Yesterday I woke up with a heaviness inside my soul that I thought would rid itself after a good night’s sleep. After having a physically and emotionally exhausting day the day before, I thought for sure the anger and frustration I was feeling was just a result of the fact that I was tired and hungry. But, instead, I started my day feeling the same way I felt going to bed the night before- defeated and drained.

I went back and forth with the idea of writing this blog post. I’m not the kind of person to sulk and feel sorry for myself nor do I want others feeling that way towards me. But, just like many writers can attest to, writing is my form of therapy. It allows me to think more clearly and gain a sense of relief as I type these words out to share with the world.

So, before I begin to chronicle my thoughts and experiences within last 48 hours, as the reader, I hope you understand that this isn’t a post meant to draw attention to my shortcomings. What you’re about to read is a snapshot of my life living with a horrible degenerative disease, yet surrounded by something that it can never take away- love.

A couple of days ago was my annual SMA appointment, a day in which I spend hours in a room at Boston Children’s Hospital, and teams of doctors come in to discuss my needs and measure the progression of my disease. Or as I like to put it- it’s a day in which a group of doctors basically discuss how your disease is destroying your life in the nicest, most delicate and intelligent way possible.

Now, I must say how truly fortunate I am to be a patient among the best doctors in the world. I trust their judgements and respect their decisions as I understand they know and want what is best for my well being. However, this makes hearing what they have to say all the more difficult. Because I trust them. Because I know that their expert medical advice and guidance is only going to help me. But, it’s still a lot to swallow. And I’m not sure I’m ready to make such life-altering decisions.

I left the hospital that night feeling envious. I envied the person walking in the lobby who was able to eat a meal and not worry about being under nourished. I envied the valet man who had the strength in his lungs to yell to his co-worker from across the way. I envied the surgeon who had the strength in his hands and feet to save someone’s life. I envied anyone and everyone not living with SMA that night and couldn’t shake the feeling. So, I went to bed.

As I previously stated, I woke up still feeling pretty crummy the next day, but I eventually forced myself out of the house with a friend to keep my mind occupied. So, in an attempt to drown my worries with copious amounts of coffee, I found myself in line at a Starbucks getting my third cup of the day. Suddenly, a woman approached me and said, “hi! Remember me?”

She was a petite woman with kind eyes and radiated a kind of energy that made you feel at peace. And, despite the fact that I am my mother’s daughter and have a terrible memory, I recognized her immediately. She was the stranger I met in Dunkin Donuts at Christmastime- the stranger who gave me a $100 bill.

“What a lovely surprise! Of course I remember you,” I exclaimed as we exchanged a hug and a kiss. We spent a few minutes catching up and before she returned to her table, she handed me $100 more. As hard as I tried to refuse the gesture and explain her kindness at Christmas was more than enough, she said, “you deserve this more than I do. By the way, my name is Cookie.”

I watched Cookie return to her table before ordering my coffee. After I gave the barista my order, I turned around a second later to continue talking to the woman at her table, and she was gone. Not a single trace of Cookie in sight. I looked at my friend slightly confused while still in a state somewhere between shock and awe.

“Where did she…?” “How did she…?” “Why did she…?”

I couldn’t seem to form a complete sentence after what I had just experienced. I took a long pause, and finally said to my friend, “I think…she’s an actual angel.”

In that very moment, I found the clarity I so desperately needed when I woke up that morning. It wasn’t sleep or food or wallowing that I needed to move past the inevitable disappointing realities I faced the day before. It was Cookie and her innate ability to demonstrate kindness to someone she hardly knows. Through her kindness, I was reminded of all the love that surrounds me each and every day and how fortunate I am to be in the position I’m currently in. SMA can take away my muscles, but it can never take away the love that fills my life. And, that’s really all I’ll ever need to keep moving forward.

Cookie, wherever you are and whoever you may be, thank you for being an angel here on earth. You will never know how deep your kindness has impacted me and how close I hold you to my heart. Until we meet again, dear friend…

Author: Alyssa

Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨


  1. As your mom, I die a little every time we have your yearly sma appointment. Though extremely grateful for the best doctors you could have, it kills me to see you hear about how this disease is stripping your life away. But, as I’ve often told you, one of the greatest blessings of having sma, is seeing firsthand the amazing kindness in this world. Though my favorite was macadamia chocolate chip cookies, I think this “Cookie” is my favorite now. Keep fighting. You’re my hero

  2. You did it again….or should I say “oops You did it again!” Great blog! And yes there are many Angels in your life. Some that we see and others that we don’t. Oddly, they have brought you here and in turn you have inspired, touched, moved, and made a difference in so many people especially the SMA community. I guess that would make you Angel.

  3. My wonderful Alyssa, you’ll never know how much we, uncle Paul and I, love and cherish you! You have brought us so much joy and understanding of the truly remarkable young woman that you are into our lives! Remember, some of us don’t see you as handicapped! We see you as a beautiful angel that we love! You have taught us all so much! Cookie is someone like that. She sees you as an angel here on earth trying to find a cure and to help people! I’ll bet she knows all about your endeavors and she too knows you are Truly Remarkable!! We love you, MFA and MFT 😘😘

  4. That was beautifully written… She is your guardian angel…. Just from reading your post you are a remarkable woman…. You are so fortunate to have a wonderful family, that I have know since I was a child…. I grew up with your Dad lived right up the hill from them… So many great memories… Memories are the best and you are making them everyday… Keep being strong… Love and prayers to you and your family…

  5. I’m not sure what the team of docs said to you , however I can only bet they forget to tell you that you have a magnetic energy that attracts everyone you meet into your force field . A power so strong , if bottled , would light up the universe . They say ” like attracts like ” , I guess that says it all my beautiful Angel Alyssa . Now , go continue to be ” remarkable “. πŸ˜‡

  6. Wow! Amazing you truly have met another one of your true earth Angels. God bless and continue being remarkable!


  7. You are my angel, and I am so happy you are in my life! I am grateful for the day that you wheeled into my classroom with your sassy self! Love you. Can’t wait to visit! πŸ’•

  8. Alyssa – You have completely changed my day for the better…yet again. And when I say ‘day’, I should be saying week, month or year. You are a gifted writer and I always look forward to your new stories and posts. I’m certain that there are hundreds, and most likely even thousands…of people on this planet that consider you their Cookie. It’s definitely true for at least 4 Thibs from Cranston!

    Love Bruce T

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