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Reflections

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.

When 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.

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.

Family and friends, I’m going to need your help. With Thanksgiving right around the corner, I was hoping we could all take the time to give back and help out a cause- something I have been doing now for the last fifteen years. I promise it will only take a couple of minutes.

As a little girl, I can remember my parents packing a bag and making a trek up to Boston Children’s Hospital to see a special team of doctors with me. Given that this disease was progressive and untreatable at the time, there was never any good news from these appointments. I remember always feeling sad and fearful, so in an attempt to make me feel better, my parents would take me to the hospital gift shop and let me pick out a stuffed animal. It was the only thing that made me smile on those days.

Almost two decades later, those same feelings of sadness and fear still exist inside of me. I’ve lost the ability to hand write. I’ve lost the ability to feed myself. I’ve lost so much energy. And, just in the last six months, I’ve very slowly begun to lose the strength to breathe on my own. It often makes me wonder what’s next. This isn’t something that is meant to scare you. I love my life and wouldn’t trade it for anything, but it’s important for me to share a glimpse of reality with you. However, there is a silver lining to my story here. Unlike the little girl who only had her stuffed animal to cling on to underneath fluorescent lights and four white walls, I now have something more powerful and promising to cling to- hope.

There’s currently a drug called SMNrx which has been proven safe and effective for individuals with SMA. Although this is incredibly promising news to the SMA community, we now have the biggest hurdle to face: getting this drug approved by the FDA. The FDA approval process can take years, years that many of us don’t have left, which brings me to why I need your help. An Acceleration Approval option is available to us, we just need our voices to be heard by the right people. You with me, guys?

Below is an email template. Please copy and paste it into a new message, fill out your information, and send it to the email addresses listed here. That’s all I’m asking you to do- see how simple it is?! Imagine a world where SMA can no longer take away the things in life so many people take for granted. Imagine a world without SMA.

Please send the email to:
John.Whyte@fda.hhs.gov
Diane.Ruiz@fda.hhs.gov
janet.woodcock@fda.hhs.gov
john.jenkins@fda.hhs.gov
In the “Cc” line please enter: INFO@THEFASTMOVEMENT.ORG so that we can track how many emails are sent.

https://docs.google.com/document/d/1qkvrnYkjbmu3LUJliOVbu04G7F60dEfNyklcUYoj1ms/edit
(In regards to patient age and type, I’m 25 and have type 1)

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I guess you could say a part of me would have appreciated receiving a little piece of advice from The Universe telling me to just stay in bed when I woke up this morning. But, then I wouldn’t have been cornered by rooster, reminded that I really don’t like birds, laughed at the essence of timing and how it’s never really been on my side, brushed up on my español, and acknowledged just how much I love my crazy, beautiful life. Let’s start at the beginning, shall we?

I went to my favorite country store/coffee shop in town this morning to kill some time before a meeting. This place is located on an apple orchard with a farm-like feel and is really the perfect place to grab a coffee and a pastry and just relax. So, there I was, sitting with my friend in the greenhouse, minding my own business and sipping on a chai, when suddenly Wish started ferociously barking at a rooster that decided to waltz in right towards us.

With nowhere to go (I was sitting in the back) and Wish getting more uneasy, my friend ended up having to chase the little beast out of the room. Twice. Flustered, yet very relieved, I was then approached by a woman who asked if my friend was a caretaker or relative. Because how could I ever possibly have friends, right? Her reaction to finding out we were friends upset me, but I brushed off her ignorance for the time being, decided we needed a change of scenery, and headed outside only to then have a bird poop on me.

Despite the morning mishaps, I was way ahead of schedule and figured what better way to turn this day around than by arriving early, thirty minutes to be exact, to my meeting for once. It was a rather rough morning, but I decided to embrace my inner Taylor Swift and just shake it off. So, that’s what I did, and as I did one final check on my phone before heading inside to our meeting place, I noticed I had a text that read: “hi meeting canceled.”

It was a good effort on my end, but clearly not good enough. That’s when I finally decided to just throw my responsibilities out the window, call it a day, and enjoy this gorgeous Indian Summer we’re having in the Northeast. And, I did. Aside from having the most perfect November afternoon at a park by the bay, I also had the opportunity to brush up on my Spanish skills when a passerby asked my friend if I was her “hija”. Yes, that’s right, the woman asked my friend, who’s the same age as me, if I was her daughter. Soon after, we left the park laughing at how bizarrely eventful this day was.

Through the chaos in which I call my life, there’s always a lesson to be learned. Today, I learned a few, and I thought I’d share them with you.

1. Be grateful for the people in your life and never take them for granted. I’m incredibly fortunate to have friends, to know what it’s like to be cared about, and to always have a shoulder to lean on. Not everyone has that kind of person in their life, but I do, and I should feel more appreciative.

2. Sometimes life doesn’t go according to plan. So, roll with the punches, create a better plan for yourself, and put on some Christmas music and shamelessly blast it down the highway. Because Mariah Carey Christmas will never get you down.

3. Don’t forget to laugh at your crazy, beautiful life.

Birthdays take on a slightly different meaning around here.

I was just shy of turning six months old when my parents received my grim prognosis. With very little access to the Internet, they were told very little about this disease and were left in the dark to care for their terminally ill daughter. Because of the severity of my condition, they were told I wouldn’t live past the age of two. However, as the doctor left my house that one dismal day in April, he looked at my parents and said, “but, I believe in miracles.”

