Wednesday, September 19, 2012

Everything I know about reality....

Everything I know about reality was taught to me by a schizophrenic. Seriously.  The details are a story for another time. Suffice it to say that my early experiences prepared me to see certain things in a different light.  Lots of people think "reality" means the same thing as "fact" or "truth".  I am of a different opinion.  Truth doesn't change and isn't altered by opinion. Facts are also not altered by opinion, though they can change with the discovery of new truth. Reality on the other hand is ENTIRELY based on opinion, is subjective and is, in fact, being written with every word we say and every thought we think.

Reality is simply what two or more people agree to and believe in regards to what they see, hear, feel, taste, touch etc. 

Example: If a schizophrenic hears a voice that no one else can; it is by definition, not real... as nobody else lives in that reality with him. I.E. nobody else agrees they heard an invisible albino anaconda whisper poetry from atop the television set.

As we go through our daily lives sometimes we live in a reality nobody else does and we don't even know it.  In other words, we can experience un-reality without ever experiencing a psychotic break.  Example:  In a class I am teaching, I can give a set of instructions for an assignment. 29 kids are paying attention, listen and respond to what I say. 1 kid is distracted when I am speaking. He hears me say something the others do not.  When the 30 children turn in the assignment at the end of the period, it is obvious the 1 student experienced a different reality.  His assignment is TOTALLY off the mark. If you ask him, he did as instructed.  He just happened to be the only one who heard that particular instruction.

So, you see "reality" is so subjective. It has nothing to do with what actually IS.  It has everything to do with what we perceive (correctly or not) and how that perception then influences our actions, words, conversations, social interactions etc.

I freely admit to establishing my own reality lots of times.  Especially wen it comes to my daughter.  And why shouldn't I?  Everybody else has their own version of her reality.  One PT believes she will not walk without HKFOs.  (Braces that go up to her hips).  Another PT thinks she may only need little braces that slip into her shoes in order to walk. One doctor believes she is "slow to respond" cognitively. Another thinks she's a bright girl.  If I listened to every reality out there about her, my head would be spinning constantly.  A long time ago, I realized that I would need to develop my own reality- based on facts I experience, and also on opinions I have formed.  That reality is that my little girl is capable.  That she is going to surpass expectations. That she is brilliant.  These things for me are real and are unlikely to change just because of some random individual whose reality is a little more full of grey clouds than my own. I KNOW who and what my daughter is and she is magnificent, thank you very much.

I want to say a big old sloppy thank you to all the friends and family who choose to actively participate in that reality with me. Its nice to have you here.  Please feel free to pet the unicorns and if you borrow the magic carpet, leave a note.  I love you all.  To everybody else, you are missing out.  Plus its gonna suck to be wrong when she walks down to receive that Nobel prize.  You might want to consider switching realities now in order to be mentioned in her acceptance speech. 

Monday, September 10, 2012

A comment on crystal balls

"I gave up on crystal balls."  is what Evangeline's doctor told me today during our appointment. He said it with a southern accent and a smile.  I smiled back, genuinely, because I expected that answer. In fact, its the same answer I would have given myself if we were sitting in different chairs....and really.... I knew my question was stupid.  OK, so as an educator, I can never really call a question "stupid", lets just call mine "ill advised".

So, what could I have been asking about to prompt my physician to explain his philosophy of fortune telling? The future, of course!  I wanted to know what sorts of options we might be looking at in a year in regards to Evangeline's potty training.  I KNOW that nobody can predict that right now, but sometimes it is of little consequence what you know.  Sometimes you are just going to blurt things out anyway.

By the time I asked my question, we had been at the clinic for over four hours and without realizing it, all the muscles in my body seemed to tense up with the passing minutes, wound up (as my Nana would say) tighter than Dick's hat band.  I never knew who Dick was, or why he wore his hats too tight, but surely that expression fit my mood today.  Having missed all her recent appointments, I forgot how the tension can weigh on your very bones.  How, the longer you sit there, the more anxiety you feel...with images of your future doing stealth ninja attacks, intruding on your present until the three-month-stale waiting room magazine in your hand phases into a kind of kaleidoscope with images of other, future, waiting rooms all chopped up and pieced together in a random, unbroken string. 

No, I'm not on acid.  I'm just explaining how to those of us with "special needs" children doctor's offices seem like places where time...linear pointless.  We have been there before, are there now, and will be there again.  Its no wonder that things get muddy in regards to asking about the future.  We go there for answers only to be reminded that we are indeed bound by time and doomed like the mere mortals we are to wait for the knowledge we seek.

All humans crave knowledge.  We mistakenly believe that "knowledge is power". Those three words are the single greatest lie to ever be perpetrated on humanity.  Knowledge of the future rarely empowers anybody to do anything....except dread or dream or hope or despair. Just ask ol' Oedipus Rex.  He'll tell you the dangers inherent in seeking out an oracle. The true magic of human existence always happens right where you are.  In the present.  So, I'll just appease myself with waiting, knowing that a magic moment for my daughter will show up exactly when it is needed the most.  We will know what to do only when the time is right. 

