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. 

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 29^th 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 1^st reasoning that I wasn’t born on February 28^th 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 1^st 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!

Sucked In

It was almost a year ago that at work we were uncertain as to our department’s future and unable to get a straight answer from anyone.  This created a “the sky is falling!” atmosphere which was stressful to say the least.  Although I was certain that my personal circumstances wouldn’t permit me to return after the summer break I went to “save our jobs” meetings.  I participated in a rather public way in trying to stop what was happening with a letter to the editor of several of our local papers. It was printed in our county paper and in the online version of a local free publication.  It was copied, printed, and posted around our work area by my coworkers.  It was an excellent letter, I was told by many.  That was quite gratifying for a writer such as me!  I went to meetings, I wrote a speech for a coworker.  I tried along with the rest of my department and some from other departments and the union to stop the inevitable. I was sucked into the panic and guess what?  The sky fell; well partially.  We all still had jobs with a new company if we chose to take them.  I took a job with them as they were willing to work with my personal situation and so far so good. 

In the past couple weeks I have been barraged with information about changes to the services my disabled daughter receives; and a call to arms.  “The sky is falling!” once again, this time at the state level.  I wasn’t going to join in, my plan was to stay informed; but guess what? I got sucked in and wrote a letter which I sent to the governor, our state’s department of health and human services, and posted on the Facebook page advocating against the proposal. ‘It’s a great letter!’  ‘Very clear and to the point!’  ‘Wonderful strong words!’  Those are some of the comments I received.  Once again gratifying for a writer; but very public and out of my comfort zone.  What’s worse for me personally though is that this letter made me confront the ways in which my child is lacking.  For over 22 years I’ve been by turns confronting and on some level ignoring those things while still dealing with them.  Yet here I am laying it out there for the entire world to see.  It’s heart wounding, it hurts, it stinks.  I prefer to focus on the positives about her; all the things that she is and not what she is not.  Will it do any good?  Will any of this stop the proposal as it is written from being adopted?  Let’s hope that there are a sufficient number of us willing to lay it all out there to make a difference and change the proposal so that it is fair to all.  If not, the sky may indeed fall; or at least part of it, and I’ll be picking up the pieces again.

February Thoughts

February is spelled weird.

Every four years there is an extra day (thank goodness because it’s my birthday!)

My very good friend also has a birthday this month, Happy Birthday!

Love is celebrated this month as well as Presidents Washington and Lincoln.

It’s women’s heart awareness month.

It’s black history month.

This year it’s a very cold and snowy month.

There are noticeably more hours of sunlight this month.

A rodent started us off; I think we need a different animal to do that, like maybe a cute puppy or something.

I eat too many sweets during this month between Valentine’s Day and my birthday—but I like it!

 

 

Three Friends

         Three friends went to dinner last evening after not seeing each other for a few months.  They fell easily into conversation, drove the waiter nuts (probably) because they were so caught up in discussion of their lives they forgot to look at the menu causing him to return several times to inquire if they were ready to order.  Even after their wine glasses and plates were emptied and cleared away they lingered over mugs of ice water until they were the only patrons left and the music was turned off; as is always the case when they meet.

         It’s been over 22 years since the three friends were brought together by their youngest children at early intervention therapies.  They have two children each, the first borns typical in development and the second borns with developmental challenges of varying degrees.  They have seen each other through the many emotions of parenting both special needs and typical children, sharing each one’s triumphs and setbacks.  When one of the children succumbed to her disorder at the tender age of 16 they walked hand in hand through the darkness of grief and keep the child’s memory alive still.  Although they come from three very different backgrounds, and would never have met if not for their children, they feel a kinship which supersedes dissimilarity.  Emotions can be a powerful bonding agent, and is a large part of what keeps these three together.

         When we feel an emotional connection with someone, it doesn’t matter what the details of their individual situations are.  The details give us something to discuss; differing viewpoints to consider as we all try to figure out this crazy life we are given. It’s all part of being human and if we find others who can be our companions on the road it’s beautiful.