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Friday, March 27, 2015

The Trouble With Handling Things Well

When Hillary was a baby I always asked the neurologist for a copy of the report he sent to the pediatrician.  In the report following the initial diagnosis of Aicardi Syndrome the neurologist told the pediatrician that my husband and I handled his remarks well.  I guess because we managed to maintain our composure and ask what must have been intelligent questions although I have no memory of that.  I do remember the drive home down Route 10, tears falling like rain as I stared out the window knowing that the life we had planned with our two little girls would be vastly different than we imagined.

         Now here we are over 22 years later and we’ve never lost the knack for appearing to be handling things well.  The trouble is that others are fooled into believing that we don’t need help. Partly because most of the time I wouldn’t know what kind of help to ask for.  How do you pick one thing out of the hundreds that you’d like help with, everything from basic house maintenance and cleaning to getting a break from the constant mental inventory of supplies and medications on hand?  Prioritizing is not my strong suit; unless I’m in a situation where things must be done in a very short time.  Somehow the stress of needing to get things done quickly causes me to focus and run on autopilot at the same time.  It’s an odd thing, and the best example I can give is when I go grocery shopping after work knowing that I have only a short time to get in, get out, and get home. And I do it one two three!  If I go on the weekend when I have no time constraints it takes much longer.  I lose my focus, I start thinking about how there are so many choices for even the most basic items. Then I might start making up little stories in my head about what other people are shopping for according to the items in their cart. Maybe I’ll see something that reminds me of my childhood and take a stroll down memory lane while walking through the aisles.  Focus for the task at hand vanishes when I have no reason to rush. There are many of us “special needs parents” in the world who just keep moving forward without much help.  I have found that when I ask for help from case managers for the state their first response is to tell me how they have other clients who have much worse situations and don’t get as much help as I do.  This makes me angry and feel like I don’t deserve help.  If we follow that train of thought, how bad do things have to be before we deserve any help? My daughter, because she does not have a trach nor require oxygen doesn’t qualify for nursing care, yet home health care workers cannot administer her medications as only nurses can do that. She cannot walk, talk, roll over unassisted, feed herself, use the toilet, bathe herself or communicate her needs.  She has daily seizures and is legally blind in one eye and visually impaired in the other.  Yet when I ask for any additional services I am told that there are people in worse situations who get fewer services.  Well that’s just sad!  So, I just keep moving through this life with as much grace and dignity as possible. 

Wednesday, March 4, 2015

Birthday Post, Late

         I was born in the hiccup of time between February and March in a year with an extra day.  It’s a day that many don’t understand, and leads to some confusion as to when to celebrate my birthday in the 3 years in between when there is no 29th of February.  I think the extra day occurs because the ancient folks who made the calendar we all go by couldn’t figure out another way to keep time and the seasons going along regularly.  I think it’s complicated and if I were more energetic I’d look it up and impart that wisdom to you but alas!  I am not going to do that.  Let’s just say they had a reason and leave it at that.  Getting back to when I celebrate, my mother always said that I was born the last day of February and I think that makes sense so I celebrate on whichever day is the last one of February.  Some people celebrate on March 1st reasoning that I wasn’t born on February 28th which I know but really it makes no sense to me to wait for the first day of March.  If, however, someone wants to wish me a happy day and give me cake or a gift on March 1st I will graciously accept!

         My brain works differently than many other people’s brain.  It’s nice to be unique, but it does lead to some frustrations in dealing with others on a daily basis.  For instance, if I am giving someone directions to a place I will always give landmarks for them to look for along the way because that is what I look for when going someplace either new or that I don’t go very often.  When I am on the receiving end of directions I frequently am frustrated because generally I get only a couple street names, some mileage, and second left, third right, or something like that with no landmarks.  It leads to confusion and frustration for both of us.  At work the different way I think tends to lead to my coworkers trying to help me but actually making things more difficult.  I know it looks like I need help but in my mind all is organized so that I can get through my tasks quickly.  It’s nice that they want to help me so I try not to let my frustration make me cranky. Oh the perils of thinking differently!

         I don’t know for certain that being a “leap baby” makes my brain work in a unique way, but I like to think it does.  Having an unusual day of birth makes for a good conversation starter, even if it does lend an air of confusion as to when to celebrate it!