We are in the final stages of a real chance for recovery as we await the last vestiges of discharge from the nightmare we are living and moving my son to a specialized Neuro-rehabilitation facility which will finally treat the real problem, Acquired Brain Injury.

It has been a long seven years.  I have done much reading and much research, and one of the heartbreaking pieces of all of this has been learning how many people are wishing for a bed, (a BED!), in a psychiatric facility who truly need it. It’s hard to imagine suffering people, who really need to be in hospital, but can’t get the help they need, and I have a son who can’t get out.

Because so many states have followed what was supposed to be the best chance for recovery, community based facilities, many people can’t get treatment since so many psychiatric facilities have been closed, but not enough ‘community based’ homes, refuges, group homes,  have been opened. I have learned that many people are instead institutionalized in prisons, instead of hospitals.

At first when I started to read Pete Earley and found out about his son’s hardships I couldn’t relate.  Then I thought long and hard about what we have been through, and I found that, although our story is different, it is our story, and it is imperative that I share.

It was supposed to be a good thing, to deinstitutionalize people and send them into the community, but first you have to put in place those significant homes, group homes and other facilities before you go and close down facilities that are working.

All of us of a certain age have one single reference point to psychiatric institutions and that is the film, the book, and the play: One Flew Over the Cuckoo’s Nest, the 1962 novel written by Ken Kesey.  And oh boy, that Nurse Ratched, tortures, in so many ways that no one really knows how accurate her portrait is. But, she tortures, in that she ratchets up situations that are not in her realm.

In future, I will talk of real staff members who are ‘Nurse Racheds’ real people from 2011 to 2017 who still exist.  Frequently, they are not nurses at all, but staff that use their existing power to try to control, scare and in-dignify their patients, their parents, and their advocates.  Yes, it happens, and I have seen it.  In our case they are never the nurses.

So, at this point we await transport, and complete discharge.  And it must be by Air Ambulance, because you can’t just take a person, with severe Epilepsy, an Acquired Brain Injury, who has been institutionalized for no reason other than that no other facility, acceptable for the specialized treatment he really needs, has accepted him. Although we tried, but we were ignored, dismissed, or rescinded at the last minute, for seven years. You can’t take that person 1,200 miles away, to a specialized facility on a commercial airline, with a layover and a change of airplanes.

My anxiety is at a premium right now.  I traveled only once in a small plane, for a short trip, with friends one summer evening, and I was nervous then!  All of 23, expecting my first child, and after I was up there and saw the full moon, it actually was lovely.

How is my anxiety to compare with my son’s anxiety?  He doesn’t believe the transfer will ever happen. He thinks it’s just a dream.  How will I find the strength to keep my frustration, anger, and ultimate fear from percolating onto his fragile psyche?

I don’t know right now, but I only know it’s almost over.  And my son deserves to be treated by specialists who do not work for the state, who know what they are doing and who want to care for him.

My son is a person. And his life is important. His future should be intact, and I need to believe in him, his bravery, his brothers’ constant perseverance and hope for him, and most recently, the friends and  family who have come forward to fight for him.

I will get on that plane with my son, his brother, and the medical staff who are dedicated to this task, and we will bring him to this facility all the way to Oklahoma.

Maybe during the flight we will take turns reading one of his favorite books, The Outsiders, S.E. Hinton, and set in Oklahoma.  Maybe we will find hope in knowing, what I have always taught my boys, literature is important, but if he asks to just listen to some John Lennon or some Bruce, that’s okay too.