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
Mark,
This weekend was beyond words.
Highlights:
·
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
