Stories Rarely Shared - Ben

 You might already know that The Dolphin Studio is a family business.  John and Primm, my mom and dad, founded the company in 1970 as a side-hustle to their public high school art teaching jobs.

My sisters and I, and now our kids, all participate in some aspect of the company, from designing calendar pages to the actual printing and business development. We are a team of family members with a few chosen friends thrown in to make it all work.

As with any family, we have stories that make us who we are that are rarely shared.  This post is the first in a series about Primm's and John’s eldest grandchild and my firstborn, Benjamin Lucas Paley.

On July 30, 2019, one year to the day after the passing of a dear friend, my son Ben, died of cardiomyopathy. It was also the day his name was added to the list for a heart/lung transplant donor.  He was 26….  

I have been thinking about writing a book about Ben…  or about the 26.686 years  (9745 days) we shared.  Starting is difficult…  and in order to start somewhere, let here, be that place.

Over the coming weeks, I'll be sharing segments of our story as blog posts.  This is a story of resilience and love and magic and music and adventures and heartbreak and grief… and all the blessings that gather in life to carry us through the hardest times.  Ben was born in Rhinebeck, NY on November 23, 1992. I was 26 and in a precarious relationship with his dad that ended nearly exactly one year later. 

We opted to drive the 50 minutes to Rhinebeck as the closer hospital was not a comfortable place.  At my first prenatal appointment, questions asked included if I was married, if I knew who the father of my baby was… and, if so, did I know if he was black or jewish? (!?!)  

I was alone and kinda freaked out and felt alienated, judged and intimidated.  Only years later did it become clear that the nurse’s questions about race pertained to possible birth defects and/or prenatal concerns.  

The practice at Northern Dutchess OBGYN in Rhinebeck, NY was welcoming and kinda the opposite of the Sharon Hospital vibe in 1992.

Dr Verrelli’s practice in Rhinebeck had a 2% C-section rate, encouraged natural childbirth and included two female midwives on staff.  They were awesome.
 
Ben was born after laboring for 45 minutes in the birthing center without a hitch.  No drugs, no stitches, perfect apgar, no issues.

By the time Ben was six months old he had been hospitalized for a week with pneumonia and was diagnosed with Failure To Thrive.  He really didn’t want to eat anything other than breast milk. He had cold after cold and I was nursing him around the clock but he was not gaining weight.

Life consisted of parenting a beautiful new baby boy who didn’t eat, while running my textile recycling business (where I employed 40 people) and getting to frequent pediatric appointments for various observations, weigh-ins and feeding schedule interrogations.  I was obliged to keep a detailed baby feeding journal documenting time of day, food offered and food consumed.

This went on for over two years, during which time Ben had three sets of chest x-rays, twice to address pneumonia, that required hospitalization. The third set was ordered when Ben was mistakenly diagnosed with Spina-Bifida Occulta and we were sent off to The Albany Medical Center for further testing. The doctor in Albany sent us home with confidence that a simple error had been made and the x-ray was perfect.  I remember the sense of relief and the 40th birthday party happening in the doctors’ office for the attending pediatrician that Friday afternoon.

The February after Ben turned two, he and I moved back to my home turf - Great Barrington, MA from Millerton, NY.  We were closer to my sister Sofia and Primm & John, who had just retired and were willing to help as I found my footing as a single mom with 40 employees and a kid who wouldn’t eat and was sick A LOT.

Before we settled in to our little rental house on a dead-end street in Great Barrington, I found a local pediatric practice and made a well-child appointment so Ben could meet the new doctor without the added stress of feeling shitty.

I remember the appointment was on a Monday with a Nurse Practitioner named Lynne Shiels.  I remember her kind voice and that by the time our appointment came up, Ben was coughing a lot and feeling pretty sick - not a well-child.

Lynne knew, without letting on, at that very first appointment that there was something happening for Ben that was unaddressed.  She had me call Ben’s dad from her office (we were no longer a couple) to be sure the two of us could come back with Ben on Wednesday.  She then sent Ben and me home with an antibiotic to start right way in the hope his respiratory infection would be clearly addressed at our Wednesday appointment.

By the end of the day on Wednesday, Ben and I had been in the ER at three hospitals and landed in the pediatric ICU ward at Baystate Medical Center in Springfield, MA in an oxygen tent.

48 hours later we were sent home with my mind blown by their half diagnosis: Ben was seriously sick with pulmonary hypertension, and his prognosis was a life expectancy of 4.   

It was Mother's Day 1995.  

I couldn't take my eyes off Ben.  I watched him sleep.  I thought about him dying in my arms as we slept or as he played in his room.  I thought about not being a mom anymore.  I thought about how to be a good mom and I cried at night when he was in bed. Ben was 2.5.

At Baystate, they had made us an appointment at a more specialized hospital scheduled five days out. We found ourselves at Boston Children’s Hospital rather than their recommended Hartford Hospital because of a magical interaction that I’ll do my best to describe in my next post.