With heavy hearts, my parents decided to have a birthday party for me a few days later- to celebrate my six-month mark. They feared I wouldn’t live to see my first birthday; so, they bought a cake, invited over a few family members, and through tears and profound sadness, found the courage to laugh and smile that day. What they didn’t understand yet, though, was that day would be the beginning of many more birthday blessings (and cakes!) to come.

Yesterday, I turned 25 years old, and I think 25 is one of those years where you kind of just stop what you’re doing and take a minute to reflect. Some may call this birthday the time for a quarter-life crisis, but that didn’t happen here. Unless you consider impulsively chopping your hair off to be a quarter-life crisis, then in which case, yes, I totally had one. But, I think many people consider 25 to be that age where you literally question everything in existence and everything you’ve ever believed in and wonder where the hell your life is headed. That just wasn’t the case for me.

Instead, I woke up yesterday, looked down at the floor at my birthday Wish (who inconsiderately woke me up at 6am), and felt grateful. I looked back at my life and thought about every moment that led me to the here and now. Every illness that kicked me down but only ended up making me stronger, every accomplishment I never thought I’d make in fear I wouldn’t see tomorrow, and every person who has made my life a little more special has all led me to the person I am today. This isn’t a quarter-life crisis at all, I thought. It’s a quarter-life blessing.

So, yesterday, we celebrated. I gathered my closest friends, cleaned up the pooches, and hosted a Disney/WISH Upon A Star/Vince Charming themed party- photo booth obviously included. There was no place in the world I’d rather be than with the people who have always loved me and seen right past my disability for who I really am. Compared to decades ago on that fateful day in April, yesterday’s birthday celebration took on a whole new meaning- one that will be remembered and cherished for a lifetime. As I went to bed after having the most remarkable day yesterday, I realized the miracle isn’t that I’ve lived to see another year. The miracle is that I was given the best friends and family to share another year with.

From the bottom of heart, thank you for every birthday text, email, and Facebook post. You guys have never made 25 look so good.

Blend

Day Eight

Today is October 4th, the day that I have returned home from Alpharetta, Georgia. When I received that very special phone call from Canine Assistants on New Year’s Eve, they said this would be the day I’m returning home, and that’s when I knew immediately. This whole experience was meant to be a part of my journey. Thirteen years ago today my life changed for the better, and the very best furry friend a girl could ask for came into my life. His name was Fred, and he was my first service dog. Now, on October 4th, I am starting a brand new journey with Wish, an ever so gentle service pup who has kindly picked me to be her forever home. Some may call this a coincidence, but I see this as a sign.

These two pictures you are looking at were taken thirteen years apart to the day…in the very same location with (ironically) the very same autumn decor. Even after Fred’s passing, today’s return home with a new service dog was an obvious sign that he is still watching over me from above. From the very moment he left this earth, I see little pieces of him throughout the day. And, just yesterday, I received this text from my brother: “God just gave us a little sign that Fred is still around and looking after you. I was waiting in line at Pet Smart buying Wish’s bowls and treats and the woman in front of me was with her dog named Fred! How weird is that?”

It’s not weird. It’s just Fred reminding us that he’s always going to take good care of me and Wish from this day forward.

Welcome home, my little love.

  

Blend

Day Seven 

We often go into an experience with certain expectations for the outcome. We create these scenarios in our heads and expect them to unfold the way in which we intended. But, oftentimes, The Universe has a funny way of working itself out, you know? You eventually come to understand that maybe, just maybe, the unexpected is far more meaningful and wonderful than what we had ever expected before.

Today, Wish and I graduated from service dog training camp. That’s right, cue the Graduation Song by Vitamin C because we have officially turned our tassels to the other side- in the metaphorical sense of course. But, just like how any other graduation goes, emotions ran wild. Well, at least for me and my mom.

As we went to get on the bus back to the hotel for the very last time, Wish refused to leave. She plopped herself at the bottom of the stairs as if she knew she wouldn’t be coming back. After some convincing and tugging at her leash, she reluctantly came on and went straight to her momma’s lap. I am eternally grateful to all of Wish’s trainers and foster family for raising this girl into a well-mannered service dog. I’m also happy to be going home, but I think if I could, I would’ve plopped myself at the bottom of the stairs, too.

You see, I began this trip under the impression that I would go to class, do my thing, then head back home with a new companion. Sure, I did that, but there was SO much more than what I was expecting. When the bus turned left out of the Canine Assistants farm, a bittersweet feeling overcame me, and that’s when I realized: I met an exceptionally remarkable group of people down here, (including a few with Spinal Muscular Atrophy!) and I was honestly going to miss them. You don’t really expect that to happen, you know? After all, it’s only seven days, and these people are all complete strangers to you. However, that just wasn’t the case here.

Goodbyes are never easy, and I was reminded of that today. With gratitude in our hearts and melancholy eyes, we said goodbye to the dedicated trainers and staff, to the amazing foster families who selflessly cared for our dogs and socialized them for the past 14-18 months, and to each other. I’ll never forget this week, and most importantly, I’ll forever carry each person here in my heart. I wish you all the best.

See you tomorrow, Rhode Island. Wish can’t wait to meet you.