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Life with Jake: A father’s story about his son

Lisa Gavon
R-C Alpine Bureau

He nearly died during birth and was later diagnosed with cerebral palsy. Jake Wilkins cannot speak and relies on a wheelchair to get around.

Jake’s father is Kirby Wilkins, and they divide their time between their Alpine County cabin and their house in Menlo Park, Calif. Kirby became a father at 58 and his honest and insightful book Life with Jake illuminates the emotions and demands of having a high-risk, special needs child.

Jake has reshaped Kirby’s life, as this poem from his book illustrates.

Sometimes he sees me coming

and his entire face is transformed:

from a lifted lip of

acknowledgement,

to a droll and crooked twinkle,

to a full-wattage smile.

And just that fast, my own face

becomes a twitching mess of wet

clay

in the hands of a master

The endless rounds of tests, possible diagnoses, treatments, and surgeries have been heart-wrenching for both Kirby and his ex-wife.

The stays in hospitals and physical therapies have been especially demanding. The family even had to seek the expertise of doctors on the east coast: a trial in itself just getting there.

Since he cannot talk, Jake has had to use adaptive speaking devices. His mobility includes a specially designed bike that has taken Jake on the roads and trails of Alpine County. In earlier years he traveled in a back pack, and one of their adventurous excursions in Pleasant Valley is chronicled in Kirby’s book.

Kirby taught English and creative writing for 31 years at Cabrillo College in Santa Cruz. He is also the author of a collection of short stories, Vanishing (1984). His volume about Alaska is titled King Season (1985) and Quantum Web (1990) is a complex tale of mystery, spirituality, and physics. All are available on Amazon.

Jake has attended a variety of schools including The Bridge School, well-known for it’s fundraising concerts performed by Neil Young and other musicians.

From elementary school through high school, in addition to special classes, Jake was in inclusive, regular classrooms using an IEP (Individualized Educational Program). Jake’s assistance dog, Beatrice accompanied him at school, at home, and around Alpine County on bike rides until her death in 2011. Jake’s shorthand for his loss is typing ”Bea sad.”

Like any parent, Kirby is looking ahead and thinking about what Jake is going to do as gets older.

Kirby and Jake’s mother have worked with 10 other Bay Area families to form a non-profit alliance, purchasing seven acres that will become a working farm and affordable housing.

The project is called “Constanoa Commons.” The idea is to create a model for dignified and independent living for adults with special needs.

Cottages will be available to people with and without disabilities, making a neighborhood supportive to the unique nature of every person there and continuing long after the parents are gone.

The small moments gathered in this book reveal a deepening experience for father and son. The stories and poems are warm and funny, painful and indignant, healing and comforting.

They contain both ends of the spectrum, and show a man and his son finding a precarious balance in a challenging world. Kirby’s Life with Jake paints a portrait of unconditional love and devotion.

When faced with a tough diagnosis in your child or other loved one, it is easy to despair. It is important to remember that many things that are painful or look like a disaster can actually turn out to be wonderful.