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A Mother’s Love

Most of us will never experience the heartache, or the unending love, that comes with parenting a child with profound disabilities.

Yet sometimes it’s the unplanned journey which shows us who we really are, and how we will face the challenges set before us.

Seven minutes.

It’s a span of time which, for most of us, holds little meaning in our daily rush from one thing to the next.

For Terri Olsen and her husband Bob, seven minutes represents the ocean of time spent waiting for their little one to draw his first breath. In just seven minutes, their lives were changed beyond anything they could have imagined.

Bob and Terri Olsen’s son Ryan, nearly two years old, was a bright boy who excelled at nearly everything he touched, and their hearts filled with joy when they realized they were expecting a second. Would he be a peaceful soul who loves books and music like Ryan? Or would he run headstrong into the wind and dive into adventure? Either way, they couldn’t wait to get to know him.

On November 11, 1979, Terri was awakened in the night to what she readily recognized as the beginning pains of labor. Hours later, her physician determined the baby was in distress and needed assistance to make it out into the world. What happened next set her life, and the life of her family, toward a very different path than the one they had expected, longed for, and prayed for.

When he finally emerged into the bright lights of the birthing room, little Brent was lifeless. His skin was blue. He wasn’t breathing. And, with every minute that ticked by, the hope for a normal life began to evaporate.

Without oxygen, even for just a few minutes, the brain begins to die. And in those first seven minutes of Brent’s life, the irreversible damage was done. Destined to live a life of dependency, he would never walk, talk, or develop beyond infancy for the 27 years he was with us on this earth.

Looking Back

Looking back, Terri shares that Brent – with his “loving eyes and heart of gold” – became her life. “He couldn’t verbally communicate,” she shares, “but his eyes would talk to me.”

Those early years were a struggle. Terri remembers big brother Ryan sitting in front of the television, watching 4-5 hours of Sesame Street at a stretch so she could focus on caring for Brent. Bob was there for her but spent most of his time working, so she played the role of 24/7 caregiver. Although Bob urged her to bring in help, it was difficult to find someone who could do the job well, and so Terri shouldered it without complaint. Brent was, in her words, her “sweet baby”.

When Brent was five, a third son came along. Chris was an adventurous spirit. “Ornery,” his mom shares with a smile. It wasn’t easy, but the family was happy. Ryan and Chris loved their brother, and oh did he love them. Although being a sibling to a child with special needs could be challenging, Ryan and Chris looked after Brent and protected him. They were good to him, and they adored him.

Life on Hold

In 2002, after two decades of putting their life on hold, Terri finally relented to a special request for a getaway before their youngest graduated high school. She found a caregiver for Brent and excitedly planned for a cruise with Bob, Chris, and family friends. It was their first trip but, she promised Bob, it would be the first of many.

At a stop in St. Thomas, she and Bob were excited to hike up a mountain to enjoy the view. After climbing a short distance, Terri was ready to rest but Bob pushed on, and so she stopped and waited for him to return. He never did. The next morning, his lifeless body was found leaning against a tree. He had succumbed to heat stroke, and Terri was unexpectedly a single mother.

A Mother’s Love

Ryan married in 2000 and Chris was off to college. From there it was just Terri and Brent. Life, as it has a habit of doing, carried on until June of 2006, when Brent became seriously ill. In the Intensive Care Unit (ICU) for 33 days, he developed life-threatening pneumonia along with other life-threatening infections. Hospital staff told Terri he wouldn’t survive and suggested she prepare herself for the end. She could see he was in pain and so made the heart-wrenching decision to take him off all machines – including oxygen – and let his body shut down.

The Kansas City Hospice House had opened just a few months earlier, and hospital staff told Terri there was no better place to take her son. Surprisingly, after ten days there, Brent showed no further signs of decline. Terri took him home where Kansas City Hospice caregivers helped them. Nearly eight months later, Brent once again began to decline and at just 27 years old he peacefully died, surrounded by his loving family.

“The Kansas City Hospice caregivers were amazing,” Terri shares. When Brent was at home, she was thankful that she could call and his doctor or nurse would be right over to help. Terri speaks of the peace and comfort in knowing he was being cared for in his last moments by such a compassionate team of professionals. “My mom was there, my dad was there, Ryan was there. It was just… comfortable.”

It Was a Life She Didn’t Choose

It was a life she didn’t choose, but in many ways parenting a child with such profound disabilities gave her the strength and compassion to be who she is today. After Brent’s death, Terri – for the first time in decades – wondered what she would do next. As with many family caregivers, her direction was chosen for her for so long that it was a challenge to step back and consider what she wanted for herself.

One thing, however, was clear. Terri would never stop advocating for her son or celebrating his life.

Giving Back

After Brent’s death, one of Terri’s first stops was to offer a gift in support of the Kansas City Hospice House. To this day, visitors are immediately welcomed with a sign celebrating Brent. And in the years since, Terri has never forgotten to celebrate his birthday with a gift in his memory.

Some of those gifts she describes as “silly” – a gift of $1,111 for his 11/11/11 birthday, for example – in memory of the boy with the heart of gold. Yet all are meaningful, celebrating his life and supporting the compassionate care offered by Kansas City Hospice to other families.

This year, Terri wishes to celebrate with us once again. November marks what would have been Brent’s 40th birthday, and in 2020 Kansas City Hospice will be celebrating our 40th year of providing care to the Kansas City community.

In celebration of Brent, and the compassionate care of Kansas City Hospice, Terri graciously asks you to join with her in remembering his life and in celebrating the people you hold dear.

For every dollar you give to the “Heart of Gold” giving campaign, whether returned in the enclosed envelope or offered online at KCHospice.org/HeartOfGold, Terri will match your dollar with another, up to $40,000! This will effectively double your gift and allow Kansas City Hospice to meet twice the need!

Celebrate Each Moment

Terri’s life has been one she never could have imagined, but she has learned to appreciate the little things and to celebrate each moment. There is joy evident in her, even now, and she loves to give back because – as she puts it – “she can”. Because she knows that although her life was not easy, she is fortunate. She had the resources and the ability to take care of Brent, but knows many other families are facing financial challenges along with the challenge of caring for their loved ones with serious illness.

She understands that Kansas City Hospice cares for members of our community regardless of their age, disease, disability or illness, and it’s because of her, and you, and donors throughout our community, that no one is turned away because they do not have resources to pay.

For this, we thank you, and hope you will consider a generous gift to the Kansas City Hospice “Heart of Gold” giving campaign as we celebrate the life of Brent, the love of a mother, and the joyful remembrance of those we hold forever in our hearts.

Gratefully,

David S. Wiley
President & CEO

p.s. Don’t forget, each dollar you give to the Heart of Gold giving campaign will be matched dollar for dollar up to $40,000! Please send your gift in the enclosed pre-paid envelope, or go to KCHospice.org/HeartOfGold

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