Blue

I have been feeling blue lately. It is interesting to open doors in my mind and explore the rooms that lie behind them. The daily rigors of life keep calling to me to step back outside of the door and walk on, but there is something about being inside that room that holds me there. That wants me to stay. There is a numbing to staying in the doors of grief and depression. The numb acts as a balm and stills the need to process. But it mutes those around me. They, however, are not in the room with me and instead of finding reprieve from the numb they feel distance. Daily is a wrestle of where my feet stand. I think everyday there is foot in and a foot out. Is it okay to just be sad and numb? Is it okay to hurt so bad I can’t breathe? Tears, tears, buckets of tears. Distant. Withdrawn. Numb. Lord, for now, can I just be sad?

Comparing

I have to put down some very honest feelings.  The desire to record our experience on a blog is very, very much a two edged sword.  1.  I love re-reading our lives.  I love going back and reading something that I have forgotten about and having some of life's sweetest things brought back into memory.  It really is a source of joy.  2.  I have wanted a way to genuinely share what we have gained/learned and share with others.  When someone is diagnosed with ALS there are a bagillion questions a person has.  Our GREATEST resources are each other and I want to be able to lighten and lift the burdens of others in any and every way possible.  Becuase, although I have never, ever walked in your shoes, I have walked a similar path.  Fellow journeymen are a boon to the soul.

BUT - I am finding I wrestle with two very real things.  1.  I am not always the person that is captured in the post.  I am a person of a million moments.  I would never want someone to perceive a false sense of real.  I would never want someone to percieve a lack of authenticity.  And how do you really give a true and authentic sense of life in a few sporadic snapshots of the millions of moments that go by?  2.  Comparison.  Comparison is a theif of joy.  This is the real me talking here - I have found that as I read other person's blogs about ALS I find myself feeling like I am falling short.  Because of my own personal pride and insecurity.  Instead of really being happy for some people and the amazing things they are doing, I feel a sense of loss, that what I am doing is not enough.  That I should somehow pattern my experiences after another's.  That somehow by them recording and sharing their experience it somehow has more validity than my own.  I don't want to share to ever make someone feel this way.  It hurts to feel like you are not enough.  Becuase you are so, very, very, much enough.

And so I say this.  ALS is a sacred journey.  And each life is sacred and unique.  God intended for us to BE DIFFERENT.  God delights in the variation that is found upon the earth - He created it.  And He delights in each of us having our own journey.  Even if it is an ALS journey... let it be yours, and only yours.  And may you find life's greatest joy in finding, discovering, and being YOU.

Anna Seeing the Dad the Rest of Us Remember

This was so stinking funny.  Today after church Jonathan asked Adam if he wanted to go driving with him.  Adam is learning to drive the little brown truck that Jonathan drove for years to and from the hospital and church.  We all leanred to recognize the sound of the engine and the way it came to a stop on the driveway outside of the house.  We all knew when Dad got home.  It was a sound we learned to look forward to.

Anna has never known this sound.  Nor has she ever seen her Dad riding around in the little brown truck.  Jonathan is confined to his wheelchair all of the time and that is all she has ever known.  We managed to get Joanthan transferred into the truck and his head duct tape/elastic to the headrest of the truck.  Anna came out just as Adam and Jonathan were pulling away.  Her response was priceless.  We have re-watched this video 10 times and it still makes us laugh.  If I only knew just what bad word came to that little girls mind...