Sunday, April 3, 2011

Challenges of Being Limited By Your Body

I'm lying in bed with my laptop propped up on my knees...recovering from a very busy day of pushing my body's limits by having a garage sale.  I've been reflecting about how challenging it is to do fundraising projects when a person is limited physically.  It's given me a fresh perspective regarding my amazing daughter, Becky.

You see, I have Lupus; my body's immune system attacks itself and today it thinks it's winning. Lupus makes me have extreme fatigue...what i call "sick tired".  Like too tired to get up from a chair, but too tired to sit in a chair. It also gives me bad episodes of pain, especially when I do alot of walking, lifting boxes of junk at a garage sale.  
But it seems fairly wimpy for me to whine and complain too much.  I mean, if Becky never whines or can I?

Becky was born with cerebral palsy and arthrogryposis.  Arthrogryposis is a connective tissue disorder.  The simple way of explaining it: Becky's muscles were not attached to her bones in the right way and some muscles never even developed as a result.  When she was born, she had 2 dislocated hips which made it impossible to even put a diaper on her at first. Both her knees were unable to be bent and her kneecaps were behind her knees instead of in front. Both of her feet were clubbed with the bones of her feet being all jumbled up, going every which way. Several of her fingers had joints that were fused, unable to bend.  When she was born, she held her fingers in the sign language position of "I love you".  We took it as our first message that she was going to be a strong, loving girl with a determined spirit.  Well, she definitely proved we were right about that!

Becky has had surgeries on both hips, both knees, 2 surgeries on each foot, and surgery to put rods in her spine to correct severe scoliosis.  She wore casts on her legs for long months at a time and by the time she was 6 years old, she had been in casts for a total of half her life.  She endured being stretched after surgeries and would cry, but would then comfort me or the therapist stretching her afterwards.  Becky loved doing her exercises and had to be told to stop or she would exercise too hard & too long.  In one exercise, she would lie on the floor with a horizontal bar placed over her so that she could do "pull-ups".  She would work at it so hard, she had "white knuckles" from the exertion.  
She's always been a very stubborn and determined young lady.  When she had to use a manual wheelchair, she worked & worked at finding a way to make the chair go straight...because she could only use her right hand/arm to make it go. Naturally, it wanted to go in circles but Becky found that if she pushed it forward hard and then pulled it back a bit gently, she could go control which direction she went.  She's always wanted to go her own way, under her own power.

And she's never complained. Never whined. Always assumed that she could do pretty much anything she wanted to do...although she might have to do it in her own special way.  

So I'll take today to rest...I might take several days to rest. But I won't be whining or complaining. (much)  
I had to laugh last night. Becky called me and asked why I sounded sick.  I told her I was just very tired from the garage sale.  She was surprised!  She told me garage sales were easy to have and fun to work.  Compared to crawling the length of a house without using my Becky did...she's right.  Compared to being strapped in a standing frame and having to hold my body erect while also working out my Becky did...she's right.  

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