Time Turner wanted

So another parent of a feisty kid and I were talking today.   She mentioned yet another set of parents who were having problems getting some funding due to not being fast enough with paperwork to suit the funding source.   A common problem. Sigh.  By the way, this is not unusual to talk about these things. Parents of disabled kids run into each other  ALL the time.  Doctor's offices, therapy appointments,  grocery stores, endless school meetings of one sort or another.  It's a small world even in the biggest of cities. After Feisty Pants was once helicoptered down to Children's Hospital of Philadelphia, I rode up in the elevator to the PICU with the mother of a kid from Binghamton who had been in the room next to ours in the ER.  Her kid had been helicoptered three hours before mine.  And so, we talk. A lot.  It's like being a war zone. You are instant allies in the fight to get our kids what they need.  We discuss bureaucrats, social workers, doctors, therapists and modalities, equipment  and vendors, funding streams and insurance companies, and tips and tricks.  And I doubt any of us would win prizes for political correctness or ever be unwilling to dish about what we love or who we hate. (Take note, people who deal with us on a professional level, we are taking about you a LOT.)

            So, people who deal with families like mine, here is something I'd like to tell you. We are frigging BUSY.  Seriously.  Most parents are. But,  much like how no one who isn't poor ever gets how expensive it is to be poor, people do not seem to understand what it's like to be constantly pressed for time.   FP needs someone to be awake and alert all the time.  My husband and I sleep in shifts.  We routinely work 16-18 hour days.  24 hour stretches are not unheard of.   And we are lucky. We have each other.  Divorce rates are higher for the parents of disabled children. FP gets physical therapy, occupational therapy, speech therapy, aquatherapy, visual therapy, massage therapy.   Multiple times every week.  Not all of it in school either. And she only gets those because we have not figured out yet how to work in hippotherapy and a chiropractor. Add doctor appointments, sick visits, hospital stays.  Drug stores.  Deliveries from medical supply vendors.  And I am constantly juggling all these appointments with all of the providers shifting schedules.  And usually fighting with somebody over getting something arranged promptly or getting it paid for.  And that's just one kid.  I also have a house to run and pesky people who think they need attention too just because they're family. And paperwork. You NEVER run out of paperwork when dealing with a disability.  And I see LOTS of families where more than one kid is disabled.  So the workload is doubled or tripled.

              So, please understand.  We do seem overwhelmed and disorganized.  We are. But almost never because we don't care. Almost never because we cannot be bothered. Try to imagine your craziest busiest day. The one where the kids are sick and whined all the way through the doctor's appointment.  And the dog ate something it shouldn't have and left you the residue.  And everyone whined about dinner.  And the phone would not stop ringing. ("oh good, you're home. I'm glad you're not busy.") And at the last second, you found six pages of forms that needed to be mailed out that day. The one where all you wanted to do was find five minutes to wash some biological substance (from some other human being. ewwww.)out of your hair and find your bed under all the laundry you haven't folded yet and let sweet oblivion overtake you.  That's our normal day.  Please, cut us some slack.