Monday, January 9, 2012




I haven’t shared much about it for a multitude of reasons.  I don’t want to sound like a cry baby when I blubber that life is just so much harder without her help.  I want to protect her privacy.  I believe that my family…and all their unique needs… was Given to me and I should be able to care for them on my own.  I’m stubborn sometimes.  I also thought we’d be back to our “normal” routine by now.  It’s been months though.  And I didn’t know what to say.  Or how to say it.  Mostly, because I’m worried and I tend to hold my worry close to my heart.  It makes me uncomfortable sharing this, and I’m not sure why. 



So I’ve been quiet.



For the last five months my mom (otherwise known as Super Grams) has had a significant decline in her health. 



Five months ago she helped at least three days a week with Trevy.  They practically spent the summer in the pool together.  She gave me a weekly “errand day”.  Helped corral the kids whenever we had doctors appointments or what not.  Would be a substitute teacher when I was sick.  If I wanted spontaneous company on an errand, I could call and she’d be ready to join me in a heart beat.  And was always there to fill in any time I had a need.  She (and my dad) are the only family we have in the area.  And I really don’t have any one else who will volunteer to help.  Or that I feel comfortable asking.  Trevy does qualify for some “helper hours” so I can pay someone to help here and there.  But it’s not the same.  



And something happened to Grams. 



Almost over night.



Suddenly she was struggling to breath.  Her left side extremities are all weakened.  And a whole constellation of symptoms which surely must be connected and yet the doctor she was seeing didn’t seem to be putting it together.  And as a result she has yet to have a diagnosis or treatment plan. 



And she has yet to move back towards health.



I’ve been telling her for months that just because a doctor is the “chief of xyz” doesn’t mean he has a clue!  In fact, if we’d listened to the chief of pedi neurology at our local hospital Trevy never would have been a surgical candidate. I do have a little experience with navigating murky medical issues.  Alas, she followed my advice but only when it came through another source.  My dad’s employer offers a service called Best Doctors which they are using now to help guide their medical direction.  The nurse advocate told my mom she needed to be her own health advocate which meant aggressively pursuing a diagnosis and treatment plan.  And finding a new doctor.   



I was like, duh, I’ve been telling you that for months!






She has found a new doctor.  Who has ordered yet more tests.  More thorough tests.  One which is happening today. 



I’m hoping and praying that this test at least gives her more information than she had yesterday.  And brings her one step closer to health again.  Cause we want our Grams back! 




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