<FROM KARI’S PERSPECTIVE> In April of 2019, our rare queen Sloanie Lou was born. Everything changed at our 20-week ultrasound when we received unexpected news about Sloan’s life. As we started to process this news, we were ready for additional diagnoses as Sloan grew and we were thrown into a world of weekly in-depth ultrasounds, endless monitoring, and appointments we never planned to attend.
But you can’t plan for everything from an ultrasound. And many of Sloan’s diagnoses never came until after Sloan’s birth.
Sloan truly hit the world like a meteorite: quickly and with major impact. Per Sloan’s vibe so far – she came flying into our world like one hell of a badass in tiny human form. Once born, Sloan was immediately intubated and life-flighted to our state’s level four NICU. She spent two (long, life-altering) months in the NICU and eventually came home on May 31st. Just bringing her home required several care conferences with Sloan’s full medical team, an extubation, trach surgery, gtube surgery, training on all of her medical care, and preparation for 24/7 at-home sat monitoring in those early medically-fragile-Sloan days.
Today, Sloan has defied the odds. She eats totally by mouth (still has a gtube for meds), can sign when she’s hungry, and continues to communicate and grow in big ways.
We currently have OT, PT, ST, and the Utah School for the Deaf and Blind coming in to our home regularly to help us help Sloan. Primary Children’s has become our second home, and we have Sloan’s pediatrician and specialists on speed dial. We currently average 18.5 appointments a month between therapies, specialists, and hospital visits.
Sloan has become a legend for her determination, grit, badassery, and intellect. She’s sharp, brilliant, funny, and wild. She doesn’t put up with any shit, and makes that absolutely clear the moment you meet her. She took after her family in countless ways, but she’s an exact replica of her dad in both looks and intelligence, with grandma’s wild personality and tenacity.
Sloan is disabled. It is part of her identity. We use the word disabled and disability around here: consciously avoiding words like special, special needs, differently-abled, and other words that many disabled adults and the disability community have deemed as condescending and demeaning.
As Sloan’s mom: I’m on my own journey of learning and growth. I started out advocating and speaking up: sharing many details about Sloan that I now regret. And while that truly was with love and the best mom-spirit and intention, I know I have made mistakes along the way. I still advocate and speak up as Sloan’s parent, but I also find myself actively practicing listening and learning from disabled leaders and voices so I can raise Sloan in the most empowering, supportive way.
As you look through the photos shared below, you’ll see why Sloan has truly become our queen in CHARGE.
