Monday, June 26, 2017

Welcome to Soul Shine Celebration

Welcome to Soul Shine. Thank you for being here. I’m so happy that you all could make it, it means so much to me. It is such a beautiful day. I hope everybody is having a good time. I am living every day to the fullest and I hope you are too. That’s why we are here, to help each other, have fun with each other, enjoy each other, to have joy with one another. Life is too short. Let’s party!

 That was my speech at Soul Shine Celebration 2017. Jackie spoke before me and she gave quite a speech. Jackie was a rock star. I made my speech with my electronic voice. People were shouting, “We love you Mark!” and “Fuck ALS!.”  We didn’t speak until 8:30 PM, but the party began at 5:00 PM and ended around 10:30PM. I was there until the very end. Jackie and I are always the last to leave a party.

Everybody was there! All my brothers, nieces, nephews, all of Jackie’s siblings, even my mother in law, some aunts, uncles and a very special cousin who surprised me along with my friends and the Big Sky community. Jackie and I danced to the beautiful voice of Lauren Jackson. Jackie almost ran over Zion, Jamie’s two-year-old son with my power chair but only hit his head with my eye gaze computer. She almost threw me out of my power chair. But we danced and danced, and the rest of our family, friends and the community joined us.

Eventually I got tired and went back to the family tent where I had a safe place to rest set up. Candice was by my side all night. I rested there until it was time for Jackie and me to speak. After our speech, I went back to my spot in the family tent. Somehow a line formed to visit with me. I held court the rest of the night, one set of visitors at a time. Next year we should charge a fee to see me, like a kissing booth.

The evening was magnificent. There was so much more to the evening. I didn’t get to see any of the carnival nor the photo booth. I heard about it all from my relatives, so I got them to write about it:

“Seeing my mom and dad on stage talking to the entire community of Big Sky was the most touching moment of my life. After my dad’s speech the crowd was so pumped that the roar brought tears to me, and most everyone else’s eyes. I can safely say that everyone felt the love all night long. Love you so much dad. You are an inspiration to us all.” –Andrew Robin

“Not surprisingly, Soul Shine far exceeded all expectations.  We were embraced by the love of Mark & Jackie’s family & friends and the entire Big Sky community. People came in droves from all over and the deep emotions bound us together.  That comforting warmth will stay with us forever. My brother’s love of life is only exceeded by the love that everyone has given back to him. All our love to our extended Robin/Roberts family and the amazing Big Sky community with gratitude for all their support, with extra kisses to the special angels who make everything possible.”  - Cyndy & Harold Robin

“In an attempt to describe Soul Shine, the first word that comes to mind is ‘profound.’ The amount of love and generosity that poured in from the Big Sky community for the Robin/Roberts family – profound. The support offered by the local and national ALS organizations, emotionally & physically – profound. The music, the food, the energy and atmosphere of Soul Shine – profound. However, the most memorable, the most significant, and the most profound aspect of Soul Shine was witnessing Mark’s unwavering patience and strength; he has given us the gift of humility, and we are all better for it. Soul Shine was the perfect opportunity for all the souls of Big Sky to come together, and appreciate the beauty of life. But, of all the souls present, Mark’s shined the brightest.” – Erin Johnston (Andrew’s girlfriend)

“I am not great at keeping secrets, but I managed to surprise Mark and Jackie by showing up at Soul Shine unexpectedly. Mark’s smile and emotion when he saw me in his living room filled me with enough joy and light to last the year. Mark never fails to make me feel loved, adored, and grateful to belong to this family. Mark has always lived with his heart on his sleeve. His generosity and openness make the people around him feel more alive. This has only become more true in the last year. It is incredibly powerful to witness the love and support that Mark and Jackie’s friends, family, and Big Sky community have shown them, but it is no surprise - it is a reflection of the love and support they have offered to their many, many loved ones over the years. I love you, Mark.” –Ruthie Ballenzweig (Mark’s cousin)

Dear Mark,
We are thankful to you and Jackie for bringing us all together for the Soul Shine celebration.  It has been a wonderful, beautiful experience!  We enjoyed the concert, spending time with family, meeting your friends and exploring the beauty of Big Sky. We have soaked in the warm Montana sunshine (Shelby especially enjoyed the respite from NYC).  We actually got ourselves soaked while navigating the rapids of the Gallatin River (a first for Clay), and it was totally thrilling.  We traversed the rocky mountain terrain of Lava Lake (and witnessed Jacob almost kill himself at least 5 times).  The cousins enjoyed bonding in the “Lincoln-log house”, and it was so special since it has been a pretty long time since we were all together.  This has been such an amazing experience and we are so overwhelmed with happiness that we got to spend this time with you!
All our love, Ben, Stacy, Clay, Shelby and Jacob Robin

This weekend was beyond words. 
·      Over hearing Jacob tell Stacy he doesn’t want to leave Montana.
·      Watching Clay smile while he beat the Class 4 rapids on the Mad Mile.
·      Shelby and Jacob giggling uncontrollably with her cousins late at night when most of the grownups had gone to bed.
·      The kids discovering that Blue Grass is good music while dancing the night away at Soul Shine.
·      You and I watching the last few innings of the Mets game when I was supposed to be helping you nap.
I am so happy that Stacy, the kids and I were able to share this with the Montana cousins.
Love ya Bro,
Ben Robin

“All of the Robin Cousins (tweet tweet) came together this week for the first time in almost four years to reunite. More importantly, this week was dedicated to showing our unconditional love for each other and our entire family, which came quite easily. We are both overwhelmed with many emotions, but are so grateful to have been able to spend all of this time with everyone here. The connection and spirit we have felt with our family this past week is indescribable. After a week full of smiles and laughter in our home away from home, the time we had this week will never be forgotten.” Love, Matthew and Alyssa Robin

1 comment:

  1. Mark my friend,

    It's great to read your blogs and keep up with all that is going on with you and the family, your blogs have me laughing, smiling and gigling out loud. It really is great to see you taking this f**king illness by the horns and shaking it like a bi**h..... f**k ALS !!!

    You're hell of a man Mark, we are cheering you from the side lines mate and we send you our love, hugs and best wishes to you.

    Your friends the Gale clan xxxx