The Christmas Story

Every Christmas Eve of my childhood as far back as I can remember, my dad would open the Word and read the Christmas story to us from that beloved old passage, Luke 2.

My mom always had candles everywhere - different, beautiful pieces (nativities, candelabras, sleighs, for example) - so the two main rooms were aglow with soft, flickering candlelight accented by the twinkling lights on the Christmas tree. The smell of cinnamon rolls rising in the kitchen wafted through the house. We would listen to Dad read Scripture with familiar, cherished cadence as we sat around him in a circle. Candlelight cocoa and cookies followed, fresh from the dozens we'd made with Mom to enjoy and to share with many people.

These Christmases will always be a treasured part of our beautiful childhood. I got to relive this with my children in 2014 when my parents stayed over Christmas Eve into Christmas Day. I'm so blessed that my children get to share this memory.

Yesterday, my dad read to us again. He had some difficulties, which broke our hearts. Still, even that could not take away the sweetness of what has been a lifetime of this man leading his family in God's Word. Yes, we've grown and changed - sometimes a lot. Even so, we still seek the Babe who came so very many years ago. <3 

<3

Thank you, Dad, for always reading the Christmas story. Thank you, for passing along sustaining faith. Thank you for being the strongest man I have ever met, in years past and still today. I love you forever. I love you for always. As long as I'm living, my Daddy you'll be. :')

December 15, 2016 (posted later)

I am trying to figure out how to word this carefully. My dad had more testing done today, which yielded more bad news. Please bear in mind that - even though we know he has a motor neuron disease - this is still quite a lengthy process of confirming it to be ALS. This is why we only know things in pieces. We are learning as we go. I hope that makes sense.

Today's test was a video swallowing test. This means that they squished dad into a space between plates so that the specialist could take images of how his body works during the swallowing process. They tried out various liquids at various thicknesses. The results, while we expected them to be 'off', were better described as devastating to us.

They found that he already has significant impairment/swallowing difficulties. Instead of waiting for worse to come, he is already being put on a pureed foods restriction. He can have liquids, but they need to be thickened. If this does not help him to stop coughing, they are going to have to put him on a feeding tube. :'( :'( :'( They believe that decreased airway protection is mostly likely the epiglottis failing to close properly. Again, this goes back to nerve death. :'(

The problem is that food (even pureed, but we hope and pray not) can go down the 'wrong pipe' so-to-speak. This would put it into his lungs. That wouldn't just be bad, it could be catastrophic. They said that pneumonia for someone with ALS can be fatal. We absolutely MUST avoid pneumonia!

We have all noticed that my dad's tongue seems to get heavy in his mouth. He begins to slur his words. His tongue also ripples or 'ticks' on its own accord when he sticks it out. This is one more characteristic which makes ALS likely. He is having enough trouble that they want him to see a speech therapist. Going out to the hospital to see one would be another exhausting endeavour and, frankly, too hard on him. We are praying that they can find someone to come to the house to work with him.

Anyway, that is the gist of today's news. My dad's rapid decline continues. :'( It is going farther, faster than we ever imagined. Mom is an absolute rock, getting him to as many appointments as they can give her as quickly as possible. The official diagnosis is important because it will inform the team of doctors how best to move forward with his care. For ALS and any other MND, quality of life is the big focus.

We are all in a completely new and foreign phase of life, with my parents (and especially dad) at the epicenter. We are learning about the next steps, even while my mom is focusing on one day at a time.
My dad is going to need so much care. We are all here for them as much as possible, of course.

Please keep them covered in your prayers as often as possible. We are asking and praying for God's mercy and strength. We never thought at Thanksgiving that we would already be discussing feeding tubes and end of life care. God help us. :'( He is good in all phases of Life. May the Lord be praised.

"But it is good for me to draw near to God: I have put my trust in the Lord God, 

that I may declare all thy works."  Psalm 73:28

MND - Motor Neuron Disease and My Dad (Dec 15, 2016)

****I posted this to FB on December 15th, hours before learning more about my dad's condition. I was told to write down what we are going through. I had done some already, so these first several posts are from that. By the time I posted this, it had become clear to me that people understood that "something" was wrong with my dad, but not "what". Indeed, the information we pass along is fragmented, because we are, ourselves, learning as we go. As of this day, we knew that my dad had an MND... a motor neuron disease. This was how I expressed that to friends and family.****

December 15th:

It is sometimes hard to explain what an MND is in simple terms. Days like today, I am too emotional to put it all into words anyway. So, if you find yourself wondering what is happening to my dad, think about Stephen Hawking. *That* is what is happening. It is a disease affecting specifically the motor nerves. Whether or not it is specifically determined to be ALS, *that* is what is happening in his body. It is closing in on him. This is why his body is 'stopping' on itself, even though he is fully mentally capable and will remain so. 

MND's are progressive and incurable. Eventually, his lungs will quit breathing. This is not me being pessimistic. This is fact. He already struggles with breathing now, which is one more reason we are all so affected and scared. The thing is, my dad doesn't have Stephen Hawking money. (ETA: Hawking has a slowly progressing type of ALS which contributes to his shockingly long life. I did not know that at the time of posting this. My apologies.) We are all dedicated to figuring out how to give him the best care we can, though. Count on that. 

God is big. He is mighty. He will see us through. That said, we are going to need all of the love and care we can get - but especially my parents. Don't talk about them: talk *to* them. Show them love and grace, even as you pray for love and grace on their behalf. This is a stressful, exhausting, overwhelming, and lonely time. May the Lord get the glory in all things.