Do you ever wonder what life would be like without dreaming? Day to day, just going through the motions, no goals, ambitions or hope for the future? When you turn on the tv and you hear all the negativity surrounding us from politics, violence, discrimination, disasters both natural and manmade, it can be disheartening, to say the least. As a society, we are inundated with such negative talk. The reality is, negativity sells. People are drawn to reading disturbing news way more than hopeful, inspiring, promising articles in the media.
I see it daily in my social media feeds. Here’s the thing, we can give in to the negativity–the gray bleakness that we are being fed at all angles–or we can dare to dream of possibilities for the future…and for that matter, if we are going to dream, why not dream BIG?
Back in 2010, I received a phone call that changed not only my but my whole family’s life in an instant. My daughter’s neurologist called and matter of factly stated that test results confirmed that my 16-month-old had a rare genetic disorder called Angelman Syndrome (AS). He didn’t offer any consoling words or advice, just a recommendation to follow up with his office. As soon as I hung up the phone, I did what any parent would do – I flipped on the computer and googled the disorder. Bold, crushing words jumped off the screen at me…life-threatening seizures, no verbal communication, may never walk, sleep disorder, cognitive and developmental delays, requiring 24/7 lifelong care.
My world became very dark, not even the shades of gray that many function in daily, but black. I would get up in the morning after sleepless nights with my daughter, go through the motions of the day, just passing time, hiding from the rest of the world. I let the words I read consume me. I felt like all the beautiful dreams I had for my children and our future had died. My only solace was found in escaping to the trails for a weary run or bike ride. As I pounded the dirt, working my way through those stages of grief, disbelief, hurt, anger and sadness, I started to realize something. I didn’t have to let the darkness control my life. I could run. I could bike. I could do something.
I say to you today, my friends, though, even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.
– Martin Luther King, Jr. –
I started dreaming more on the trail. I dreamt of curing Angelman Syndrome–after all, in 2008 it was cured genetically in the mouse model. While children are not mice, the science was there and researchers believed it not only could happen but with the right funding and research, it could happen in the next five to ten years. This dream gave me hope. It pushed me onward over the miles, further and faster.
I realized that I could either hide from the world or let the world get to know me and my child through the sport that I sought comfort in. I signed up for a race, then another. As my daughter was challenged in therapy to learn how to walk, to communicate, and to feed herself, I challenged myself with bigger races, bigger goals. What has followed in the years since that life-changing phone call has been an adventure more rewarding than I could have ever imagined.
While Angelman Syndrome is still not cured and each day at our house presents new challenges, human clinical trials for quite a few therapeutics, including a very promising gene therapy approach to curing AS are just around the corner. And my racing…I have been fortunate enough to race not only all over the U.S. but will get to represent Team USA in Canada this coming August for ITU Cross Worlds. A true dream come true. Who knows, maybe I will even get to stand on top of the podium and hear our National Anthem being played while donning the stars and stripes of our country. It may not happen, but I can train hard, give it my all, and dream, right?
What I have learned so far on this journey is a similar philosophy to so many who have overcome insurmountable odds to reach the peak of their own mountains. These people, the Martin Luther King Jr’s, the Oprah Winfrey’s, the Dick Hoyt’s and Meb Keflezighi’s of the world, were all dreamers. They dreamt big dreams for their families, their country, and for their future. They did not let their current status or situation control their hopes or diminish their goals. While their dreams may not have come true overnight, or even fully in their lifetime, they believed passionately in themselves and their cause and did little things every day to bring them one step closer to making their dreams come true.
I urge each one of you reading this to write down a dream, a big dream, and map out the steps to make it come true. Do not sit on the couch and say “I can’t because of this” or “She doesn’t know my situation”. You’re right, I don’t know your situation. I also don’t know if your dream will come true. But I do know this, if you put it off and say “one day maybe I will eventually ___ (fill in the blank with ‘run a marathon’, ‘take an epic mountain bike adventure trek’, ‘climb a mountain’)”, that day may never happen. But, if you write it down and map out a plan, doing something every day that will help bring you closer to your goal–saving a few dollars daily, starting a workout routine, drink one more glass of water instead of soda–you will be on your way to making it happen.
After my daughter was born, my life changed. I realized that in an instant, life as I knew it could take a total detour. I decided that if I was going to live, I wanted to live BIG, to dream BIG dreams and work hard every day to make those dreams a reality. I do not want to look back one day and wonder ‘what if’ because I know that even if I fail to accomplish some of the BIG goals I set in life, I gave it my all–and that, in the grand scheme of things, will always be good enough.
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