Life With Jack: A Reminder

By Kara Downs

G-tube. Ventriculoperitoneal shunt with one revision. Sinu shunt.  Trileptal. Baclofen. Artane.Ligation of the hamstrings and adductors. Nissan fundoplication with three repairs. Insertion of two PIC lines to administer medication. Cerebral palsy. Hydrocephalus. Grade IV intraventricular hemorrhage with extensions. Developmentally delayed. Spasticity. PT. OT. SLT. Vision therapy. Wheelchair. Power chair. Stander. Wedge. Gait trainer. AFOs. Hand splints. Turtle shell. Bolster chair. NICU. PICU. Macomb reservoir. CT scans. X-rays. Swallow studies. Epilepsy. Ventilation. Resuscitation.

Credit: Kara Downs

THIS IS MY SON. BUT THIS IS NOT MY SON.

THIS IS MY SON, BUT THIS IS NOT MY SON.

THIS IS MY SON, BUT THIS IS NOT MY SON.

Rachel Ray. Smiles. Squeals of delight. Grunts of disgust. “Ay” for yes. “Addy” for daddy. Caillou. Bob the Builder. Mrs. Windom. Mrs. Jackson. Road trips all over the country. “It doesn’t look like there’s anything wrong with him!” from my students.  Grabbing my skirt as he’s laying on the floor. Somehow managing to untie Daddy’s shoe. Grandma Babs burning the chicken as we watch him smile for the first time. Susan the PT. Walid, the angel from Panera. Surviving against all odds. Ride for a Reason (Jack’s first  motorcycle rally!). Backyard in the wading pool. At the Y in the big-boy pool. Laughing at his little brother. “Soaking his bones” in the bathtub. That first tentative smile as he comes out of anesthesia and sees me sitting by the bed. Crying to the Happy Birthday song. Laughing when Grandma Jen shakes her booty. The Barefoot Contessa. The first time he drove his power chair and was able to move independently. Waking up laughing in the middle of the night. The big boy bus.

THIS is my son.

Kara Downs is an English teacher at Centennial High School. She lives in Champaign with her husband, Mike, an artist and writer, and her two sons. Jack, was born three months early. His prematurity caused bleeding in his brain, leading to cerebral palsy and hydrocephalus. Jack is a bilateral quadriplegic, unable to sit or stand unassisted. He is also nonverbal. Jack had a twin sister, Bridget, who survived for 18 days. He also has a 3-year-old brother, Charlie.