GUEST BLOGGER: FROM THE OUTSIDE LOOKING IN
It’s the last Sunday of the month which means it’s time to feature my next guest blogger! Below is a piece written by Krystina Pallos, the amazing girl who will be marrying my brother in just 34 days. In this post, Krystina explains what it was like to enter into a family as someone who was unfamiliar with a person living with a physical disability, let alone living with Spinal Muscular Atrophy. Her words have truly captured the essence of this family and the world in which we live in, but before you proceed, there’s something I must share with you all, first.
Krystina may think she’s the lucky one to be marrying into this family, but we are even luckier. You see, not everyone will care to understand what we go through on a daily basis. Not everyone will make the effort to help. Not everyone will be accepting of this disease and all the extra “stuff” that comes along with it. But, Krystina has. She has shown her love and support for this family and has always been accepting, understanding, and ever so willing to help. She’s the perfect girl for my brother. And, as for me, I cannot WAIT to officially call her a sister in just a few short weeks.
When Alyssa asked me to be her guest blogger for this month, I was honored and nervous at the same time. I have known Alyssa only three years where her past bloggers have known her pretty much her whole life. But, the more I thought about it, I realized I could give a very different perspective from others in Alyssa’s life. I could give the perspective of someone who came from the outside of the family.
I came into her life in 2012 without ever personally knowing anyone with a physical disability and had never even heard of SMA. I hate to admit that I was scared to interact with her at first, but I was unsure how to act. Should I offer to do things for her or just wait for her to ask me? Should I ask people to move their chair so she can get by or will she just ask herself? After some time of sitting on the outside and watching how her family and friends interacted with her, I got the answers to my questions.
For being someone who has to rely on others for nearly every task, I have never met someone more independent. She will let you know when she needs something, she will arrange all her own plans and she loves meeting new people. I often joke that for someone who can only sit still, Alyssa never actually sits still and hates just staying in the house and doing nothing. Even if it is just going for a car ride to get Awful Awfuls (our favorite milkshake here in Rhode Island which I will always gladly go with her for), she just wants to get out and be able to do the same activities as people who do not have a physical disability. SMA has taken away most of her physical capabilities, but she refuses to let it take away anything else.
As I often tell people when I talk about my future family, the Silva’s love so hard. They know no other way but to take one day at a time and work as a team. They are so close and open with each other as it seems the keys to making it all work are communication and lots of love. They have showed me that having a family member with a physical disability is an experience you should embrace with positivity. Some days are definitely tougher than others, especially those nights when there is not a nurse so everyone can just get a little sleep, but the good far outweighs the bad in the Silva house. There is always time for some laughter and love no matter how long the day was. They will not let SMA win this fight. Instead, they have always been in Alyssa’s corner helping her to be a true champion.
Three years ago, I started on the outside with no idea what SMA was or how to interact with someone living with it, as well as trying to figure out how to fit into this super close family. Marrying her brother, Adam, next month means I am officially on the inside! I have learned when I am needed without asking, what foods need a fork and which need a spoon when feeding her (I had a few spills when learning the correct techniques, sorry Alyssa!), how to perfectly bake cookies or brownies so they are soft enough for Alyssa to enjoy, and to move my feet when I am sitting in the back of the van... Or else she will run them right over. She has had such a positive influence on my life as well as my family’s lives, and I'm pretty sure she has taken over the title of my mom’s favorite child. Growing up, I always wished I had a sister, but now I understand why I was blessed with two brothers. It has made me so much more thankful for finally gaining a sister when Adam and I get married. And, not only am I gaining just any sister, I am lucking out and gaining the most remarkable one.
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