For now, we do not need to introduce any catheterizing into her daily routine.  There is no reflux into her kidneys and her filling pressure is normal. On the down side, she is not voiding even half the contents of her bladder basically making a recipe for a petri dish of bacteria, but she has had no serious infections so we are holding steady.  It looks as though her bladder sphincter isn't too strong but it does function to some degree. My concern was and is for the future.  If we will need to cath her to help her with social continence before she starts school at 3, then perhaps we should start now so she will be used to it.  But the doctor is not certain yet what she will or won't need and so he has counseled us to stay the course.  It ain't broke, so let it be.

I tell you, just as I embrace the hippie thought process of living in the moment and taking things as they come, I let a moment of uncertainty or of waiting wind me up and I have to remember the truth all over again.  Crystal Balls and life simply don't mix.  Happy people know that "knowledge" about the future is just a Jedi mind screw. A trick to tempt us into chasing our tails to make the outcome into what we desire. The best knowledge and only truely useful knowledge is the knowledge of the moment. And right now, we know Evangeline is doing just fine.  And that's what matters.

Friday, September 7, 2012

My First week as a full time mom!

My first week home has been eventful and busy.  I attended my first PT session in months and learned how to support her body to help her learn to crawl.  So far its been frustrating for me and her (for me to see her try so hard) and for her…well to have to try so hard! lol  But I can see progress. 


We have begun the new “big girl” diet we got from the nutritionist. This is our first week on it; it has less bottles and no more processed baby food. Now she gets egg or yogurt or meat for protein and pretty much all the fruits and veg as she can chomp! We are watching her carbs to make sure they are healthy/whole grain to keep her from gaining any more chub.  At this point we want her to grow into her weight and so far so good.  She hasn’t really gained anything in the last 6 weeks or so but has grown another inch.  So, hurray baby girl and hurray us.  Keeping that weight down will help her in her efforts to crawl. 


She got a little case of thrush this week and we had to see the pedi to get some medicine to rub in her mouth.  And, of course, with the addition of more solid foods, we are having to adjust her milk of magnesia dose to make sure she doesn’t get “backed up”.  But so far, so good! 


She has certainly noticed that I am home more often and has decided it must be some sort of wacky, awesome perpetual weekend party.  I hear mom, ma, mom, mom, ma ma mum, mom, ma, ma…… well, you get the idea….


She is also loving having me around to hold her a LOT.  Apparently, she has been taking notes on my behavior for months.  She must have noticed how I always run to her at night with any little disgruntled sound she makes to put her bink in her mouth and wind up her bear mobile. She has paid attention to how I’m the love-to-cuddle her one who doesn’t force her to hold her own bottle (yes! Guilty!) and so now she has decided that having mom home is an excuse to get her way 24/7.


She’s a bright girl and knows what the word “no” means.  As testament to this fact, when we were at the optometrist earlier this week (oh, yeah, we went there too! Lol) she was wearing her glasses for the exam and she went to take them off her face to nom on them and was told “no” and had her hand moved.  The lip came out and trembled a little.  She reached her hand up slowly this time and again it was “no” and her hand was moved.  The eyes teared up and the already-stuck-out lip turned down and trembled even more as she wailed like her heart was crushed.  But…she didn’t try to pull her glasses off again.  She’s such a precious sweet heart!  Lord I love her!!


She has also started mimicking simple sounds and words with greater frequency.  Like “up”.  She amazes me with how clever she is.  If you ask her to find her belly, she will grab her chub roll and if you ask her where her belly button is, she will poke one little finger in her belly button and then grin at you like, “Here is is!  Found it!”  I melt at the sight of her smile.  I think she may be right about me- “pushover” is by nature what I am with her….but I am working on making sure I only melt when it won’t turn her into a crazy wild baby with no home training.


As for the ophthalmologist, she will still wear her glasses and be patched. I have ordered her some new lenses and she’ll be sporting her little pink frames again soon. In six months we go back to see if we can discontinue them at that time.  They are now only to prevent eye strain in the eye that turned in so that it can continue to strengthen. Her vision is normal.  So, once the right eye is as strong as the left, she won’t need them anymore.


Well, I am writing this during naptime (and its gradually drawing to a close) so I better go for now. I will post another update next week cause we have lots more appointments!  We have our yearly urodynamics study which will have us a Nemours all day!  Then our weekly PT and her one year shots and checkup. 


Plus, I found out that as an alumni, I can still use UNF’s library to print out some scholarly journals I plan to use as reference materials for the book.   This staying home business is keeping me hopping and I LOVE it! 

Thursday, September 6, 2012

Hello, Kitty!

We had Evangeline's first birthday party over labor day weekend.  Her paternal grandparents traveled up from central Florida and my parents were there as well.  Her two godmothers also attended and she had a FABULOUS time! 
I had a darn good day myself!