One of the hard things about dealing with Acorn's medical issues is the lack of privacy. I've always been a very private person, but here I am, people tramping in and out of the house every day, every one of them needing to know his background - our background - his likes and dislikes, what pets we have, what hours we keep, and on and on and on.
We hired a housekeeper last year after Big Oak broke his leg. We were at the NICU every night, and barely keeping ourselves in clean underwear, much less cleaning up after ourselves. We kept her, because we need the help, because most of our non-work, non-sleep time is taken up with Acorn.
We have nurses - 3 on days right now (though there have been 4), and 3 others on nights (though we've been through about 6 total). Every one of them knows Acorn's medical history, knows when we get up in the morning and when we go to bed, and everyone on days has talked with his doctors, therapists, social workers, and teachers.
We have 4 therapists (well, 3 now because one of them quit, but still)....all of whom know everything the nurses know. We also have an Early Intervention teacher, and the speech therapist and social worker at school. We have a medicaid case manager too. And we've talked with the social worker at the hospital.
Plus, it's not uncommon for people who meet Acorn to ask, "What are the tubes for?" or even, "What's his problem?" and expect an answer. While I'm often giving a short answer like, "he was a preemie, and we're helping his lungs catch up," many people push for more details. (Of course, there's also the people who give us dirty looks, or who stare at us as they edge away, fearing that whatever Acorn has, they might get it).
Sometimes, I just wish we weren't needing to be so open to everyone about everything. But it is what it is right now, you know?