Thursday, November 1, 2012

halloween week... transfusion?

A friend's mom made these costumes years ago
Tough week already landing on a Thursday.  I planned to write about the holidays, but this week reminds me that there are more weeks than holidays that turn out much like this one.  See, during the holidays we're often exhausted as we don't usually have much help with Abby.  Everyone is with their families and friends as they should be, but we're often left exhausted as we try to participate in the festivities in addition to the regular cares of a disabled child.  This weeks circumstances were similar to a holiday as I was left with a sick, cranky and unpredictable Abby and no one really available to help.  As my struggle reached desperation tonight, I plugged in my yoga and gated Abby in her room with much less resistance than I anticipated to in spite of my needless guilt of "locking her up," I realized I was a better caregiver and mom if I got some exercise and a shower!  It's amazing how quickly I can reach this point without realizing it.  I keep expecting the best.  Surely, she wants to cuddle... Another band-aid.  I finally had to stop answering my phone, turn off the lights to a torn up room and try to deal with it again tomorrow.  I don't ask for help because I think it will get better soon.  She's so unpredictable that I keep trying different things and expecting something to be that magic potion.  Not so much...
how can such a stinking cute peanut not be happy with this costume?

I'm a bit extra bloodied as Abby has "needed" her mama this week.  She's basically stalked me all week.  On one hand it's cute that she wants to be on top of me wherever I am, but on the other, her aggression has also been sporadic and painful.  I've actually had four or five band-aids on me at a time to stop the blood from getting everywhere.  It's weird, though, because she wants to be next to me and has been really affectionate too, but then grabs my skin to tear it without warning.  i want to throw her off of me!  One moment we're cuddling as I sing to her (it's not pretty but she's always appreciated it) or read her favorite books and the next she is digging in!  I think sometimes we don't realize where she is until a holiday or a week like this where I have her for days on end in addition to being a wife and mother to two other gals.  The switch off with help makes it less stressful, but without that I can sometimes lose track of the reality where she is... Hoping this is a bad week and we'll get back to Happy Abby.

She started throwing up Monday night, but after over thirteen hours of sleep she seemed to be okay when she woke up.  I sent her to school late only to be called a couple hours later because she seemed out of breath and was yawning which indicates her need for air or precursor to vomit.  I was headed over there when the school called back and said she seemed fine and was eating.  She hasn't had much of an appetite in general so I thought it a good sign that she was hungry.  I kept her home today after a not-so-herself day on Halloween.  It's not unusual for her to have a hard time with a change in schedule in addition to everyone "looking" different.  She doesn't appreciate the whole costume thing, but we keep trying :/  What do you do?  She definitely is stuffed up and has needed her nose wiped and breathing treatments today, but what really takes it out of me is the fact that I'm bloodied and tired.  

So... I often tell people that my pains don't lessen theirs.  It's okay for them to be hurting and tell me, but I neglected to take my own advice this week.  I talked to a friend who told me she cannot take her son out alone anymore because she can't control him alone, so I decided Abby wasn't bad and scolded myself for being annoyed at "some scratches".   There aren't words to comfort my little girls when their sister hurts them.  It breaks my heart, but what can I do?  Where are the books to tell me where to put my child when she goes from hugging and kissing to a death grip on my arm drawing blood as her nails dig into me?  I dwelt on my friends pain willing myself to ignore my stuff.  I compared.  It did nothing to make me feel better other than focusing on someone else. 

Another friend checked her child into the hospital for the upteenth time in the past six months... or has it been longer?  Her girl has a chronic illness, but my words today seemed to fall so short of sufficient support as they've been spoken many, many times before.  I wondered as I felt helpless to offer anything to her if others feel that way about me? Like hers, my story is not a new one.  It's been and it will be again, but how do we not grow weary in supporting the chronically ill or disabled?  I still fall to my knees for that sick girl, but why didn't it seem like enough today?  I beg the one who has answers.  I take the time to say a prayer with my friend because seeking the Lord together never grows old. I pray for Him To draw her to Him as the only one who can truly bring comfort. 

I'm such an inadequate display of Him, but I must keep striving to be just that... over and over and over again no matter how well I do or not.  Lord, may I not grow weary in comforting those who suffer.  When I see the suffering around me may it break my heart afresh each time.  My story gets old for me as it does others.  I'd like a different challenge or struggle, but that isn't what I've been given.  We support those in our lives in the stories they are given rather than just the new ones.  Sticking it out in this life and being there for the long haul is what I need.  Holding that hand for the same struggle for the upteenth time.  Crying fresh tears from a soft heart rather than a shoulder shrug from a reoccurring story.  Loving each time as if it was the first. 
...Break my heart for what breaks yours, Lord. 

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