Five years ago, my daughter was born with a rare condition called arthrogryposis as well as additional cognitive delays. My wife quickly gravitated towards the internet support community to learn as much as she could, while I was feeling stuck, asking myself the larger questions about my daughter’s path in life. Right after her first birthday, we found ourselves attending a National Support Conference for Arthrogryposis. It was there I met “Scarman.”
Ward “Scarman” Foley was born with arthrogryposis and has spent the last 30 years giving speeches across the nation and abroad. He is also a published author and hospice volunteer. He spoke at that conference and engaged new parents, old parents, teens and adults who had never met another person with the same condition. These were his words:
The Mighty - An Open Letter to Tim Cook, Apple's CEO, From a Parent of a Child With a Disability →
My name is Robert James Ashe. We’ve never had the pleasure of meeting but I’ve been a huge admirer of both, you and Apple, for a very long time. I’ve worked in film and television for the past 20 years using Mac products to plan, design, edit and create works to entertain the viewing public. In my household, you will find Macbook Pros, iPads, iPad Pros, iPhones and a really old mac pro used by myself and my wife. My oldest daughter uses her iPad as her voice. One of the biggest things I’ve always admired about Apple was their commitment to giving people with disabilities access to your equipment. It is because of this fact that I am writing you today to make one small humble request. I am requesting that you add medical terms to the Mac’s spelling dictionary. The word I personally am after is “arthrogryposis.”
The Mighty - Along the Way →
My first daughter was born with the amyoplasia form of arthrogryposis multiplex congenita. She has extremely low muscle tone on all four of her limbs, no bicep movement in her arms, her elbows don’t bend all the way and her knees don’t straighten. She is also nonverbal and currently participates in ABA therapythroughout the week.
My youngest daughter was born with amniotic banding syndrome, for her, it means she only has a few fully developed fingers and she had to have her leg amputated. She’s addressed her physical challenges through surgery and has lots of fun sprinting around with her “robot leg,” which is what we call her prosthesis.
I take my job as a father of a child with disabilities very seriously, but it is also important to note that I am happy. I have two beautiful daughters and an amazing wife.
Here are some things I have learned along the way that I think can help anyone who knows a family like mine:
The Mighty - The 10 Magical Moments in an Otherwise Tough Disneyland Trip →
We were tired. It was a long day.
We had decided to take our daughters for a surprise afternoon trip down to Disneyland. They love that place more than anything any of us has ever loved in our lives. Our visits to Disneyland are usually magical. We vowed to never take preschoolers, yet somehow we’ve been there four times in the last year.
This trip was different. The drive was an unusually brutal two-hour journey that got us there in the late afternoon. It was also our first trip to Disneyland with our oldest daughter in a wheelchair. She was born with a condition called arthrogryposis, and she has to wear braces in order to walk. She enjoys walking, but she’s been recovering from a major surgery and hasn’t been allowed to walk much over the last three months.
This was also our first trip to Disneyland for our youngest daughter’s prosthetic leg. She was born with a condition called amniotic banding syndrome which has left her without a usable right foot. Thanks to surgery in December, she’s now running around with her new “robot leg,” as it’s called in our household.
The Mighty - I Used to Hate the Beach. Then, My Daughter Came Along and Changed Everything. →
I used to hate the beach. I loathed the bright, hot sun that makes my eyes malfunction and my pale skin burn brighter than the reddest lobster after three minutes of exposure. I couldn’t stand the smell of the sea, a smell that can only be described as ten-day-old seaweed covered in iodine and set on fire in my nostrils. I was never comfortable with the fact that no matter how careful I was, I was always a magnet for small packets of sand that found their way into my car and laundry for days to come.
Then, I became my daughter’s father.