Having a child with global brain damage involves a number of potential problems that are themselves global in scope. Cerebral palsy, mental retardation, epilepsy. These are only some of the many realistic possibilities. Keeping in mind the overarching goal of maximizing Kohl’s development, we use a medley of therapists and doctors.
He sees physical therapists to improve his gross motor skills like sitting up and rolling over. He sees occupational therapists to improve his fine motor skills, like holding toys, grabbing his dad’s lower lip or his mom’s hair. The vision therapist helps him track objects and focus. The feeding specialist tries to improve his sucking reflex and speech. The music therapist stimulates him in a different way and helps tie everything together.
Kohl also makes his rounds through just about all of the pediatric specialties – neurology, gastroenterology, optometry, opthalmology. Every day, he takes two different medicines for his seizures, one medicine for his acid reflux and four different vitamin supplements. He also has several other medications on standby to be taken as needed when problems arise.
Kohl’s team of health care providers is wonderful, and we are lucky to have them. But to say we are not completely burned out with doctor visits and therapy sessions would be a lie. That overly-sanitized smell. The wait times. Worrying about insurance coverage. The overwhelming amount of information, much of it negative. The constant reminders that your son is at the very bottom of any number of bell curves. It really wears on you.
In addition to the obvious concerns we have about Kohl’s long-term prospects, we experience an almost constant anxiety about whether we are doing enough for him on a day-to-day basis. Did we do enough stretching exercises today? Did he take all of his medicine? Did he wear his hand braces for long enough? Did we read him at least one book? Did we work on visual tracking?
Kohl’s parents, being the Type-A personalities that they are, recently sought help from one of Kohl’s doctors in consolidating the absurd amount of information being thrown at them. “What are the most important things we should be doing with Kohl every day?” We asked that question expecting to get a detailed, prioritized list. But the answer was much simpler.
“Just love him.”
It is easy to lose sight of the big picture when you are preoccupied with therapy sessions, doctor’s appointments and the concerns of the day. But those three words were a relief to us.
No matter what happens from here on out, our list of things to do with Kohl consists of just one task – just love him.