Taking on the responsibility of going public with a newspaper reporter, (thank you Susan) and having both of our names published is a very scary undertaking, scarier than I thought.
But, big but….The situation is completely intolerable, and it is time to go ahead and lose the stigma.
Things this week alone have been just so crazed, and the stress on my body and heart is just so intense that the only feeling I can adhere to, other than guilt, is how does my son feel? What is it really like to live there everyday, without the proper treatment for his most personal actual condition? Brain Injury, Epilepsy, and the depressing hopelessness of knowing that now, after all of these years, there seems to be no hope. There is, of course, and I work on it everyday, but it’s taking so long. It’s hard not to let it take over body and spirit.
When he first started out he was in this small country hospital and then suddenly, and with very little warning, moved to this three story abysmally large structure. And now it is so overcrowded and the staff is leaving so rapidly, causing a shortage of real competent caregivers.
Every time I visit, there is a new rule, new people and new barriers to conducive family visits. One of my biggest hurdles is getting to go for a walk, when I see other patients on their own, walking around with headphones, carrying purses, the loneliness is palpable, and I pray for the day, when our family crisis is over and I can begin to advocate for others, in a kind of; “If I knew then what I know now”… vein…..O boy what I know now compared to my complete innocence and remarkable hope at the beginning.
Please New Jersey wake up, do the right thing, and let us rest.
momteacheradvocate 