Monday, September 30, 2013

What I wish I had known, what I got right.

        So I have decided to make this post about things we  have learned the hard way with Feisty Pants.   Maybe the next parent at the start of the jungle ride can take a hint and not make themselves quite as frantic as we did at first. Things I wished I had known sooner, and things I'm glad I guessed right. (I pretend they're flashes of inspiration and wisdom, but I ain't even fooling me. I got lucky.)
       I wish I had:
          1)Lightened up sooner. At least, lightened up our toxic load sooner. Feisty Pants  is immunocompromised due to not swallowing properly.  So when we first brought her home I went nuts sterilizing EVERYTHING.  It was shocking to me to find out I was causing her to have problems by cleaning with bleach. Everyday. I am just bright that way.  I eventually learned that harsh  chemicals are as big an airway irritant as anything else. I learned to switch to all natural cleaners and things got a little better. I got a non toxic air cleaner (read that as not an ionizer) and things got better again.  I wish I had done that from the start.
         2) Not lightened up over what seems to matter.  I took up yoga when FP was a toddler.  One of my best decisions ever. But I'm completely self-taught and NOT a size two.  So when others came by and I was trying to squeeze in a few poses, I would stop out of self -consciousness. Took me a while to not do that.  Now, screw it. You come by when I'm busy I just keep working.  If that means you see my chubby fanny in the air trying to do a downward facing dog. So be it.  Don't laugh out loud.  That yoga is what keeps me from hitting people with sticks.  Same goes for when I am signing petitions or annoying my congresspeople with emails.  I believe that if I want to raise moral children I had better damn well  try to exemplify those morals myself.  Change starts with me. And since any work I don't finish on time means I am giving up sleep, felony assault might begin with me too.  And lest I sound just bitchy, think of it this way. What would your response be if I walked into your job, sat down and put my feet up on your desk and wanted to kill some time?  This zoo is my workplace.
          3) Not expected Doctors to tell us all our options.  Silly Mommy and Daddy, we thought doctors would tell us everything there was to know about FP's condition and all the treatment options.  Her case is complicated.  (I could give the string of initials for it, but lets just save time and leave it at severe spastic CP) A good percentage of the time they don't know which options are best- or even all that are available. And sometimes, they don't want to tell you because the best option is only available at a competing hospital or they know your insurance will not pay for it in a million years.  ASK QUESTIONS- pushy annoying questions.  A LOT.  And make friends with google (or bing or whoever your fave search engine is). 
        There more things I'm sure but those three I think about often. As for what I'm glad I did, I am glad I:
            1) Stuck to my guns.  Lots of doctors and several hospitals wanted me to have Feisty Pants trached (a tracheostomy- a procedure where a hole is cut in her neck and a tube placed in it).   Every instinct I had sceamed NONONONONO.  So I didn't.  And when we said no, several got a little annoyed. A few sent in social workers and case managers to "explain things" to me.  I found my response was to become almost inexplicably angry. So I point blank said no and that if necessary I would consult my attorney.  I then took her to a better hospital (after researching on google). And lo and behold, I was right.  I was lucky enough to get FP into one the best children's hospitals on the planet. And they told me the other doctors were not considering other less drastic options.  (Probably out of fear- the right option involving waiting to do the right procedure for a what turned out to be a few years, which they were afraid to do)But for the record, we all waited until she was strong enough, removed her tonsils and adenoids and BOOM- we went from 50 hospitalizations to NONE.  She still gets sick but not so badly that she needs to be admitted. And no scar in her perfect little throat.  (Shut up, I take my victories where they come no matter how small)
          2) Kept the critters.  Everyone told me to get rid of our cats and dogs.  But this journey is not just about keeping her lungs clear. It's also about rewiring her brain. Pets teach us a gazillion things about love and joy and empathy. So we went home and ripped out all our carpets. I don't know anyone who has fond memories of their first stainmaster.  Two things happened- one, Hippie Pants' allergies got better and two, turns out Feisty Pants is not allergic to cats and dogs at all. Always question the killjoys.  Always.
           3) Listened to one great piece of advice from a not-so-great personality.  We had a consulting neurologist come in when FP was in the NICU.  A pretty good doctor.  Personality left something to be desired. ( I am convinced most neurologists have some kind of personality issue. )  But you know what, I don't care if you look like a cave troll or have the personality of Dr. House- as long as you have his brains.  And what this person said was"With a brain injury of this type, it is never a matter of what's gone.  It's always a matter of what you get back" It was a lightning bolt to my soul.  It took that moment to realize I could dwell in her disability or dwell in her possibilities.  And that makes all the difference.

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