I want to share with you all the joy that came out of this last weekend at the Boston Marathon. This has been a difficult blog to put together, but I think it important that we all hold on to the goodness of the day.
Let’s start with the day before we left for Boston. My mom ended up getting the flu and was unable to travel with me. Although she was saddened and disappointed beyond belief, she not only insisted that I still go to be a part of this most amazing weekend … she also insisted I see if a friend was able to go with me. I made a call to my gal pal Alexa, and being the most wonderful friend that she, she was not only in … she was excited to be a part of this journey with me (even though I was literally just giving her a few hours notice from when would be departing).
I feel like I should say a little side note here, Steven was not able to make it because he is in Maui for a few days. I will blog on this soon I promise … just feel like this blog going to be pretty lengthy already.
We arrived in Boston and were greeted by the most friendly face … Phil!!! He pulled up at the airport with his Wylder Nation sign hanging in the window and we felt like we were meeting a friend we had known for years. It was a bond. Meeting the rest of his family was amazing and they welcomed us into there city with open arms and showed us all around. Boston is a BEAUTIFUL city and the energy that was there over the weekend with all of the runners walking about was unbelievable.
Saturday night we had a beautiful dinner at Genzyme and it was the first time I got to hug and squeeze people that we have been talking to over the phone for years. It was magical to me. It was an emotional evening where we got to meet all the runners and there patient partner families. We were in a room full of patient advocates for rare disease and family supporters that thrive to make a difference for there children. We also meet one of the runners Kai who went to schools with little Quin ‘s (NPA) mom. SMALL WORLD! After dinner we got to tour genzyme and it is quite a facility. They make magic happen there everyday and produce medicine that save children’s lives. It is easy for many of them to go to work each day as you can imagine.
Bright and shinny Monday morning we were pumped!! With our signs in hand and war-painted faces … Phil picked us up and we headed to the team breakfast. They energy was HIGH and the runners were ready. All the runners wore there WN stickers over there hearts and there was such a since of promise, empowerment and community. We hugged our Rare Team Runners good bye and they were off … ready to run for there Rare Disease partners.
The next time we met up with the Team was just after the half way mile marker. What a euphoric feeling being there. Cheering people on, jumping up and down, watching people pass as they were doing it … running for thing BIGGER than them and reaching goals. As the fist wheelchair “runner” flew by there was not a dry eye … just more of that feel good feeling that you can do ANYTHING you put your mind too. The first woman runner to pass us by looked like a gazelle … she was made for running. We cheered as the father son Holt team (http://www.teamhoyt.com) passed by us and we all stood so proud and so uplifted for many. Alexa and I were on the sidelines painting faces, thinking of Wylder, thinking of Phil and all the goodness of this day. We cheered at clapped on the first timers with their names printed across there jerseys so proud of what there were accomplishing. We bonded with many of the other families and Genzyme staffers and we all soaked in the energy and goodness of this day on our sidelines.
As the Running for Rare Disease team members were coming by we rang cow bells, signs, and there was so much love on this sunny afternoon. The hugs and love that piled as the running team came through to be greeted by there patient partners with there big smiles and hugs was a greater feeling than I could ever put into words. They were doing it … running for Rare Disease … running to make a difference. As the team ran by … many of them would look up for Alexa and I and then tap there WN sticker and point at us. It was magical.
Phil was running up to us with his arms pumping up above his heads and his GREAT pal Shane by his side, both in there Warrior paint grinning war to ear. He was running, running for Wylder. There were no dry eyes in that moment, just gratitude and HOPE. Phil was running on this very special morning for the most important person in my life and it was special. Just incredible. And to top it off Phil chose to run even with pneumonia. Yes, pneumonia. But when he woke up feeling great and knowing Wylder would be on his shoulders he was up for the challenge.
A few hours later as Phil and Shane tackled “heartbreak hill” with ease in there step and the wind at there back … they were thinking and feeling Wylder with every step. High five-ing strangers along the way your songs for Wylder were in there ears and Phil felt no signs of pneumonia, only love, strength and proud-ness for a team he created 6 years ago to do just what they were doing. Theses are the memories of this day I will hold in my heart forever. They are forever implanted in my memory.
As Alexa and I were with Phil’s family heading to meet him at the family area around 2pm … then came the scary. The unthinkable. What is remarkable to me and that ceases to amazing me at times of terror and tragedy is peoples willingness to run TOWARDS to help. There were some patient partners and genzyme staffers less than 200 feel from the explosions, but by the Grace of God everyone in our group was okay. We were just a few blocks away as Alexa and I turned down two tickets to sit in that area just moments earlier. We decided to stay with our new family The Maderia’s and we know now that is because was Wylder looking out for us. In those next few hours there was fear, exhaustion and anger. The fact that an act of terror like this could happen to such good people … many of them running for family members, cancer patients, rare disease and personal accomplishment left us all in disbelief. Although I knew there was no way that Wylder was going to let anything happen to his warrior friend Phil and the team, it was hours before we got to there sweet faces, and we were so grateful when they stepped into the car. Theses acts of terror will not define us. They can scare the shit out of us, but they cannot take away moments like these …
When we returned to our hotel room around 7pm I was reminded by the hundreds upon hundreds of emails, and messages in our in box from you all the love and compassion in this World. Let us remember that
When you run out of optimism … you must always turn to Hope.
The warrior Paint Campaign was out of control AWESOME this last week. I am still downloading photos, but here are a few hundred to start you out with Thank you all for participating in this and showing you love and support.
On our last day in Boston Phil decided to take the day off from work and take Alexa and me to New Hampshire. Away from the city and the chaos and surrounded by the ocean, the salt water air and Wylder James. We reflected on this last day about the euphoric feelings that come out of an event like the Boston Marathon and the amazingness of the Rare Disease Team and there commitment to there patient partners. Although it was a day with sadness it was also a day full of HOPE, goodness of and in people, a reminder of how to be a part of something BIGGER and meaningful. It was an amazing ending to an amazing trip.
Total funds raised on Phil’s sight from All YOU for NORD was $7,700
Money Raised from Online silent Auction was $10,500
Thank you, thank you, Thank you!!!! We will see you next year Boston and the Rare Disease Running Team. You should all be so proud of your accomplishments. We continue to pray for all those affected and the unity of our county.
Alexa: Your friendship enriches my soul.
Phil: Thank you for running for Wylder. It meant so much to us. You are the goodness that we all need to be reminded of in this world … and you are “Wicked fast” (tee hee).
Wylder: I know you loved your run with Phil sweet Wylder. I hope you felt the wind in your hair and the love from all of our hearts. Thank you for being with us all that day in so many ways. xoxo
Posted by April 19, 2013 22 Commentson