WHAT A STRANGER’S KINDNESS TAUGHT ME

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…

HOW I MANIFESTED MY DREAMS

A couple of weeks ago, I was asked to be the keynote speaker at Lincoln High School’s National Honor Society banquet, and as fate would have it, I came down with the flu and was unable to attend. Fortunately, I have the coolest and most supportive mother on the planet who happily took my speech to the banquet and read it to the guests that evening while my father selflessly took care of me. Below are the words I had written down for her to recite, so I thought I’d share it with you.

Hi everyone. I want to start this speech off by saying how incredibly sorry I am for not being here tonight. I was both honored and humbled when Makayla asked me to give a speech at your National Honor Society dinner and was very much looking forward to being a part of your special evening. I’d like to express my utmost thanks to Michelle King and Makayla Lourenco for this opportunity, and thank you for still allowing me to share a few words with you.

I remember being in the very same position you’re in tonight eight years ago. Receiving this award is quite the accomplishment. You’ve worked incredibly hard throughout your high school career, and no one deserves this award more than each and every one of you in this room tonight. You did your homework. You studied. You worked through some challenging times. You kept your eye on the prize. You literally, without even knowing, dreamt up this day.

I believe that the mind is the most powerful tool we have. In fact, it is so powerful, that we have the ability to achieve great things if at first we choose to dream them. When I was a little girl, I had a picture of Thomas the tank engine in my room and it read: I think I can I think I can I think I can. If I were sick and feeling weak, my parents would point to the sign. If I were in the hospital fighting for my life, they’d whisper that little reminder on my wall. Although I didn’t realize it then, my dreams of achieving and breaking through the barriers that my unfortunate circumstances presented at the time were allowing for great things to take place in my life. The more I thought about what the little train had to say, the more I thought I could. And eventually I did.

As I got older, I slowly began to understand the idea that our dreams can manifest into reality. At ten years old, I decided I wanted to raise money for my disease spinal muscular atrophy. I thought of a name for my new project- Working On Walking- and I dreamt of someday donating one hundred dollars to find a cure. Yes, it doesn’t seem like much now, but that was my dream and I was going to chase it. In order to do so, I hand drew cards and calendars and sold them at local stores in the area. I did television interviews, newspaper interviews, and even had a spot in the Rosie O’Donnell magazine. Yes that’s correct. Rosie O’Donnell. I’m totally out dating myself here! Most of my days after school were spent drawing, coloring, and perfecting, and before I knew it, those $100 that I dreamt of raising, quickly doubled, tripled, and quadrupled right alongside of my dream to continue to raise even more money. Today, I have raised over $165,000.

The best part about all of this? I didn’t stop there. I continued to follow my dreams, set even bigger ones, and allowed myself to navigate through life knowing that I have the potential to achieve absolutely anything I set my mind to because I have the power to create and manifest my dreams.

It’s been fifteen years since I was that little girl with a set of colored pencils in her hand- and quite a lot has happened since then! I’ve graduated from Bryant University, began a part time job, work tirelessly in raising awareness for my disease, and even turned Working On Walking into an official nonprofit organization all because I made sure my dreams were far beyond any kind of limitation this disease was going to try to impose on me. Yes, I have experienced struggle throughout my 25 years of life. In fact, even as I’m writing this I’m battling a virus that is trying to rob me of every ounce of energy my fragile body has. Despite all the pain and suffering I am enduring right now, I remain focused on the dreams and goals I have set for myself this year. Life is always going to throw obstacles in your path to following your dreams, but it is how you choose to overcome them that is going to make all the difference.

As you begin to close this incredible chapter of your life, remember to never lose sight of those dreams that lie before you- regardless of how big or small they may seem. All the greatness in this world comes from those who choose to believe in their dreams and go after them. So, dream big Lincoln High School, and I hope you always remember to dare to be remarkable.

Congratulations.

Credit: Lincoln Public Schools

FINDING MY WAY BACK AGAIN

To the most remarkable community I’ve had the pleasure of getting to know- thank you for all your thoughts and prayers over the last several days while I’ve been in the hospital. They WORKED, and I am home, happy, and on my way to feeling like myself again.

These past couple of weeks have been both physically and emotionally trying for me. Sixteen days ago, I started out with the flu, and about five days into the virus, my body basically shut down from too much stress. From there, I went to the local hospital for an overnight stay, came home, and fought the flu with the amazing help from my parents and nurses. At the same time, however, I was experiencing difficulty keeping any food down.

I went a full week without eating. Any morsel of food made my stomach violently ill, and I was on a very fast downward spiral. After using what little strength I had to fight the flu, I had grown incredibly weak incredibly fast being unable to get food into my system. That was when we decided to head to Boston Children’s Hospital.

