Who put their lights up NOW?!?

            So, we put up our Christmas tree yesterday.   I'll take that moment of stunned silence as you comprehending the awesomeness of early Christmas cheer and NOT that you are thinking we're nuts.  I like to think of us as harbingers of yuletide joy, y'know, like a crocus in early spring. You're welcome.   Besides, the universe must have approved. We put it up last night and woke to  GLORIOUS snow on the ground.  Not enough, but just enough to frost the landscape like icing on my cake.  I willingly and gleefully with all malice aforethought, admit to being one of those freaks who LOVE winter.  I would put Jack Frost and Baba Yaga on my Christmas card list if I could.

             But seriously though, this post is actually about explaining a little of why a lot of families with disabled members seem a little wacky.  For us, the Christmas tree saga goes like this, Feisty Pants spent every Halloween and most of November in the hospital every year until she was six.  Several years she was in and out in December too.   And the last half of January.  And my birthday in February.  And usually Easter too.  (She has been discharged on Eater Sunday so many times she should get a Jesus discount on the bill.)But I digress.   Kids need and thrive on some form of routine. It gives them a sense of faith about life and the universe.  Sunday will follow Saturday, the sun will rise in the morning, Wednesday is meatloaf night, Mom will shout every time you shave the dog.  That sort of thing.  But if you never know when you will be calling the paramedics and rushing off to some ER, your routines get blown all to hell.   You learn if you need to count on getting anything from dishes to holidays done, you'd better get them done and no procrastinating.  So you learn to redefine flexibility and you adapt.   Dinner together is important, so we have to be open about the definition of dinner. To fit in around appointments and jobs, we eat one meal a day together no matter what time it is.  If that means it's brunch at 10 am or a late supper at 10 pm, so be it.  And with Christmas, well, we have had Thanksgiving dinners in hospital rooms and Ronald Mcdonald Houses, Easter in many Chinese restaurants and no batted an eye.  But no Christmas tree breaks my daughters' hearts.  And after a near miss of not having one, they called a family meeting.  So now we put our tree up the first day in November that we can all get together and do it.  Usually that means Veteran's Day- no school, no therapy appointments that day, you see. 

               And I have to admit, in my heart of hearts, while we do not do it to bug anyone, there is a tiny thrill about the defiance of being obnoxiously cheerful.  When things seem really dark and awful, and you don't have much to make you get up and put one foot in front the other, defiance will keep you moving.   When you are told that your child is "neurologically devastated" and not likely to "ever do much" , there is a part of you that has hard time not applauding when she willingly misbehaves.   When you are warned when she is six weeks old that you "need to know that you are probably taking her home to die", putting that damn tree up early anyway, while she giggles at Goo swearing at lights is an awfully fun way to give a giant christmas tree light encrusted finger to the killjoys of the universe.   You gotta learn to take your victories and joys where you find them.  Happy Holidays!  Every last darn one of them.