stacey James, and I. Honored to have him as my guest.
VP and P of Working On Walking! Stay tuned.
It is currently way past midnight, and after a fifteen-hour day of nonstop action, I should probably be well into my REM cycle right now. However, before I head to bed, there’s something I must share with you first. Today was one of those days that I’ll never ever forget, and it is all because of the incredible kindness that came from so many incredible people. Today, 450 people gathered to join the fight in finding a cure for Spinal Muscular Atrophy at our 5th annual Working On Walking fundraiser, and I had never been more overwhelmed with gratitude. As I looked around the room, I reflected on the previous years’ events and how far my committee and I have come in just four years. To think that we started this fundraiser with just a little over one hundred guests, and then there we were tonight, sharing a beautiful evening with several hundred friends and family. It doesn’t get any better than that. Thank you for your generosity, and thank you for joining me in my quest to find a cure. But, most importantly, thank you for making an extraordinary difference in the lives of so many people afflicted with this disease. Today was truly remarkable. Goodnight.
As human beings, I believe that we experience pivotal moments in our lives that help us to define who we are and what our purpose is here on earth. These experiences usually occur when we’re least expecting it, and oftentimes we don’t value its true impact until after the fact. Two weeks ago, I traveled to Maryland/Washington, D.C. because I wanted to be a part of the annual Spinal Muscular Atrophy conference put on by Families of SMA. I wanted to meet families in situations like mine and explore the nation’s capital and all of its history for the very first time, but what I took home with me from that trip was infinitely so much more. To everyone I met down in Maryland, every person who has been affected by SMA, every follower on this blog, and every person that stumbles upon this post, this is for you.
My time spent in D.C. was truly remarkable. My parents and I explored some museums, went to a few landmarks, and even toured the White House. Being in the White House was quite an unforgettable event, and although there were no sightings of the Obamas, I did spot the First Dog’s chew toy in one of their kitchens—that’s pretty noteworthy, right? Aside from being your typical D.C. tourist, my parents and I took part in SMA Day on Capitol Hill, a day where dozens of people (all who have been affected by SMA in some way) gathered at the U.S. Capitol to advocate for certain SMA issues. We were all assigned to meet with our local senators and congressmen, and I was unbelievably impressed by how receptive these politicians were. It was the uttermost honor to have had the opportunity to advocate for SMA with my senators and congressmen, and I am so grateful to have been included in such an important day for the SMA community.
During my time spent on Capitol Hill and at the resort where the conference was held, I also had the privilege of meeting so many families who all understood one another, and that’s something I’ve never really experienced back home. At times, it’s easy to feel isolated and lost when those around you don’t fully comprehend what a day in the life of SMA entails. I’m by no means suggesting we lead these intricately complicated lives, but we ARE different than your average person, and many times people don’t completely understand the challenges we face on a daily basis. Being surrounded by strangers who immediately know exactly what you’re going through and can relate on a personal level is actually a really great and comforting feeling. That was how I felt when interacting with everyone. Connecting with them just seemed so effortless; it was almost as if they’ve known me my entire life.
Upon meeting the conference attendees, there were several occasions where I was greeted by a, “Hi, are you Alyssa Silva? I read your blog!” Yes, it was a little startling at first because I never imagined myself being “noticed” hundreds of miles away from home. However, after listening to these people’s stories about their diagnoses and how inspired they were after reading my blog, I was left feeling deeply humbled by their words. Ever since I was a little girl, I’ve been so passionate about raising funds and awareness for SMA; and speaking with these families fueled an ever greater passion inside of me to instill courage, happiness, and most importantly, hope, into their lives. Being told firsthand that my words and my accomplishments have provided hope to a family whose son or daughter has been given a year to live, really put a lot into perspective. I guess you could say I’ve never fully realized just how widespread my blog has been over the past year and a half, and reflecting on my encounters with these families, I now understand that I have a voice that needs to be heard. And, I promise it will be loud.
After five incredible days, I left Maryland with a few souvenirs, a couple of suitcases, and a new understanding of my place in this world. You see, I’m the girl that was given two years to live, but now I’m the girl who has graduated college and is continuing to strive towards success. I’m the girl that has been beaten down by this disease countless times, but I’ve never been the girl who has been defeated. From tragedies to triumphs to everything in between, I’m willing to share my story if it means I’m helping someone. I never expected to receive any kind of feedback on my blog, but after hearing so many heartfelt messages from the people at the conference, I realize just how important it is for me to keep sharing my story. This is my purpose. I’m here to help, and I can only hope that someday I will make a difference in this world.
I’d like to thank my mother and father for working so hard to give me an amazing trip. Unexpectedly perfect it was, and wonderfully memorable it will always be. Love you!