I can’t say this was an easy hospital trip for me, and for the first time in a long time, I felt helpless. I was scared, I was hungry and I felt as though I was slipping away. As I lied still for days hooked up to machines and with a tube in my stomach, I questioned whether or not I had the ability to bounce back. I used to be so strong. I was always the girl who persevered and triumphed in my trials and tribulations. Where was she? What had happened to her? Then, one day underneath the fluorescent lights, it all came flooding back to me…

It takes being weak to understand what it means to be strong. It takes some of the most trying times to realize that you still have the tenacity to fight. It takes time, it takes patience, and it takes faith. But, it will always get better.

Thank you again for all your sweet, funny and heartfelt messages and gifts that carried me through this time. Thank you to the most remarkable ICU staff at Boston Children’s Hospital for proving, once again, that I am incredibly fortunate to have some of the best doctors in the world right in my backyard. Thank you to my parents who fought just as hard alongside of me and never left my side. I couldn’t have done it without any of you.

Boston Children's Hospital ICU

TO A REMARKABLE SOUL

With heavy hearts, my family said one last goodbye to my beautiful cousin, Cheryl, yesterday, and there was not a single dry eye in the church. Death is never easy. You think you have forever with a person, but then forever gets cut short for reasons you may never know. Her time with us was not nearly long enough, but there is a sense of peace knowing she is no longer suffering and in pain from the cancer that took her away from us.

Those who knew Cheryl knew just how much positive energy she exuded every single day of her life, and I hope that’s never forgotten. As another fundraising season is beginning to take place, I’m reminded of how much of a supporter Cheryl always was with WOW. She never missed a fundraiser, always read every blog, and never failed to give me her utmost love and support in every journey I’ve embarked on. It’s no surprise though. She was the kind of person who gave all that she could to everyone around her. I’m just fortunate enough to have known a person like her.

Cheryl, I will keep you close in my heart in all the preparation that will be done for this year’s fundraiser. You are going to be greatly missed, not only at our crazy family functions but also at the fundraiser. I hope your infectious smile will shine down upon us that day. Thank you for gracing us with your presence and love here on earth. And, may your soul beam even brighter now that you’re home in heaven.

12805780_10206276602942458_3062670722963412233_n

THE JOURNEY TO “DARE TO BE REMARKABLE”

Three years ago today, I embarked on a journey that would eventually change the course of my life for the better. On February 26th 2013, a simple project began that later grew into something so much bigger than what I could have ever imagined, and I’m here to tell you a little bit of what you might not already know. This is the story of Dare to be Remarkable.

The Journey to Dare to be Remarkable
Justin and I at the wedding

It was an early morning in January when my brother, Adam, reached out to his friends asking if they would be willing to help in spreading my story as a way to raise awareness for SMA. Many people responded affirmatively, but there was one person in particular who reached out to Adam individually. His name was Justin, and we had met at a wedding that previous summer. Justin’s best friend had married my cousin, and being in the wedding party, he and I were paired up to be partners. I could go on and on about meeting him and how we totally killed it on the dance floor that night, but I’ll save that for another day!

In his message to Adam, Justin explained how he worked at a film company (later known as Animus Studios) and that he and his partners would love to volunteer their time and services in any way they could. So, on this very day in 2013, we began filming for (what we thought would be) a short 5-minute video about my life for a website called HooplaHa. However, after receiving such a positive response, we realized that this “project” was meant to be so much more.

We are now on year 3 of filming for Dare to be Remarkable, a full length documentary about living with SMA, and this journey has been nothing but fulfilling and humbling as we work to spread the message of what it means to choose to live remarkably. Despite the everyday challenges and obstacles we face in life, we are capable of anything we set our minds and hearts to. We have the power to choose strength, to choose happiness, and to choose to live beyond our limitations. We have the power to dare to be remarkable.

0eb2861068149ef7d5d0d1dba89c0226

We are very excited to announce that Dare to be Remarkable will be released THIS SUMMER, so please stay tuned for more information! In the meantime, though, I thought I’d share a few facts you may not know about this documentary. Enjoy!


The Journey to Dare to be Remarkable
Our first day!


1. The thought of having a camera around terrified me at first.

I remember waking up for our first day of filming feeling incredibly nervous. My palms were all sweaty and my voice was shaky, and I remember attempting to lessen my nerves by cracking a wheelchair joke along the lines of, “at least I can’t trip and fall on camera. Ha, see what I did there?” Knowing this got me through the first couple of filming sessions before I actually got comfortable with the camera there.

