In blogging for the last 4 years, I’ve written about many different topics, but one theme that has remained constant has been my focus of sharing about how our family is discovering the beauty in difference and choosing to celebrate the incredible beauty all around us, and how we want to encourage others to do the same. After connecting with and reading about so many amazing people and families doing so many amazing things, I started a guest blog series called Celebrating Beautiful, as it relates to beauty however it can be interpreted: motherhood, faith, your kids, an experience, home, and so much more.
I first connected with Sarah Evans last summer, as she was starting up a new podcast sharing the incredible stories of families raising children with disabilities and illnesses, and I was honored to be one of her first podcast guests. Since then, we have emailed and connected on social media often, and I would absolutely love to meet her in person one day. Sarah lives with purpose, love and devotion to her family – and her guest post brought tears to me.
Here is Sarah Evans on Celebrating Beautiful…
Just over two years ago I was sitting in church, listening to a story that felt like it was being shared just for me. It was the story of a woman named Mary Bartels who kept an inn across from a hospital where she rented rooms to outpatients at the clinic. One night she housed a little old disfigured man whom others had turned away. He returned frequently for treatments over several years, staying with Mary each time. She got to know him and his big, gentle heart quite well over the years.
After he had passed away, Mary was visiting with a friend who had a greenhouse. As she looked at her friend’s flowers, she noticed a beautiful golden chrysanthemum but was puzzled that it was growing in a dented, old, rusty bucket. Her friend explained, “I ran short of pots, and knowing how beautiful this one would be, I thought it wouldn’t mind starting in this old pail. It’s just for a little while, until I can put it out in the garden.”
Mary smiled as she imagined just such a scene in heaven. “Here’s an especially beautiful one,” God might have said when He came to the soul of the little old man. “He won’t mind starting in this small, misshapen body.” But that was long ago, and in God’s garden how tall this lovely soul must stand!
I remember the day I heard that story so vividly because it came just days after my daughter Betty had been diagnosed with a rare genetic disorder called Potocki-Shaffer Syndrome. As I listened tears streamed down my cheeks and my heart leapt, knowing that with this sweet addition to our family, we had been given a gift beyond compare.
There are fewer than one hundred people diagnosed with Potocki-Shaffer Syndrome. Because Betty is only three and because there is a scarcity of information about the condition, we don’t know a lot about how her future will look. But we do expect that pretty much every area of her development will remain delayed and impacted on the moderate-to-severe end of the spectrum – motor skills, language, cognitive and social skills, etc. The syndrome is also associated with hearing loss, visual impairments, low muscle tone, autistic behavioral traits, and multiple bone growths called exostoses.
There are certainly challenges inherent in parenting a child with special needs, differences or disabilities. But having Betty in our family has blessed, polished and enhanced our lives in innumerable ways.
Not only has parenting Betty brought increased compassion, patience and gratitude, it has also opened my eyes to many special experiences that remind me regularly that God is mindful of my little family:
Like the fact that before we even had our first child we bought a home merely miles from the special needs school that Betty would one day attend. Or the day we went in to get her fitted for an adaptive stroller and ran into another parent and child with the same rare diagnosis as Betty – one of only three other families in the entire western United States. But miracles and “coincidences” of divine design aside, there is a persistent stillness and certainty in my heart that this is exactly the life and family that I need.
This probably isn’t a life I would have chosen for myself. There are challenging behaviors and specialists and therapies and delays and diapers that seem like they may be a part of our lives forever. But despite the challenges and very real difficulties that come with this journey, I am afforded tiny glimpses of the bigger picture and feel so grateful to mother this daughter of mine. After all, she is an especially beautiful one.
Sarah Evans is the mother of two spirited daughters ages five and three. She and her husband live and play in Salt Lake City, UT. Sarah uses narrative storytelling to share parents’ stories of life in the trenches on her podcast Bringing Up Betty: True Tales of Special Needs Parenting. You can listen on her website or iTunes and follow her on Facebook.
The post {Celebrating Beautiful} An Especially Beautiful One: guest post by Sarah Evans appeared first on Courtney Westlake.