Medically Complex and the Stories of Our Lives

In a recent trip to the ER for what I KNEW was an unusual infection I experienced--yet again--SOP. Standard Operating Procedure.  I don't make ER runs for nothing.  After four years I know when Rhyse is experiencing symptoms beyond typical .  I recognize the changes in his behavior, skin color, urine output, formula tolerance, energy level, breathing pattern and oddly enough the smell of his vomit.  There's "just a virus" and then there is "an infection has taken over and he needs medical help now!" After check in and vitals we were escorted to a room at the end of the hallway, in fact the room at the furthest end of the ward.  The isolation room. Upon discharge from the NICU four years earlier, as a matter of procedure, Rhyse's arm was swabbed for MRSA.  To no surprise he tested positive. No wounds. Just a smattering of MRSA inconsequential to his health at that time, or any time really.  But the rule books say, "once diagnosed always diagnos...

"13) Don’t lose yourself.   Don’t let being the  parent of a special needs child  create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity. But it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself." I have yet to figure out what the true definition of a "special needs" child is, exactly.  But in lieu of a well-fitted definition I think number 13 from 20 Things every Parent with Special Needs Kids Needs to Know may be the closest!   I know that in the first two years of my son's life my identity was lost--totally.  And after four years i'm only recently in the process of re-finding and re-defining my identity.  It's not easy. It is more of an uphill battle than I wou...

As I sat in a chair watching Rhyse play in the Family Library at Children's DeVos Hospital I couldn't help but stare at the mayhem the Thomas the Train track set had become since our last visit a few days prior.  It is our custom to arrive at the hospital a half hour early to make a mad dash to the Meheny Terrace Bistro for a cup of decaf coffee with vanilla syrup and cream, and then to the Family Library for play time. At our last visit, only a few days earlier, the table was all set up and a boy the same age as Rhyse was already racing Percy around the tracks.  As the two boys jockeyed for position around the various structures they quickly figured out a sharing system that allowed them both to play with the same train. Of course most of the trains had long since disappeared, leaving only Mr. Percy. So on this day, with a scattered, broken up mess, Rhyse had no idea what to do with it. He walked around and around the table eagerly trying to find two connected pieces to p...