2. Dare to be Remarkable was a gift…sort of.
Several years ago, my friend got me a wall decal for my birthday that read…well…Dare to be Remarkable, and it’s been on my wall ever since! Justin and I both thought this title perfectly embodied the purpose of this documentary and the message we wanted to send. It is encouraging, inspirational and a poignant reminder of how we should live life every day.
The Journey to Dare to be Remarkable
3. I almost cried watching the first cut of the film.
Watching the last three years of my life unfold was a very surreal experience. It was almost as if I was watching someone else’s life. Having these moments captured on camera reminded me how fortunate I am to have the most remarkable and supportive people in my life and how far I’ve come in just three short years. It’s easy to forget to appreciate all that life has to offer, but seeing it right before my eyes made me count my blessings twice that day.

4. My friends are super camera shy.
My friends are a big reason why I consider myself to be so blessed, and without them, I wouldn’t be who I am today. Having them be a part of Dare to be Remarkable was so important to me, but I just wasn’t sure how receptive they would be to this idea knowing they were a little uncomfortable around the camera. Fortunately, you will see some shots of them in my documentary- just know that I had to bribe them with food.😉

5. I am working with some of the most talented guys in the biz.
Producing a documentary with Animus Studios has been one of the best experiences of my life. Their hard work and dedication to Dare to be Remarkable has far exceeded my expectations for this film, and I can’t wait to finally show you this summer just how talented they really are. Getting to work with Animus these past few years has been an opportunity of lifetime, and I am forever grateful to each and every one of them.

HOW I FOUND KINDNESS IN 2015

IMG_8540

Last week, I was having breakfast at Dunkin Donuts when a woman approached me with a friendly smile across her face. I had seen her there a few times before, and as we began talking, the woman suddenly started to cry. She slid
her fist across the table, and in it was a one-hundred dollar bill. As she wept, she said, “I need you to have this,” then wished me and my friend a merry Christmas and went back to her husband who shot us a smile from his table.

kindnessWhen I got home that day, I took the bill and had it paper clipped to a frame on my wall. It may sound a little unorthodox since I could probably do A LOT with that one bill, but I needed to put it there. I needed to put it there to remind me that there’s still so much kindness in a seemingly unkind world. I needed to put it there to remember that random acts of kindness are going to make all the difference in today’s society. I needed to put it there to remind me just how kind 2015 has been to me.

Kindness is contagious. It brings a sense of purpose to your life and feeds your soul. It humbles you. And, there’s only one thing better in this world than receiving an act of kindness…it’s giving it. Giving kindness allows you to express your most authentic self. It shows your selflessness and gives you the opportunity to make a difference through your words and actions. It is what the world needs more of.

To the people who have showered me with their kindness, thank you. Thank you to all those who were a part of the 530 Working On Walking fighters that one beautiful night in August. Thank you to the people who work tirelessly on the fundraiser and donate so much of their time to my cause. Thank you to my friends who have cheered me on and kept me smiling when life became too hard. Thank you to my family, supporters, and even strangers who have encouraged me along the way. I am a better person because of your kindness, and I am doing my best to pay it forward.

The year 2015 has given me so many memorable moments, I will leave you with this video I received from my good friend, Stacey James, the night before Thanksgiving. Being the kindest man I have ever met, Stacey was just being Stacey and decided to send me a little email surprise. (But, truthfully, it was more of an I-think-I’m-having-a-heart-attack-I-am-utterly-speechless surprise.) The more I thought about the video, the more I realized it is the perfect example of KINDNESS and decided to share it with you. Tom Brady, Stacey James, and the entire Patriots organization do incredible things for people every day, and people need to be reminded of all the goodness that takes place off the football field. It’s small acts of kindness like Tom recording this video for me that are going to inspire people (including me) to want do the same.

Here’s to spreading more kindness in 2016.

HAPPY 1ST BIRTHDAY, WORKING ON WALKING!

If there’s one thing I’ve learned in the past year, it’s that each and every one of us has the power to create an impactful and inspiring change in this world. Through togetherness, kindness, and the willingness to make a difference, we can create the opportunity for a better world, and the last 365 days have been filled with just that. Because of remarkable you, we have created a movement- one that will continuously provide awareness to SMA- as we aim to educate individuals on this disease and bring hope to the promise for a treatment. We have donated funds to research programs and the scientists who hold our futures in their hands, and we have helped families in need. But, most importantly, we have shown the world what it means to truly be remarkable. Today marks the first anniversary of Working On Walking becoming an official nonprofit organization, and because of remarkable you, I can’t wait to see what the next 365 days bring.