Guest Blog: “Unknown Bucket-List Item”

My friends always joke with me that I often win… raffles, contests, giveways, etc. It is true but I attribute it to living in the small percentages. I like to say that my small percentage of bad luck (stroke at 21, rare diseases, Moyamoya diagnosis, brain surgeries) is sometimes equaled with my small percentage of good luck. And boy was winning this opportunity from the Genesis Foundation for Children quite the Facebook contest win!!

On Friday, I had the distinct pleasure of attending an event with my son called “On the Field at Fenway”, a fundraiser for the Genesis Foundation for Children. I was excited to be able to bring my son Zack to this event as I tend to have many experiences with my daughter. Zack likes baseball. He isn’t a die-hard Sox fan but I knew this would be cool to do with him.

We left North Attleboro bright and early not quite sure what the day would bring. Little did I know how much the day would exceed my expectations! We stopped for gas, picked up breakfast and were off to the city.

After arriving at Fenway, we grabbed a seat in the stands for opening remarks. We listened to a doctor speak about the Genesis Foundation for Children and its mission: The mission of The Genesis Foundation for Children is to provide funding for the diagnosis and compassionate, coordinated care of children born with physical, intellectual, and genetic disorders, and to aid them in achieving their full potential. As I listened to the speakers and award presentation, I realized this was a life lesson opportunity for my son and a reminder to me to keep advocating and fighting for those with illnesses and rare diseases. I knew I was supposed to be here to listen to this message and that it would help my son gain a different perspective on life.

We were delighted to hear from the lovely Sox poet laureate, Dick Flavin who shared his Fenway poems with us. His poem mentioned all the Red Sox greats over the past 100 years so certainly got me excited! We then heard from a doctor from Boston Children’s Hospital who directly benefits from the funds raised by the Genesis Foundation. She discussed a young boy who passed away after a lifetime living with courage, confidence and strength despite being born with only half of his body. Mr. Latham died at age 17 but his parents established an award to continue his memory. We were blessed to hear from them this year’s award recipient, a young man born with visual problems. Despite not being able to see, he regaled us with his accomplishments including sky diving and wake boarding- clearly showing us his amazing spunk, humor and courage. Feeling sufficiently inspired by the goodness in this world, we then went to our first or five stations.

Gordon Edes, a reporter for the Boston Globe for 20 years, now serves as the Red Sox historian. Appropriately calling himself the ghost whisper, Gordon regaled us with stories of past Red Sox moments. .As I sat there listening (definitely more interested than Zachary), I realized how instrumental the Red Sox have been in my own personal history. I was easily able to answer at the question about the defining moment for the Red Sox in 2004 with the base stealing Dave Roberts that lead to winning of game four and then winning game five winning not even 24 hours later. I was also able to chime in when we talked about winning the 2013 World Series since I got to live that moment in person with my Dad at Fenway. So cool.

Next up was the Green Monster station. We filed onto the field which felt to me like walking the red carpet. Zack quickly dragged his hat in the Fenway dirt so we could say he had a piece of Fenway on his North hat. We meandered out to left field taking pictures by the Green Monster, touching the outfield walls and even peeking inside the Green Monster. We met some nice people who kindly lent us their gloves for fielding. A volunteer would hit the ball high on the Green Monster. When it bounced back to the field, Zack would field it and throw it back in. He did great and had a fun time. I was up next and just love to do it. I fully felt the excitement that I was in Fenway Park catching a ball off the Green Monster. For a 41 year old mother of two, I must admit that I wasn’t too shabby. It brought me back to my softball memories- such special times in my adolescence. While playing in left field, we met Jesse and his dad. Jessie is a 13-year-old boy who looks about five and was born with a genetic mutation. His Dad explained that he is only one of three in the world with this mutation. Jesse loves baseball and can’t play due to his medical challenges, but his smile here on the field said it all. Jesse is why we were all there.

Pitching was up next. Zack made a 10 year old friend along the way who enjoyed being first to each station. The boys lined up for accuracy pitching first, then speed. Being the youngest in the group, Zack did a decent job hitting the black mat and even the strike zone a couple times. Despite being an old lady (and one of the few women participating,) I jumped right in and pitched a few balls. I only hit the black mat once but still felt happy. Speed was next and I think I had one of the slowest of the days. I looked silly but didn’t care as I was PICTHING AT FENWAY! At this point we’re feeling comfortable in the park and meander into the opposing team’s bullpen. We each even got on the phone pretending to make a call for the next pitcher. Before our next session, we enjoy taking photos with the Pesky Pole. Zack isn’t that into it. I love that a “cool” 22 year old guy tells Zack how he will cherish this photo as he grows up.

Our fourth station is the dugout. I had no idea what excitement this would bring. I was picturing sitting on the bench in the dugout looking out at the field. Little did I know that we would meet and get autographs from five Red Sox alumni players. We could touch and take photos with the three World Series trophies. I especially love this photo of me with the 2013 trophy, symbolizing the game I went to with my Dad. It means a lot to him too. So what I didn’t know about Fenway is that there is a whole part behind the dugout that the players use. We walked into what I thought was the bathroom and discovered an area that contains an indoor batting cage, a technology filled war room, a players’ bathroom (complete with AED!), a medical table, a cooler, an exercise bike and various other things. Zack and I both had an opportunity to hit off the tee and Zack even got a quick workout in on the stationary bike.

Our final station was certainly the most exciting. Hitting a ball at Home plate at Fenway Park! As we waited in line, we had an opportunity to meet Tessie and Wally. Tessie even gave Zack a big smooch. Zack went up first and opted for the pitching machine despite its 50 mph setting. He missed the first couple balls but eventually connected with two. One was a foul ball; the other was a slow dribbler down to third. Definitely a cool moment for him. I was up next and wasn’t sure if I would even be able to hit a ball. I miss the first couple but stuck with it and eventually connect with a dribbler down to third. I hit two more and eventually stroke a line drive down the first base line. I jump for joy with my fist in the air because it felt so cool to connect with the ball from home plate at Fenway Park. (See my video post on www.facebook.com/ISurvivorLisaDeck)

The day was just incredible. Meeting some of these children today make me want to advocate even more for rare disease and childhood illnesses. I told Jesse’s dad my personal story about being a four-time stroke survivor and having two brain surgeries. His heartfelt well wishes meant so much to me as I knew he understood my past struggles and how much special moments like these meant to me.

I’ve recently noticed something in regards to patients and survivors, like Jesse, his Dad and me. We love life. We love experiences. We cherish each moment probably because we know how precious each one is. Years ago, I probably wouldn’t have pitched, played the field or even batted as I would have been worried about how old and overweight I am. But, yesterday, I put all my self-doubt aside and just lived. I didn’t look my best but I went in with enthusiasm, a smile and just fully embraced the amazing opportunity that we were living.

Zack and I will never forget this day. Thank you to the Genesis foundation for this amazing opportunity and I promise I will pay it forward.