Tow Mater’ meets Clair de Lune

I sat at the computer desk helping Adam concoct his invitation for his Covid-19 Quarantine Virtual Group Date (the thing any new 16 year old does after weeks of isolation) and was quietly listening to Clair de Lune.  I paused for a moment and looked behind me to see that Jonathan, the sponsor for our music was quietly dancing to this musical master piece.

I love this dancing man.  And his love of rhythm... and Tow Mater’.

“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 issue was ordered.  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.

Islands In the Stream

This post has absolutely nothing to do with anything other than me flashing a wink towards my man in the wheelchair.  Kenny Rogers died today.  He was the legend that sang our song.  Every time I hear Kenny and Dolly jamming this tune, the corners of my mouth can’t help but break into a smile and I remember watching you dance to this song.  Here’s to my forever island.  Love ya Smooch.  

Pulmonologist in Portland

We met with Dr Schaumburg on Thursday.  What an absolutely terrific man.  If you are going to do something in life, do it like this man and do it well.  He spent over an hour with us just soaking up understanding and disseminating knowledge.  What a good and remarkable man.  Kiddos, let it be heard from the mouth of your mama, do it well. Essentially, we came home with the reality that trach time is here.  Anytime now, is the right time.  Processing that. That reality brings some highs and lows.  See my post about Mortal Boulders and my video below.  Highs and lows.

For now, this is a snapshot of us headed to the Pulmonologist in Portland.  It was a brutal drive for Jonathan.  His head support didn’t arrive when it was supposed to from our medical equipment company.  So amidst my efforts to tether his head he bounced around violently all 9 hours and needed a heavy dose of ibuprofen when we got home.  This is us in a really long van with no children to occupy the separating seats.  You can barely see that good man back there.

Mortal Boulders

To someone out there in never never land, I got your back. I don’t know who you are, or where you are or when this will find you. But I’m here for you. To the spouse that pulls in the driveway and is so numb they can’t get out of the car, I’m here. I hear you. I feel it. The suppressive weighted numb- I’ll hold it with you. I’ll lift. I’ll carry it. I’ll shoulder it, just leave it here with me so you can open the door. So you can inhale again and keep going. The hurt is real. The numb coats everything. It is everywhere and in everything. It lingers. It mutes. It abides. I haven’t figured out yet when it goes, I only know it comes. But I want you to know you got this. It’s okay to feel it. It’s okay to hold the hard. It’s okay to just absorb the uncertainty and the fear and the pain and the sorrow and the grief and the loneliness and the unrealized dreams and every other spec of all of this. You hold it close. You feel it long. You drink it deeply. You own every piece of it, because it is all yours to own. It is all yours to feel. It is your mortal journey. It is your path of becoming. It is the boulder that now weighs you down to the very darkest depths. But when this passes, because I promise it will pass, that boulder that now smothers you will become your anchor. Your rock. Your foundation. Your stepping stone. You will know ever square inch of it. It will become a forever familiar asset and with it, you will rise and you will see with greater wisdom than you ever imagined other acquaintances and with power you will love them. You will become their shoulder. You will lift where you once could not breathe and will be the breathe they long for. Learn it, feel it, let it become a part of you. Let it be a well worn, ear marked page in your journey. Don’t be ashamed of it. Turn to it. Reread it. It will become sweetness to humanity and unfettered love of all mankind. But it is heavy. So go ahead now. I’ve had lots of practice holding boulders of this size. Lay it here at my feet. I’ll watch it for you and it will be here when you get back. It is for you and you alone, but leave it here with me for awhile. I’ll keep it safe so you can rest.

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.