The Dolphin Studio is a family business - if you have been around a while, you probably already know that.
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You might even have known Ben Paley, my son (Crispna here) and John and Primm’s eldest grandchild.
Ben was my best teacher.
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Born after 45 minutes of labor - a healthy 7 lbs 11 oz of pure love that changed my life for the best the moment he took his first breath….
At the age of two and a half, weighing 16 pounds, Ben was finally diagnosed with Cardio-Myopathy and resulting Pulmonary Hypertension.
One of the dozens of doctors who saw him offered an unsolicited estimate that Ben would be likely to live for about 18 months.
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We never went back to that doctor.
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Ben lived for 24 years, 2 months, and 24 days.
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He died the day he made the heart/lung transplant list at Brigham and Women’s Hospital in Boston. . July 30, 2019.
God, we all just miss him.
He was my person. - We had wild adventures ‘growing up’ together and honestly I thought we would die together - probably because I didn’t want to imagine life without our connection.
YIKES!
before I get in too deep,
before I get in too deep,
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I’m climbing out of this grief rabbit hole…
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You want to know what is awesome?
❤️
Ben lived a great life - you would not have known there was anything different about him unless you knew.
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He couldn’t run, or hold his breath for long. He was 4 or 5 when he learned to control his heart rate with deep slow breaths. Ben was a miracle and we found our way through with blessings poured from the Universe.
For starters, Ben showed me a way out of my bad relationship. it was clear that I couldn’t teach him to treat women the way I was being treated….
Then he taught his dad and me to be friends - I mean good friends still today…
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There was this big kid named Shane in third grade when Ben was in first, who gave him piggybacks up the hill on the playground and ran kickball bases for him - Sure wish I knew Shane today - he was a golden Blessing who somehow knew to care for and look out for Ben.
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Lynne, the nurse practitioner, who knew there was something up with Ben the first time she saw him when we moved to Great Barrington and pointed us toward the help we needed.
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The guy behind me in line at the liquor store, when I told my friend Ed, the name of Ben’s diagnosis when I was still learning how to say Cardio-Myopathy. That guy, who Ed and I had never seen before or since told us that he had been diagnosed with Cardio-Myopathy years earlier and he ran 10 miles often. He might have had wings - I didn’t see his back, stunned, Ed, the proprietor and I were trying to collect ourselves in the busy liquor store.
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Rob, John and Cynthia at the music store who sat me down in their back room and dialed the phone to the Boston Children’s heart transplant clinic with the best pediatric cardiologists - in the world - ‘cause they knew them.
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My friend Jen, whose dad was one of the small circle of US based pediatric cardiologists. On visits to Jen’s he answered questions, supported and had cocktails around the campfire with us while Ben roasted marshmallows.
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All of these magical people and moments are really only the very tip of a large and sparkling iceberg that was the physical time Ben and I had together. It was magical and worth the lonely heartbreaking sadness that seeps in when least expected.
The kid was a musician - I gave him his first guitar amp and rock-n-roll strap (it was a kit) for his 7th or 8th birthday.
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He loved it - shredded everyday. He loved listening to pretty much any kind of music, especially Green Day and ACDC. Hell’s Bells!.
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He and his band Starship to Pluto won the Battle of the Bands his senior year of high school. (That’s them the night of the winnings above!)
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When walking hand-in-hand back to the studio after school in his early years, Ben would often confide in me, “Crispina, I think I am the smartest kid in my class”. His observing tone stated what was true.
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We applied, got financial aid and Ben started 4th grade at the local private Quaker Day School. The campus reminded him of Hogwarts. He loved it there, was challenged by his lessons, and made lifelong friends..
I often picked him up in our light blue 1964 VW bug that went like the wind and had no gas gauge.
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Ben was the world's best big brother - adored by his little sisters Lucy and Violet, 13 and 14 years younger than him respectively.
He moved to Boston right after highschool and graduated from Berklee College of Music in 2017. He taught lessons, played guitar and was self-proclaimed Band-Mom for The Lost Collective, a very funky 12 piece hip-hop band with a horn section and growing entourage.
