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!