I love this dancing man. And his love of rhythm... and Tow Mater’.
Six weeks before I gave birth to baby number 7, my 39 year-old husband was diagnosed with ALS. A terminal nuerological disease that before it takes your life, in 3-5 years, robs you of every capcity you own. This is one journey of being a wife to ALS.
Sunday, March 29, 2020
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’.
I love this dancing man. And his love of rhythm... and Tow Mater’.
Saturday, March 28, 2020
“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.
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.
Saturday, March 21, 2020
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.
Friday, March 20, 2020
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.
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.
Wednesday, March 18, 2020
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.
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