Sunday, April 20, 2014

a bit worn


So there's an expression I borrowed from Ralph. He picked it up while sauntering past the home ec sewing class in his highschool days.  "Keep it threaded."

There's a story there, but I'll leave that for Ralph.  Suffice to say, I've adopted the expression as a mantra of encouragement, most often when I'm talking to myself.  Don't go getting unraveled, girl.  Keep it threaded.

It's been over two weeks since Rachel was in school (argh), but thankfully, Janneke has been back to entertaining her teacher and therapists.  I've been spending a lot of time with Rachel; the photo above was taken by Soph.  I think I can read Blueberries for Sal from memory now.  

In this latest season of continuous illness/discomfort for Rachel and Janneke, the fabric of my being feels worn and my soul ragged.  I don't like admitting it for fear dear ones will to want to fix things for me -when often, I just need a listening ear.  Or a kick in the pants.

In these last few weeks, I can also see how the lower energy levels tempt me to envy the lives of friends or family around me, craving what looks to me like an easier way to live and laugh.  I know, not helpful.

There are good things happening - the weather is warming up, I've been able to run again, and we've tried to step away from the house for date with either the two of us or with Em and Soph.  That is helpful.

It's Easter weekend, and I find myself thinking about the people living at the time of Christ who were convinced He would make everything right and good in that moment, overthrow the Romans, etc..  But those people didn't see the bigger picture.  They were caught up in what they defined to be powerful, important, and significant.  And I can't help but see myself in a parallel circumstance, eagerly desiring what I think should be restored and how things could be made better.  But, I must trust the bigger picture and know that there is power in weak moments and seasons of sickness.

Keep it threaded. Yep, caught myself saying it aloud while grocery shopping the other day.  Soon, this season will pass; it will either return to "normal" or we will adjust to a new normal once again.

A couple of snapshots from the last two weeks:


Rachel loves the read-aloud stories on iBooks.  Janneke turns her whole body away from the iPad if we show them to her, but when we show them to Rachel, Janneke shows interest.  


Rachel started Botox treatments in her legs as a trial to see if her legs will relax for her AFOs and weight-bearing therapy. (Go ahead and google that if you are curious.) The spasticity clinic has a bead program similar to the cancer care clinics.  These are Rachel's beads: her beads tell others that she has had surgery, serial casting, OT and PT involvement, and, of course, of her upcoming birthday.



I have the girls outside more often now that the weather has become warmer.  Even as both girls were not well, I put them outside - either for walks, swings, or sit-in-the-sun time.  


The Brand family came over, and Rachel supervised the work of shoveling soil from the trailer to the flower beds.


Janneke was content to explore her ball handling skills.  She pulls away from toys (and the iPad), but she loves to touch texture - and the basketball is perfect. 


We've had a few appointments at Mac and the doc - some planned and some last minute. There are a few more to come in the next month that will hopefully help us understand the pain issues for Rachel and the saliva management for Janneke at night.  Gotta keep it interesting.

Gotta keep it threaded.

peace to you,
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