Writing the Good and the Bad

“Write the good and the bad”.  This was my mother’s advice to me some months ago.  I haven’t stopped thinking about it, wondering how to make the balance between optimism and realism.  Lord Byron said, “If I don’t write to empty my mind, I go mad.”  I’m long overdue for a mind emptying.  

It’s been a  l o n g  year for our family.  We are now settled into our new home back in the states.  The move from Qatar was unplanned but meant to be, although hard to do.  It has been good for our family in so many ways.  Especially for Mary Deane’s health.  After watching it decline for nearly a year I was relieved to get her feeling better with adequate care.  The biggest struggle with her (behaviorally) has been getting her to eat.  Most days she eats three pieces of cereal and nothing more.  After four years of begging, forcing, pleading, and crying on both our parts we decided to have a g-tube put in--a surgery that creates a hole in her abdomen giving direct access to her stomach.  The surgery and following hospital stay were nerve racking.  She did well but it took time to heal and is still pretty sensitive.  For the first time she can now receive all of her enzymes to help her digest and we can get in some much needed nutrition. I was so anxious to have the g-tube put in that I was completely blindsided by my emotional reaction to it.  One of the nice things about CF is, for the most part, you can’t tell she has it by looking at her.  It has been one of those things I’ve held onto, knowing that it would help her to have a more normal life.  But now, she has this plastic contraption sticking out of her belly--a visual reminder that her life isn’t normal.  That first week after surgery, she walked so carefully with her shoulders slumped forward as she scuffled her feet to minimize the pain.  My four year old had turned into a 90 year old.  I thought our days of tickling were over.  Brendon didn’t play with her the same.  He told me he thought he’d never be able to throw her up in the air again.  Even Clark had to learn to play with her differently.  I could hardly stand it.  I hadn’t prepared myself for such a loss.  But, that week turned into a couple of months and as she slowly healed we slowly learned the boundaries.  I’m happy to say we still wrestle and tickle but with caution.  Sometimes it ends with accidental tears but nothing a good cuddle couldn’t fix (gratefully).  I now stop whatever I’m doing to watch Brendon toss her up and hear her giggle--something I won’t be taking for granted.  All four of us, especially MD are learning to adjust.  We are learning tricks to help her (and us) no doubt guided by the spirit.  Oh life!  I keep waiting for that space of time when we can just coast but it’s not meant to be.  Instead these experiences just intensify the good and the bad.  And I’m learning to be okay with that.