The heart, our capable and vigorous organ pumps our life force throughout our body. It pumps while we wake, slumber, worry, laugh, hug, quarrel, growl at traffic, touch a lover’s hand, sip hot coffee, savor a mint julep, or a tangy sassy margarita.
As Christmas approaches, our hearts are focused on family, friends, and holiday preparations, while the world makes less sense every day. And, for those of us supporting family members with different abilities and additional support needs, this time of year can be overwhelming. I know.
Last month, the Louisiana Developmental Disabilities Council asked me to do the keynote for their 2019 Conference on Navigating the System through the Life Span. The request allowed me to reflect on how Mikelle and I traversed the tight wire of a well-meaning but often disjointed and complicated system that struggles to fulfill its mission.
Many of you know of my daughter, Mikelle, who has exceptional abilities. She is an ace at driving her wheelchair except when she runs into a wall, takes out a corner of drywall, or runs over someone’s foot. She is, by far, the best salesperson I have ever met. She entices people at the coffee shop, the grocery store, sporting events, or folks picnicking in the park to purchase her now-famous bracelets using her digital voice and her heartwarming and persistent smile. She has been podcasting for almost a year now and is perhaps the first non-verbal person to host a podcast. Her following grows daily. Mikelle has provided me many opportunities to grow over the last thirty-six years.
In preparing for the Louisiana conference presentation, I sifted through old photos of Mikelle’s arrival from Korea as a three-month-old infant. Wheels Down, Hope Up, and Doors Open — life Changes.
I knew the instant I saw her sweet chubby face with a dusting of dark hair and those almond-shaped eyes, normal would no longer be normal. With her diagnosis of cerebral palsy, societal norms no longer applied to us in many ways. Normal was lost, but freedom was found.
At the time, I realized her needs were many, and support was scarce—or so I thought.
Thirty-six years later, meandering down the timeline of our lives, I realized how incredibly grateful I am for Mikelle, who has been my most excellent teacher. Her lessons are diverse, impacting my heart, my soul, and all I have come to understand about life. She taught me the Future is What You Decide. Expect a good life and greet the day with excitement. Preparation. Patience. Persistence. Protection.
As I write this blog, I am thinking of the mothers and fathers, the aunts and uncles, the sisters and brothers whose hearts beat with love for a family member who is also exceptionally gifted, differently-abled, profoundly powerful and courageous. Living outside “the typical” challenges us to our core, often forcing growth in ways we would not have chosen.
Even as our hearts filled with doubt and fear, our blessed heart keeps pumping out love. Our hearts grow, we grow, and our gifts multiply.
My presentation went on to describe the eleven years of fundraising because our insurance would not cover anything related to her disability. At the time, we made too much money for her to receive Medicaid. It was in the days before the Medicaid Waivers.
I learned to become a fundraising warrior seeking funds for wheelchairs, communication devices, physical, occupational- and speech therapists. I discovered strangers, friends, and family would literally climb a mountain for Mikelle. A random encounter with a house painter leads to Mikelle being carried up a 14,000-foot mountain peak in a backpack by him and surrounded by his friends all raising money for each foot he climbed. He paid off Mikelle’s therapy bills and gave Mikelle a view of the world from a rocky mountain top. The air was clear and crisp. Mikelle saw the world around her for a hundred miles or more from the top of that mountain. Celebrating her journey to the top were people who cared for and supported her. Together, Mikelle and her newfound friends were shining beautiful that day.
The day when Mikelle first experienced her mobility in a brand new wheelchair at the age of three, television cameras captured her first drive. The local news reporter interviewed my close friend and former college roommate. She had secretly organized a fundraising drive with her friends and church members to purchase grocery store gift certificates. A portion of each sale went into a fund where she squirreled away the profits until she had several thousand dollars. She needed more. We needed more. Then, she reached out to a church foundation to contribute. Easter Seals of Colorado added the remainder of funds. Mikelle now had the freedom she had never known. Such a gift to all of us.
I remember the elementary school principal, Mr. Modica, whose lion-hearted approach to education meant all students deserved a regular education. When we needed financial support for her first digital communication system, he put a note in the school newspaper requesting information on an organization that might help us. Mr. Modica called me a week later, telling me he had a check for $2500 from an anonymous family whose son was in Mikelle’s second-grade classroom. The family knew the importance of technology and were grateful Mikelle was in their son’s class as she taught him about diversity and inclusion.
The middle and high school years taught me to negotiate with a much tougher crowd. I sharpened my skills, learning particular stealth to navigating the system and unlocking hidden resources, becoming a bit of a “Ninja Navigator.” I intended to help teachers become better educators, to help administrators find money and resources they didn’t know existed. Our efforts included assisting the high school in replacing their forty-year-old elevator. Mikelle needed to do her navigation through the endless school corridors spread over two floors by not raiding the Principal’s meager budget but by dipping into the capital expenditure budget from the school district under the accommodations afforded by the American’s with Disabilities Act passed in 1990. The new elevator benefited the entire school, not just Mikelle, and did for years to come.
In Mikelle’s last year of high school, her transition team met for two hours monthly to help her reach her goals of becoming a presenter just like her mom. Everyone’s efforts paid off when Mikelle graduated “Outstanding Senior.” I was overwhelmed by gratitude.
The list goes on and on. Ian, the barista at Starbucks, helped us design a plan for Mikelle’s adult life and community. Fifteen years later, Ian is still a big part of our lives.
Judy and Henry Barclay and Lisa Manly flew out from Alabama to Denver to facilitate Mikelle’s H.O.P.E. Team meeting. Mikelle had four big goals. Within eight months, she had accomplished three out of four of them.
Jerome, Mikelle’s high school friend, and former athlete became a dear friend. He has always seen her beauty, understood her frustration, held her hand, teased her, and just two weeks ago was over for a spaghetti dinner.
All of these relationships continue after all these years. The recesses of my heart light up with wonder when I reflect upon this unexpected journey with Mikelle. I remember cradling her in my arms, tears running down my cheeks as she slept so peacefully. I worried about her future, as most parents do. I had dreams for her. I have to say, reality has exceeded my hopes in so many ways. I have learned that if I doubt anything, to doubt my own limits.
My retrospective journey surprised me as I realized she was truly a pioneer. Mikelle represents the first generation of young people who received a regular education under the Individual Education Act (IDEA) of 1974. The first generation in human history.
Most importantly, her life has mattered. It has been meaningful, robust, and has lived up to her middle name, Mee Jeong, which translates to “Shining Beautiful.”
My focus on gratitude is a gift for all of us. It is a reminder to find the little things that are successes and beautiful moments and not let the challenges darken the beauty of our experiences as parents of amazing people.
Let me share one more thing with you as we enter the holiday season. Gratitude is good for our hearts. Check this out. https://greatergood.berkeley.edu/article/item/is_gratitude_good_for_your_health
May your big hearts be blessed this holiday season.
Katherine and Mikelle.