I’m a terrible parent.   I don’t beat my kids and never shook them when they were babies, but I really had no right choosing to have children.  Becoming a parent is a selfish decision that requires you to be completely selfless… and it’s a life sentence.  I definitely underestimated the commitment and was quickly outmatched.  I was overwhelmed, times ten, and it took me until our eldest was in Kindergarten to even begin to get my arms around it.

 

When that same child began to lose feeling in her fingers and toes in 6th grade, it didn’t occur to me, “Oh, a rare disease must be overtaking her body.”  Doctors weren’t recognizing it immediately, so we just slowly watched her deteriorate for 9 months until she was paralyzed from the shoulders down.

 

Nothing will challenge a person, marriage, or family as much as managing a disease like CIDP.  With monthly treatment costs in the $40,000 range, and paralysis as the prevailing symptom, it is your worst nightmare on steroids.  The general odds and  statistics all the way around this disease are some seriously bleak shit that many of us will live our entire life without ever experiencing.  They are the lucky ones, for sure.

 

As already inept parents of healthy children, managing this disease, the treatment, insurance battles and all of the financial uncertainty was something I knew we would struggle to  pull off.  I worried about the ability of our marriage to withstand the endless beating of surprise bills in the 4 figure range, while needing one parent to focus solely on patient care.

 

No manual was provided when we were handed  this rare, incurable diagnosis.  We literally  didn’t even get a pamphlet explaining it!  There are no recommended reading lists at your library.  There are very few support groups and you don’t just meet people on the street with the disease.  Everything we learned was done real-time. 

 

I wrote this book to provide practical survival tips for people in similar situations. All of which helped us maintain our daughter’s health, our entire family’s personal sanity, and our financial solvency.  Also, to raise awareness about Guillain-Barre Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy.  To share how we have survived a life of unending uncertainty and even learned to laugh along the way.