Pre-Crew
My name is Sarah Kalis and I am a wife, mom, and special education teacher. I have loved my work within the disability community, and I truly feel like it has always been my greatest passion. I have been a mom and teacher for a decade. Parenting a typical child while working with those with disabilities taught me early on to never take anything for granted. I thought I had always done an adequate job being an advocate for those with disabilities through my line of work. However, it took me to become a parent to truly understand the depth of the disability world. I am not going to lie, my deep dive into becoming a disability parent was not graceful, and it took place alone, on a NICU rocking chair, with MyChart in hand.
Diagnosing Crew
My son Crew was born at 31 weeks and 2 days. He weighed only 2 lbs 9 oz. After years of miscarriage and secondary infertility, I was in disbelief I would even have a second child. So, my pregnancy was instantly filled with anxiety. After a rather uneventful, yet nervous pregnancy, I found myself in slight discomfort one day and strapped to an OR table the next. I had developed severe and sudden onset preeclampsia. Crew was without amniotic fluid for an unknown amount of time and therefore was extremely growth-restricted. I was never prepared for a preemie in the slightest. When he was born, I spent the first few days under the false notion that he just needed to grow, and everything would be smooth sailing. Crew quickly blew us away. He needed very little oxygen support and was active, feisty, and beyond adorable. We were battling low platelets and trying to balance some chemistry from my toxemia, but other than that, everyone was truly looking at the glass half full. We had just celebrated Crew no longer needing oxygen, the isolate, and voyaging down to the less intensive floor of the NICU when a routine head ultrasound spotted a brain injury. I knew he was having a repeat head ultrasound that day, but no one seemed worried. When I opened the MyChart results, I was alone rocking my baby when I read the words “Periventricular Leukomalacia.” I scurried to Google. Cerebral Palsy. Google is scary, so I opted to read peer-reviewed journals instead. “Almost all babies with PVL go on to have some type of disability.” I sobbed. I signed up to be a special education teacher, not a special education parent. I instantly felt guilt for that thought. Here I’ve been, for 10 years of my career advocating for all kids CAN do versus can’t do. And I wasn’t even allowing my son the same opportunity to show us what he’s made of.
Crew's Crew
Crew was finally discharged from the NICU. We immediately enrolled him in Early Intervention and started in therapies. Crew had a slew of specialists, and we settled into our new normal. It took me a while to not look at the CDC milestone app daily. Occasionally I will practice checking off “not yet” for every skill listed to prepare my heart for doctor’s appointments. But Crew has softened so many hearts around him. He has taught us to laugh longer and to love harder. He has taught us the value of inchstones. He moves mountains versus milestones. His giggle is infectious. Knowing that Crew has a mom with a master’s in advocacy, a sister with a black belt in empathy, and a dad with an armory of hope, he will live a great life.
