“I am the Captain of My Soul” ~ A Tribute to Neil

Last updated on: June 19, 2016 at 11:36 am by Gerard A. Murphy

“I am the Captain of My Soul” ~ A Tribute to Neil 2016-06-19T11:36:07-04:00 Gerard A. Murphy

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G & N

It matters not how strait the gate, How charged with punishments the scroll, I am the master of my fate, I am the captain of my soul. (Invictus: Henley)

When Emmet and Martina Crawford started a family, they were not to know M & E that, at 18 months, their first-born son Neil would be diagnosed with neurofibromatosis (a congenital bone disease that affects 1 in 3000 newborns). They were told that, as a result of this, there was a 5% chance of his developing a cancerous growth and possible curvature of the spine – he developed both!

At age 3 Neil was diagnosed with a tumor on his bladder; it was surgically removed with chemo and radiotherapy to follow. But a series of complications ensued: many of which seriously compromised his chance of surviving.

A defining and culminating moment in this harrowing series of events, was when one night – still critically ill and on a ventilator – the nurses disengaged him from the machine; placed him in his Martina’s arms; and wrote on his medical chart: “Parents told child will die.” Ambulance and funeral arrangements were made – but Neil had other ideas . .

Life & Mission

Neil rallied and somehow pulled through . . He was four when finally discharged from a full year of hospitalization; Martina (expecting her second child at the time) practically lived at the hospital for that entire year.

Neil struggled through life but expanded his gifts and talents in many ways. With limited mobility, recurring chest infections, and digestion issues, he didn’t have it easy over the years. But this didn’t stop him attending a special school and later completing several certified courses at the local community college.

Apple Inc Addict

Neil kept up with all the latest Apple Inc devices. As soon as a new one was advertised, he had it pre-ordered immediately. He was a staple, secure figure in the Crawford home. Between downloading music, Facebook bantering, and text messaging, he stayed up to the wee hours on a regular basis. He was a country music show addict as well; never missing the latest gig that came to town.

Neil had a beautiful, quiet demeanor. Sure he got agitated on the odd occasion; but they were the exception. As his 6 siblings circled around him immersed in their teenage ways, he took all in his stride. He was not one to comment on or complain about his fragile health and disabilities.

Mission

Neil Neil’s mission was one of presence in the family home. He was gentle, had a mirthful sense of humor, and was simply always there . . like a family air traffic controller on his kitchen bar stool.

Neil, at age 26, passed away in his sleep just a few days ago. His legacy of loving-kindness, gentleness, and peaceful acceptance of the vagaries and blows of life, will remain fondly in the hearts of all those he blessed by simply being the unassuming self that he was until the end.

His soul, in the end, decided its own destiny – a resounding testament to the irrepressiblity of the human spirit.

Neil was my first nephew. He inspired me to compose two songs for him over his lifetime. The first was a lullaby when he was a baby; the second a soft, melodic piece I composed when he was much older. Regrettably, I’ve forgotten the lyrics to the latter; but I recall these four lines from the lullaby:

Neil, baby Neil I marvel at the miracle of you . . Now as I lay you down to sleep, I give you to the angels to keep . .

Now dear friend may you blissfully know the company of these angels as they guide you on all the spiritual adventures that await your precious soul.

I love you!

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