Window

There's a large window in my room.  Through it I watch eagles,  hummingbirds and all sorts of others.  I  see the garden in its colour full glory.  There are numerous trees in different stages of growth,  all colours of  green.  Children play and my beloved tends the garden.  Dogs sleep in the sun and bees check the vines.  It's very beautiful. 

When I think of how it used to be I am humbled and grateful that we had the opportunity to build this restful place.  The old house is still old but changed by our efforts.  Even though I'm not terribly sentimental I think about Norman and wonder if he'd like what we've done.  I think he would but only after growling 'too much work'.  I especially like this window.

Of course it's only a snapshot of life around me,  rather a lot like my instagram photos.  We only see what's within the frame.  I know there is a porch and the kitchen door nearby. There's a knobbly-kneed holly tree that drops leaves for unsuspecting bare feet walking by.  There are kids' toys, fishing gear,  tools,  boots and weeds just out of sight. There are also more flowers,  fruit trees and the best fire pit we've ever made. A little further on there are brightly-painted picnic tables,  the summer kitchen,  the cabin and the party tree,  full of memories of our many gatherings.  It's humble and sweet and messy. I wish everyone  could see it and know the hospitality of our home. Snap shots do not tell the whole story.

That may be what God thinks?, I wonder to myself.  Our vision gets narrow,  framed by daily duties,  needs and trials,  and our thoughts get trapped by Life. We can't see down the path and around the corner to the great gifts He has for us.  We get so absorbed in Life that we forget what else is out there.  He wants us to see it all. Like me wanting to share my home, He wants us to share in His fulness. He wants us to know the peace that comes when we accept His salvation. Even then we may have trouble,  but He pulls it together and makes it okay.  And then? Heaven: Bigger and better,  lighter and brighter than anything we can ever know in Life.  We will be released from our mortal bodies. We'll be renewed. I'll run, sing and make music again.  I'll see Him face to face.  Amen!

Now

There is very little to learn about CBD because there is very little known. Neurology as a field of study is vast but full of theory, it seems. Doctors explain it as a broken link in the chain of instruction that makes the body work. The break is at the beginning,  which explains why everything is affected,  and it is a long chain. It takes 6-8 years to break every loop. At that point, or earlier,  the sufferer will likely die from pneumonia since the muscles required to cough no longer function well. Eating is compromised due to bad messaging, along with the ability to walk and talk.  There are a couple of pages online where caregivers and sufferers share experiences and it is frightening. I keep hoping it won't happen to me but see too many examples like mine that I must admit it likely will.  While the future used to hold promise (that is, much to do once I'm finished raising kids) it now makes me cry. There is no guarantee that anyone has a future, though. When I was in my 20s and my father in law said 'all we have is now' I dismissed it. He was right.

All I  have is now. 

I have now to drink in a kind greeting or happy shout, rejoicing that I can still respond. I have now to play little games with my grandchildren as if we're sharing the best of jokes.  I have now to enjoy food and flowers,  sunshine and song,  and the many parts often unnoticed.  All the while I'm being tumbled through life like seaglass through the waves.  In the end I'll be something different because of the tumbling.  I'll be softer around the edges, probably more collectable than useful.  And, I hope,  more beautiful than ever.

This idle

My room is full of stuff I used to do. My guitar and mandolin sit idly by, waiting.  Various hand drums,  penny whistles, and my accordion also wait.  Felting, quilting and painting equipment call to me. These things enriched my life and met my creative need. Now I listen but don't play,  think but don't do, and wish my hands and feet to work. 

Hoping and praying for peace in this idle fills much of my day.  The rest of the time I think about and pray for my husband and my kids, sometimes pulling away so my heart pain doesn't hurt them. (Fear or faith response? )Then God calls others to mind and I pray some more.  My prayer is rarely the kind you hear at church,  poetic and rich. It is short, sweet and to- the -point prayer,more like a conversation.  This conversation had been ongoing for most of 50 years.  You'd think I'd understand better!  I must need to listen more I suppose.  That part of relationship has always been hard but I'm getting lots of time to practice now.  It's a lot like learning to play the violin: listening is the real work.  Playing well comes after you've listened well. 

Grateful

"I'll begin and I'll end each day with a thankful prayer and a grateful heart"
Muppets Christmas Carol

You? I do. Morning often brings a new struggle. Bedtime reminds me how sick I am. Working at gratefulness has to be a habit or I'd be nutty. Kind thoughts from friends over the last couple of days is very encouraging.  Thank you! Your words are important to me.

Grateful, thankful and happy live together, I think.  This lesson fell flat regularly with my kids and I wonder if I just didn't do it well. Faults and problems are so much easier to see after all.  When I came across the Muppet Christmas the music caught me.  That funny little song reminds me to look for and remember all the good things God gives. A toddler singing,  a beautiful flower,  a hug from an old friend,  a good meal, or a ride to wherever could be overlooked but these are the sorts of things that make life real and good. 

Some days giving thanks with a grateful heart is very difficult. I'm committed.  How about you?

Hi

I've decided to write again.  In case you want to know how life is in a broken body, this is where to look.

Yes I'm still here, alive, but not kicking.  These legs barely walk!  My left hand is curled into an angry fist and my right hand is stiff.  If you don't use it, you'll lose it? With corticobasal degeneration (CBD) loss is inevitable.  Muscle contraction , against my will,  shortens the muscles, ligaments and tendons, never to return to healthy.  This awesome chair allows me to get up and down, and stretch easily,  but the muscles are a little worse every day. 

Hyperbaric and laser treatments help to relieve symptoms. One local doctor thinks if I continue treatment it may heal me.   Time will tell.  In the meantime I'm out three times a week either sitting in a pressure capsule with oxygen or having light some into my hurting parts.  It's tiring but every little improvement encourages me.  Today my left foot is not as curled as it was. I'm looking forward to the day my heel touches the floor and my hand opens.  Who knows what I might do!

That's one of the hardest things about being ill: I am unable to serve. Serving was a big part of my life and gladdened my heart. I attached a lot of value to it and while I know there is worth in just being, I can't quite picture it. I need and welcome the service of others but I wonder if it's a burden or an honour.  Where is my value now that I'm so physically disabled? Am I valuable enough that you'd set aside time to talk and listen,  working out the details of life? Finish projects that my hands started? Play guitar so I can sing? Lift me in and out of a wheelchair so I can see the yard or the beach? Hand me a tissue for the tears? These are the things I notice and I'm grateful.  Small acts honour me and speak love to me, yet I wonder still. How do I fit in a world that values performance?