This is a story about perseverance and sacrifice, and the superpower of hope. You may want to grab some tissues for this one. It all came about because one woman knew the heart of what the PBS News Hour noted, “If all grandparents walked away and said, ‘we can’t do it,’ there would be no homes for these kids. Sheila found herself suddenly among the 2.7 million grandparents nationwide raising their grandchildren. The situation brings a mixed bag of struggles for many of those grandparents. The News Hour stated that, “Child welfare agencies are reporting an increase in the number of children, especially infants, taken from parents battling drug addictions and mental health issues. After years of declines, children in foster care rose … [with] more than 415,000” in the system.
This case was similar, but so very different. Destiny came through her grandparents’ door, from foster care, with the fight of her life on her little back. Weighing far less than most 5.5 year old’s, her body was beaten and tired by a foe named “cystic fibrosis.” Her diagnosis was unlike others – having the most extreme form of the disease expressed times two (with both parents having the exact same genetic mutation). Most would have allowed medical foster care to keep the child, but grandma Sheila – a former ICU nurse – took it all on. Giving love, affection, care, discipline, hope and a boatload of make-a-wishes. My friend Sheila believed she could make a difference, so she did it, anyway.
Breathing treatments with airway clearing techniques included wearing a vibrating vest to help loosen the ever-flow of thick, sticky mucus; followed by forceful coughing that left Destiny with belly aches and sore throats. She was a fighter. And, grandma was determined to use every ounce of her expertise to help the little warrior fight hard. When hope seemed lost with one infection after another, she brought hope through other sources, like holistic essential oils to ease pain and enhance comfort. They kept on going, anyway.
The grandparents acquired a travel trailer, sold their business, and hit the road to see all they possibly could. They home-schooled their teenage daughter and niece, who went along for every make-a-wish experience. Grandma mapped out the medical centers so interventions could happen, whenever needed. She equipped the family ahead of time to provide mobile medicine. Grandpa made sure every monumental sight on the U.S. map would be covered, including Grand Canyon, the elk migration of the pacific coast, the Redwood Forest, the last remaining glaciers in North America, and up into the Great Lakes to Niagara Falls and down into New York City for Ellis Island and 9/11 Memorial, and of course back to Florida for Disney World.
One particular story of their travels still resonates with me. While grandpa was driving and ascending a mountainous road, the truck suddenly developed a fluid leak. Rather miraculously, traffic went around them as he backed it down the mountain to a safe spot to make necessary repairs. That’s superpower of hope, right there. The same superpower that led grandma to strap 50-pound Destiny to her back at Mount Washington because there was a unicorn shaped rock formation that couldn’t be missed. They actually did several difficult treks like that, including Niagara Falls where the other kids and grandparents took turns carrying Destiny and oxygen tanks. Wherever Destiny was too weak to make the trek the family teamed-up to make it happen, anyway.
The story of Wonder Woman became an inspiration to Destiny as she turned 8 years old. “Diana” in the film excels as a trained warrior, harnessing her own superpower and use of the sword, lasso and armor. Destiny saw her own fight against cystic fibrosis (CF) as being similar to Diana’s. She too faced rage and grief in seeing (and experiencing) the suffering … she too looked for the good, anyway.
Her mission: kick CF’s butt !!
Her daily hope: More make-a-wishes … perhaps one more time to Disney !!
Her voice: speak up against darkness and suffering in the world !!
I wish I could say that all Destiny’s dreams came true. She kicked CF’s butt, repeatedly. She used her voice to help others understand the toll of CF and other kinds of suffering. She made known her desire to make things better in the world. She knew her time brief and she embraced it, incredibly, without fear. She let everyone know “heaven is waiting” and that she was okay with that. Her life has left an indelible mark in a time-frame most cannot begin to fathom.
I hope people will savor a glimpse, anyway, right here and right now. Life is but a glimmer in the grand scheme. Don’t shy away. Do it anyway, taking the good with the bad, harnessing your own “superpower” for heaven’s sake. Leave a legacy of AMAZING in your wake. See the mountains. See the forest through the trees. Smell the ocean air, feel the sand between your toes, bask in the glitter of life’s most precious moments. On the wings of Destiny’s wishes, a “beach wedding” is planned rather than a funeral service. We will be there, arm in arm, doing all we can to hug instead of cry (another wish of hers), loving others through it, and thanking God for all she did in her 8 years. Just like her grandma, Destiny did it anyway.
We got the news of her passing right in the middle of doing what Destiny was passionate about most … being a voice for those who struggle. I stepped out of a Neighborhood Memory Cafe gathering (for people with memory challenges) to listen, and cry, and reminisce with a friend relaying the time of Destiny’s last breath. The news also came in the middle of us preparing for an inter-generational Senior Prom event. Yet another way to connect with the elderly. Some may not think to honor senior citizens with such a top-notch sparkling celebration. Surely, Destiny would have loved the idea. Life is such a roller-coaster ride.
We had visited with her just a few days before, taking angel wings, a halo and Wonder Woman slippers for her impending journey. “I love them, and I love you!” she exclaimed. Destiny loved spending moments loving my mother through the battle with Alzheimer’s. She would do all her homework early just for the opportunity to go see “Miss Joan” and feed my mother, and take her out in the sunshine, pushing her around (on the days Destiny had extra wind in her own lungs). This child was “Jesus with skin on” to me and my mother, and so many others. No matter how she felt, she found a way to push through, like a little version of Wonder Woman.
If you would like to post a prayer or give a gift for Destiny’s celebration of life, please visit the dedicated website here. Her grandmother also has a goal of creating a means for Destiny’s surviving siblings to have a brighter future … that is yet another story.
Do It Anyway … thanks for the reminder Martina McBride.