What not to expect when you are a parent

Everyone read the series of books about, "What to Expect When You are Expecting" before having our children didn't we?  For me, they were second only to the Bible on my reading list when I was pregnant.  I felt really prepared to be a parent and most of the advice and information in the books proved to be useful and true.  I believe that my first three children were ahead of the game due to the knowledge I gained from my reading.  I love those books.

Nobody prepared me for this.  These children who grew in my heart do not follow any of the timelines in those books.  For example, it did not tell me to expect the sleepless nights to last until my child was 11, and probably longer.  They did not prepare me for having more professionals involved in my life than I have relatives.  Or, for conversations including the term "DNR" or "heroic measures".  I was not prepared for the embarrassment and even humiliation at times that my children's behavior would inflict on me.  Nothing can prepare a person to place their child out of the home for a time to keep the family, and the child, safe.  Nothing.  What book would have told me that you would lay beside your child in the hospital for almost a month without knowing if you would take them home again?  Or that you would spend hours at a time researching remedies for seizures, aggressive behavior, sleeplessness, speech delays, and such?  That the solutions would elude you time after time despite your best efforts?

I love books. I have been a reader since I was a child, teaching myself to read at the age of 4.  If only a book could tell me how to take away my children's pain from living in a world that does not understand or recognize the enormity of their struggles.  I want to write such a book but I am too tired.  Can you help me? Can you tell the world how hard it is for these kids?  Can you stand up for them when they are mistaken for "naughty kids" when they are really doing the best they can to overcome the daily onslaught of Hard?

My family is fortunate to live in Clatskanie, a community that comes together to comfort and protect one another.  To bring relief in times of need.  But the global picture remains the same.  No book could have prepared me for this war and I need all the help I can get.