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.
When 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.
Andrew 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”: