“You Got In Trouble Buddy But It’s Gonna Be Alright”

Cannons were blazing tonight.  The great and mighty pile of clean laundry was extricated from the laundry room into a mountain on the living room floor and an all hands on deck order was issued.  Amidst our efforts to haul out the clothing a puddle of water was found right in front of the washing machine.  Upon investigation a tear was located in the seal around the door of the brand new very expensive washing machine.  There are speculations as to how the tear was created, but, nonetheless, such a find elicited a Dad doozy.  The kind of tirade, seething, hot faced lecture only Dad’s come to earth equipped to give.  And boy did he let every which one of us have it.  As we tried to eat a hot bowl of (amazingly delicious thrown together miraculously turned out scrumptious) turkey soup we got MAD DAD ANGER.  I’m sure the kids have numbered his lectures by now, but this was the lecture regarding our lack of care for detail in caring for things.  Laziness in not being careful to take the time to take care of things well.  We tried to eat and listen and he let his cannons blaze.  Well, unbeknownst to me after everyone tucked their tails and tried to avoid being in Dad’s direct line for the rest of the evening, Aaron climb up next to Jonathan and wrapped his little boy arms around his neck.  He gave him a long and tender hug and let his Daddy know everything was going to be okay.  He nestled into him and let his Daddy know he was loved.

Tables quickly turn and Mom 😬 turns into the hot mess.  Trying to finish  washing white shirts for church tomorrow with a leaking washing machine, getting Dad a tube feed mixed up and bolus fed because he was too mad to try to eat dinner (although it is becoming the norm not to eat orally because it is getting just too hard) and mountains of laundry put away before the littles wreak havoc on them, it is then time to do the cough assist with Jonathan.  Aaron was out of control.  He was doing EVERY SINGLE THING humanly possible to try to torment every person in the family.  Every room in the house brought forth hollers for help because Aaron was doing something to cause problems every chance he got.  I was in and out and in and out and in and out trying to get him to calm down and get ready for bed.  I was just finishing the cough assist when Andrew came in with a bright red slap mark from Aaron.  I tore after him hollering about not hitting people and spanked his backside (which you know is business because I never spank my kids) and threatened his life if he got out of bed.

Crawling into bed tonight I nestled in next to Jonathan and he made the comment that he didn’t disagree with me getting after Aaron but he then relayed to me his encounter with Aaron after his own personal tirade and said this... “I just wish I could have turned back to him, scooped him up and said, ‘You got in trouble buddy, but it’s gonna be alright.’ And given him a great big Daddy hug.”

I just want you to know little Aaron, that even if you didn’t feel it tonight, that which goes out from you, will always be returned unto you. Your Mama may have your backside, but your Daddy has always got your back.  And if his big Daddy arms and legs worked there would have been a warm body lying next to you in bed nestled in close letting you know you are loved.   But for now, you need to be nice and take the time to take good care of your things.

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 effect 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 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.   Is it okay to just be sad and numb? Is it okay to hurt so bad I can’t breathe? To sob buckets of tears. Wanting distance, withdrawal, and the numb.  Lord, for now, can I just be sad?

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 learned 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 with an elastic strap 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 girl’s mind...

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.  Because, 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 perceive 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 thief 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.  Because 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.