Patient Advocate Transition

Ahot buzz word these days is “pivot.” If the global Covid-19 pandemic has introduced us to one thing it’s “pivot culture.” Expectations no longer dictate reality. There is no script for a global pandemic just as there is no real script for life. While many people felt their first truly significant disconnect between plans and outcomes during the pandemic, others have felt seismic shifts at other times in their lives.

These seismic shifts are more appropriately billed as transitions. Transitions are not just change, but transformative change. Sometimes changes are welcome. Sometimes they are not. Sometimes changes are anticipated. Sometimes they are not. What I’ve learned over four decades is that changes are the bedrock of human existence. How one handles change governs life’s transitions and the evolution of a person.

While I was at Woodlands, my life was charted. I would optimize my time there, participate in sports and hard-core focus on academics. I would get into the competitive college of my dreams, score a solid job, escalate through the ranks, and chip away at glass ceilings. I hoped to meet someone along the way who would measure up to my rigid criteria for a perfect mate. We would have two children, a house in the city in which we would live forever, and nary a care in the world. I was pumping positive things into the universe and surely this would come back to benefit me.

The universe gifted me abundantly. The course I charted was the one I achieved. Sometimes there were hurdles or detours, but I was undeterred. I carried my Woodlands and college experiences with me as I transitioned into adulthood. I harnessed the self-confidence I fostered at Woodlands. Selfassured, I easily negotiated any forks in the road and secured a job and home I loved. I even found my perfect match in my husband. The vision of two kids, house in the city and carefree existence took a slightly different direction. We had our two children, a house in the suburbs, but our lives were far from carefree.

Patient Advocate

Transition

By Brooke Kemper, ’93

The days of early parenthood were halcyon. Despite a difficult pregnancy and pre-term labor, our daughter, Parker, arrived full-term, healthy and vivacious from the day she was born. My second pregnancy followed an identical path with our son, Cole. Despite our best efforts, Cole was born four weeks early. Expecting an uphill battle, Cole beat the odds. The only issues he faced on his birthday were slight jaundice and a little fluid in his ears and lungs. Cole failed his newborn hearing screening, but we were told that it was due to the fluid in his ears and it would resolve in time. We were jubilant. Our family was complete, and we had two beautiful, healthy children.

That jubilation was short-lived. Cole beat the odds again. When the fluid in Cole’s ears didn’t resolve naturally, it had to be surgically drained at 12 weeks. Cole received tubes too….and a shocking diagnosis. He had bilateral severe to profound hearing loss. Our son was deaf.

Thus began the most important transition of my life— from mother to advocate. Life transitioned from scripted to completely unscripted. The transition was abrupt but instinctual.

Cole’s surgeon left us empty-handed with very little explanation, information, or hope. From there, we did all the googling, calling, and praying two parents could do. The day Cole was discharged from his tube surgery at a different hospital, Dr. Dana Suskind, Director of the Pediatric Cochlear Implant Program at University of Chicago, returned a desperate email I sent her. She called me as she was walking up the stairs to her house that evening. Dr. Suskind assured me that Cole was “born in the golden age of hearing.” She assured me that my baby would be absolutely fine and without limits. From that day forward, Dr. Dana (as she’s known to Cole) and the University of Chicago Pediatric Cochlear Implant team held our hands every step of the way as Cole was implanted with Cochlear Implants. Through surgeries, mappings (Cochlear Implant programming) and ear infections, Dr. Dana and her team have been our partners and cheerleaders throughout Cole’s journey. God gave us that gift.

While finding the best surgeon and audiology team was vital, many other things needed to fall into place over the years. There are unyielding insurance companies and rigid Early Intervention procedures. Schedules and career plans shifted to facilitate intensive therapy sessions and audiologist appointments. There are meetings with teachers and coaches and the maintenance of all the Cochlear Implants’ parts and pieces. There is maternal worry in new situations.

Yet all of this is an absolute privilege for me. Why? Because my son is happy, healthy, and filled with joy. Cole is just an all-American, 11-year-old boy. He loves playing sports, watching sports and dreaming of sports. He is a great student and is mainstreamed at an area Catholic school. He spends hours outside swimming, playing basketball, football, and outdoor games with a group of neighborhood pals he sees daily. He also enjoys playing video games with friends, watching Dude Perfect and other sports highlight videos---over and over and over.

One transition led to another. While I’ve spent the last eight years in legal marketing consulting, I recently began a role in Development for a hearing organization. When Cole was a baby and toddler, Alexander Graham Bell Association for Listening & Spoken Language (A.G. Bell) was a tremendous informational resource for us. Cole later received a scholarship to help fund therapy and school. A.G. Bell is an association dedicated to ensuring children have access to listening and spoken language. It provides training to certify therapists to work with deaf and hard of hearing children to achieve spoken language by relying on their technology and environmental cues (lip reading, peer actions). The organization helps educate, train and advocate to enable deaf and hard of hearing children to talk and hear—children just like Cole.

Because A.G. Bell had helped our family, my husband and I wanted to reciprocate. We held annual Kentucky Derby parties to benefit the association. My ties to the association came full circle when I took a position in Development at A.G. Bell. In this role, I support the CEO in A.G. Bell’s efforts to grow its donor base and help expand the association’s international footprint. I joke that they just can’t be rid of our family!

While Cole’s diagnosis was shocking and the journey arduous, it introduced me to truly beautiful life transitions. Through principles instilled in me at Woodlands, I leveraged my faith, self-confidence and call to service to optimize these transitions. I truly am a more evolved and empathetic person and better mother because of the uncharted path. Life may not always take you down the path you dreamed but it’s the path you’re meant to be on. God has had a hand every step of the way, through the thick and the thin. Have faith and be proud of your path.

If you or anyone you know have questions about hearing loss, Cochlear Implants or A.G. Bell, please feel free to reach out to Brooke

BALHOLM@AGBELL.ORG