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 and get out of the car. 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. With it, you will rise taller and you will see with greater wisdom than you ever imagined the needs of others 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 breath they long for. Take your boulder and learn from 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. It will become sweetness to humanity and unfettered love of all mankind.

“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.

"His Workmanship"

The initial shock of Jonathan being diagnosed with ALS didn’t last.  There has always been an overriding feeling of peace that has always trumped the fear.  I can name many experiences when I should have been feeling extreme grief and sadness over such a debilitating disease and prognosis but those feelings simply are not there.  I should feel anger but I don’t.  As I have pondered why I find so much joy in this experience, Ephesians 2:10 comes to mind “For we are his workmanship.”  This disease was orchestrated by Him.

The Nudging of the Spirit to Blog

In recent months I have felt an urging of the spirit to blog.  This has been met with much trepidation.  I have fussed with the question in my mind of why?  Why blog?  My life experience has no greater value than those of any other.  Am I writing for posterity?  Therapy? To bear witness of Christ?  To lighten the mental anguish of the wife who flushes a feeding tube for the first time?  I cower at the thought of sharing because I feel boastful in my blessings, and yet so often I am broken.  I sincerely try.  I really do - most days.  I'm a normal human with a normal family doing normal things.  I go days without showering and eat a lot of cold cereal.  My kids fight.  I am a human caregiver, not a machine- I get really, really, grumpy when I'm tired and my disabled husband suffers because of it. I give him the silent treatment and jam forkfuls of food in his mouth and tap my toe because it takes hours to feed him, fingers are caught and bent painfully when I yank on a shirt sleeve while rushing to dress him, emotions get suppressed until they blow.  I grind my teeth when a late or middle of the night shower needs to given, and my good man says, "I'm sorry and thank you, " and my mouth says, "It's fine," but my mind and heart are bitter.  Yup,  that's me.  Are we impressed yet?

But I'm also the girl who once journaled this:

"I am so thankful for this disease.  ALS is one of the most cherished gifts a loving Heavenly Father has ever given me.  This disease alone has brought growth, SUBMISSION and joy unlike any experience I have had in my 38 years of life.  I am thankful.  I am thankful for everything this disease has done and continues to do to me.  I am beginning to see that I appreciate the struggle, the unknown, the tears, the depression, the loss, the days that I hate it, the days that it wins and I don’t, the fatigue, and the despair, BECAUSE IT IS CHANGING ME.  Like dough after being kneaded, when I am left to be still, I find myself rising closer to my Savior, Jesus Christ.  It is through this disease process that I have witnessed and seen first hand the mercy, and love our Father in Heaven has for me.  Darkness frequently makes itself known, but it doesn't last.  The light always comes."