The Running for Rare Diseases team is recovering from a very special (and unexpectedly warm) Boston Marathon.Â This was my first marathon and boy was it a memorable one!Â This video slideshow contains highlights of Marathon Monday taken by Running for Rare Diseases team photographer David Parnes:
The Saturday before the marathon we had our team dinner.Â It was a wonderful opportunity for the runners and the patient communities to connect.Â My 9 year old patient partner Shauna got up in front of a room of 140 people to give a speech.Â She aspires to be a meteorologist when she grows up and I think she’s a natural public speaker.Â She did a great job and I am so proud of her.Â My husband and I were so moved by the stories we heard that night and I carried them with me to my race on Monday.
On the bus ride to Hopkinton our team leader Phil gave us two pieces of advice.Â #1:Â Stick to the plan.Â Don’t get caught up in the excitement and go out to fast, as tempting as that may be.Â #2:Â Take the time to take as much of it in as we can, high five every kid on the side of the road and when we get to the part of the course where the crowds thicken yell “Feed Me Baby!” and use their energy to carry us through those last few miles to make the last 10K our best 10K.
Finally we arrived in Hopkinton and lined up at the start.Â It was go time!Â The day was unexpectedly warm, which slowed many of us on the team down.Â We were used to training in 40F weather with our winter gear on, not 75F and shorts and tank tops!Â With the bright sunshine I was glad my brother in law insisted I take the hat he wore in last year’s marathon to shade me from the glare.Â That hat has now crossed the Boston finish line twice.Â I knew looking at my pacing wristband that I was falling behind “the plan” but I decided to throw that out the window and make my first marathon a memorable and enjoyable one.Â What got me through the first half was my excitement to see over 100 supporters of the Running for Rare Diseases team at mile 14, including my patient partner family, my sister and my niece.Â Then I was looking forward to seeing my husband, children and the rest of my family at mile 18.Â Then I was looking forward to being done, having a shower and a pizza.Â I finished about 45 minutes behind my goal time, but I finished with a smile on my face.Â That last 10K may not have been my fastest, it was definitely my best.
26.2 miles is a long time to be alone with your thoughts (in my case about 6 hours).Â I drew strength from those patient partner stories, especially of parents who’d lost their children to rare disorders or who knew their time with their loved ones may be extremely limited.Â If they could find it in themselves to go on when all seems lost, surely I could too. Â We talk a lot on the team about how living with a rare disorder is like running a lifelong marathon.Â This year especially it really rang true as we looked to find hope and positivity in something so senseless and devastating, and try to find meaningful answers to the question “Why did this happen to us?”.Â In my marathon effort I tried to take a lesson from my patient partner family the Sperous and live for the moment, in the present, to make it count and to pack it with as much fun as much as possible.Â Â
I feel so honored and fortunate to have been chosen to participate on this team. This “exclusive club” where membership is not for the weak or uncommitted.Â To echo the sentiments in Pat’s 20 Mile Odyssey post, all of this has been wonderful.Â The fundraisers, the brunches, the training runs, Rare Disease Day, our team dinner.Â But the best part, the part that all the rest doesn’t hold a candle to, has been the relationship I have built with the Sperou family.Â It has been my privilege to bring attention and awareness to the Rothmund-Thomson Syndrome community.Â This started out as a way for me to support them, but in the end they supported me.
Shauna handing out water at mile 14
Shauna and my niece Madalyn with their signs
Making my approach at mile 14