Once again we face a long, three day holiday weekend. While others are celebrating, we are frustrating. Short staffed, irritable staff, workers who take off an extra day on this three day weekend…. extra day before and/or after (or both) that celebratory American holiday. Leaving the patients lost in their own selves, whatever the treatment team wants the treatment team gets.

And kudos to those staff members who do double and triple shifts, because they care!

These are the long, most difficult days, without activities and without treatment.

In a Neuro Rehab, where most TBI patients reside, they have access to Skype, email, and other forms of communication, not to mention activities that are planned and implemented on these difficult days. We look forward to the day when New Jersey relents, and admits, we must go out of state.
In the meantime, a perfectly lovely young man copes, most admirably with his condition, his situation, and his ability to communicate with his family. He is doing okay, you guys, and he needs letters, phone calls, and letters. I talk to him multiple times a day. He is coping.
Having spent four days at the Brain Injury Alliance of Pennsylvania’s annual conference in late June, he copes admirably. I talked to so many people who said my son may just be remarkable, in the way he is handling this situation.

Right now I feel like I am in my own Civil War as I negotiate the laws of different states, as I am sure we are eventually going: out of state for real treatment, for a few years there was a thing called “Return to New Jersey” a document that forced even people who had been successfully treated out of state for 30 years or more, to return to the state, this thankfully was rescinded. Phew…

I want to be sure that whatever we in my family are going through, there are many families going through far worse.  No one knows this better than me.

Happy Labor Day to all of us and much hope and prayers that this is the last three day holiday weekend my son spends in the wrong institution.