Peter’s Story

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Peter’s Story

By Larry & Betsy Grotte

Peter was born in 1995. We were very excited and envisioned wondrous new adventures with our son Peter...this was an amazing new chapter opening up in the life of the Grotte family.

Almost eight months passed with Peter displaying normal development in all aspects of his young life; first utterances of ‘Mom’ and attempts at walking; he was a very happy, healthy and curious little boy.

Early on the morning of May 21, 1996, we awoke to Peter’s screams and found he was running a 105º fever and noticed his eyes looked strange. We called the after-hours pediatrician and she assessed that Peter was likely suffering from a viral infection and possible eye infection. She advised us to keep him hydrated, cool and check in later in the day with his pediatrician.

A few more hours passed and we noticed that Peter’s pupils had fully dilated and he was non-responsive. Luckily, we were very close to Sequoia Hospital so we gathered Peter up and practically flew to the hospital faster than any 911 responders could have. Peter’s vitals started dropping rapidly and in minutes he went into respiratory arrest and a coma. The emergency room physicians applied extensive life-saving measures while not knowing the cause of his illness. He was soon transferred to Lucile Packard Children’s Hospital and placed in a double-isolation room for precautionary measures. Peter was later diagnosed with a virulent form of bacterial meningitis infecting every lobe of his brain...he was described as the sickest child in the hospital.

Life for our family was forever changed...

After many days of testing and attempts to revive Peter who was being kept alive by medicines, machines and prayers by hundreds of concerned people including the medical staff, we were informed by the doctors “We have done everything possible to revive Peter but we sadly advise that you must prepare yourselves for his passing...he will not be leaving this hospital.”

Blessing and miracles do happen...

Truly within minutes of the doctors’ shocking prognosis, Peter began to show small signs of resisting against his respirator and began to slowly emerge from the coma. Within days, the life-supporting machines were removed and he continued to improve. We felt so blessed to have our Peter back, we began again to look toward the future although still uncertain about what was in store for us.

When Peter stabilized, he was evaluated with many MRI scans and it was shown he had severe brain damage affecting almost every aspect of his brain although it was unknown what his physical and cognitive abilities would be in the future.

As time passes...what does peace of mind look like...

Peter’s illness has left him with cerebral palsy, eyesight limitations, cognitive and learning delays and a seizure disorder. He is non-verbal and walks in a walker or uses a wheel chair for longer distances. We must say that he is by far one of the happiest people we know!

He absolutely loves swimming, reading books, balloons, horseback riding, his Welsh Corgi “brother” Tucker and Sesame Street’s “Sing Yourself Silly” video. Peter is a very sociable and popular young man and he has made many friends at his special school, The Avalon Academy.

Peter will soon complete his formal education and enter the world of adult day programs focused on his particular interests and capabilities. He is likely to live a long and healthy life although as an individual highly dependent on many others for his life-span care.

Realizing that we had to plan for Peter’s future in a much different way than we originally envisioned, we embarked upon a ten-year journey of discovery. We talked with other parents in similar situations, visited and explored various models such as co-housing, group homes, intentional communities and other models throughout the U.S. and abroad. We approached this process with open eyes, minds and hearts and largely felt disappointed at the short-falls we found in many of these models. This overarching finding led us to consider developing our own unique model for a residential community.

Working on this important life-changing project to benefit not only our Peter, but other “Peters” and “Marys” and their families, has brought a sense of great purpose and focus into our lives. We have been truly blessed to find other families such as Irma Velasquez, Sherman Chan and their wonderful son Aaron who have joined with us in our mission.

Realizing our vision by bringing the Rident Park community into existence will provide us with a great sense of well-being and peace of mind; we will feel complete and fulfilled that we did everything within our power and resources to provide a safe, happy and fruitful life for our beautiful little boy Peter and many others.

As we reflect on our journey to this juncture, and then look ahead to what our future will bring, we felt the following quote by Jonathan Lockwood Huie serves as a wonderful framework that amply describes how we have approached our life-challenge.

Find a time and place of solitude. Look into the distance, and into the future. Visualize the tomorrow you are going to build—and begin to build that tomorrow, today.
—Jonathan Lockwood Huie

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