The last year of Ben’s life was focused on playing as many gigs as he could to balance his declining health. He was in and out of the hospital going through a barrage of tests and close calls associated with getting listed for a transplant.
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Ben’s anxiety spiked when the pulmonology team who led the double-transplant charge, forbid him from using cannabis to combat anxiety and as a sleep aid. -
They gave him meds for anxiety that kept him from sleeping and sleeping pills that made him anxious.
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Blood tests taken at each visit to ensure his behavior met their strict parameters were infuriating. Infuriating because Ben had to trust his medical team with his life yet they did not trust him to abide by their rules.
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His lead doctors did not consider his experience successfully medicating with cannabis worthy which resulted in Ben questioning his worthiness.
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When it all became too much, he checked out.
The evening of July 30, 2019 Ben and I had a beautiful text exchange about his worthiness of being a transplant recipient; About the beauty and light he shone on the planet and how we had each other to make the journey through whatever the future held - together.
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While we texted, he was making a lovely dinner, sharing his recipe as he went and trying to deal with the oppressive heat and humidity of the season.
He signed off with this text:
The next day he did not return my texts or calls.
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His dad reached out to me on the morning of August 1, worried that he had not heard from Ben in more than 24 hours.
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I sent his roommates text messages and called his best friend who hopped an uber to check on him.
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When they found him he had been gone for a while. His gourmet dinner plated up on the amp in his room with the AC cranked.
I called my husband who was on an adventure in California with my daughter Lucy, then age 13. They got on the next flight home.
As soon as it was clear that no ER or transplant clinic could change things, my sister drove me to Boston with my niece, Ben’s dad and step mom.
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We arrived at Ben's apartment full of his friends stunned and sad gathered there to support each other and us. Seeing him with dried bubbles of saliva on his cold gray cheeks broke my heart into a thousand shards and left a hole nine miles wide.
Yikes! Grief rabbit hole...
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To ease the pain and celebrate the magic of my sweet son. we set up a scholarship in Ben’s name that has been steadily growing over the five years since he died (exactly one year to the day after my good friend Bridget died at 58 7/30/18)
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One day I see the Ben Paley Scholarship award an annual scholarship to a musically inclined student for a full 4 year scholarship to music school. We have a long way to go before we get there but with your help and our community of support, that day will come..
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Here’s how you can help:
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The 2024 Dolphin Studio Fundraiser for the Ben Paley Scholarship
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- They are for sale in our shop for the month of August 2024.
- $34 from each calendar sold will be donated to Ben’s Scholarship Fund.
- $34 from each calendar sold will be donated to Ben’s Scholarship Fund.
- Purchasers get their ‘name in the hat’ to win calendars for gifting - one entry for each Golden Cover calendar bought this month.
- Winners will be drawn on September 1, 2024.
- First prize wins three 2025 Dolphin Studio Calendars
- Second prize wins two 2025 Dolphin Studio Calendars
and
- Third prize wins one Dolphin Studio Calendar.
Free shipping to the continental USA is included in the winnings but winners are responsible for international shipping charges.
Our whole family feels deep gratitude and thanks to all who have helped build the Ben Paley Scholarship Fund to where it is today. I feel blessed by each donation with a new opportunity to remember Ben.
Let’s celebrate the magic music and love Ben shared in his short and beautiful life by continuing to build his legacy that will continue to support musicians in need in perpetuity.
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As Ben would say:
Pick up your guitar and play
Just like yesterday
Consume Consciously
Give that last 5%
Begin again
Treat yourself lovingly
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Here is a link to get your limited edition GOLDEN COVER 2025 Dolphin Studio Calendar - $34 from each sale goes to support the scholarship and build our annual award.
2 comments
Crispina ffrench
Ana, Thanks for your kind comment. The gift that precarious health gives those trusted loved people who know the details, strife and struggle is deep beautiful unconditional love and forever connection. You know what I mean. Hugs and deep healing breaths to you and your best friend.
ana Margaret johnsen
with tears in my eyes I thank you for sharing. my best friend has Primary Pulmonary Hypertension and so this story hits very close to my heart. I hear you, I feel your pain but also your love for your beautiful boy. may your heart continue to grow stronger so you can continue to share his story 🩵
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