Kohl and the Gang

2012 was a rough year for Team Chrestman.  It started out with Kohl’s turbulent beginning, which was simultaneously the best and worst experience of our lives to date.  It was truly a life-defining experience that will present us with both immense challenges and overwhelming joys for the rest of our lives.  Challenges with Kohl were punctuated with other family problems in the extended Chrestman clan from divorce to depression to breast cancer.

And the torturous football seasons the Saints and LSU had added insult to injury.  It may seem trite to mention something so ultimately unimportant as football with such serious issues, but we take our football seriously in these parts.  Pathetic though it may be, our emotional well being between the months of September and January depends largely on how the Saints and LSU are doing. Indeed, the emotional plight of Saints and LSU fans this year was not lost on Kohl.

“It’s Gameday, bitches”

“Wake me up next season.”

But it was not all bad.  There have been scores of happy memories, and our family, which was already a tight-knit bunch, has become even closer.  Many of those happy memories are memorialized on this blog.  More recently, Kohl celebrated his first Christmas in which he enjoyed meeting new friends, watching Pop open his personalized blanket and teaching his Dad that Christmas is different when you have kids by being constipated and forcing him to pull several turtleheads out of his butt.  ‘Twas a special Christmas indeed.

Kohl pictured with friends Maddox and Fleming.  The word “swagger” does not do them justice.

The Reuben blanket.  Providing warmth and entertainment since December 2012.

We divide our sorrows and multiply our joys with our family and friends.  For that, we are thankful.

We are also hoping and praying for a more uneventful 2013.  We are so confident that this year will be special that we have decided to  formally chronicle all of the cool shit that happens.  We will do this through the “Cool Shit Jar.”

Anytime something good happens, we write it down and place it in the “Cool Shit Jar.”  That way, by the time December 31, 2013 rolls around, we will have a veritable cornucopia of cool shit to read about and celebrate.  Cheesy you say?  If by “cheesy,” you mean glorious, then yes, I suppose this exercise is cheesy.  If anyone is still following this blog by December 31st, I promise to post all of the Chrestman’s cool shit.  I encourage you all to do the same.

Have a wonderful 2013, everyone!

HAVE A MERRY CHRISTMAS, PEOPLE

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.