Showing posts with label living with ALS. Show all posts
Showing posts with label living with ALS. Show all posts

Tuesday, February 14, 2017

My Daddy's Voice (crazy-long post)

My dad is a bear of a man. :) He always has been. Long before he met my mom, he had a reputation for his size and strength. He lived a life outside of what you'd expect for an eventual preacher. That is, he and his brothers ran around with what people then called 'the wrong crowd'. They enjoyed parties and the lifestyle that came with it. 

He was also what you would call a 'concessionaire'. He worked for a friend's company. They traveled around to state fairs, making and selling taffy. Standing heavy 500-pound barrels of syrup was nothing to my dad. This man of immense strength knew of nothing he couldn't do, once he had decided to.

At some point, the partying and drugs didn't do it anymore. He said that he would look around the room into the eyes of his friends. Everyone was smiling but nobody's eyes reflected true joy or any sort of happiness. It was clear in each of their faces that there was sadness behind their eyes.

About a week later, my dad and his brothers left a bar in the wee hours and decided to visit friends. These two men had recently gotten saved and kept in contact with my dad and uncles. They had offered a standing invitation to visit anytime. That night, it seemed like a funny idea to wake them up. Only one brother was serious about talking with them. They took a vote, and my dad and his little brother agreed to visit, just to mess with them. 

As it happens, their mother had fallen to her knees that very night, crying out to God, "Lord, I cannot get them out of drugs and alcohol. You're going to have to!" God filled her with peace, and she went bed without any further unrest.

The friends were welcoming and talked all night about the changes they had seen in their own lives. It really stuck with my dad and uncles. The friends then urged them to attend a revival service at a local church. All three of them went, listening intently to the preacher. My dad and his brothers found God that night, confessing their sin and promising their lives to Christ. 

Dad cut his hair short (up to his shoulders), began attending church, praying, and reading the Word. It wasn't too long before he went to Bible college, where he met my mother and surrendered to preach. (Perhaps not in that order?) 

His brothers, too, had joined that same church where they had gotten saved. Together, the three of them straightened up their lives. It is no surprise that all three of them attended the same college. I even have small clips of them singing with the Bible college choir. <3 <3 <3 My dad knows something about God and how real He is because God literally changed his entire life. 
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Fast-forward to the 80's and 90's where I am growing up a preacher's daughter. To this day, people talk about how 'strict' our upbringing was. It always makes me laugh inside. The truth is, there were a lot of rules. However, it never *felt* strict. Ours was a home that rang with love and laughter day in and day out. 

My mom was absolutely born to be a mother; she is the greatest that ever lived! My dad, too, has an uproarious sense of humor! lol For all of the rules I admit we had, we were so love-bathed that it honestly didn't seem like anything abnormal. 

One part of being a preacher's kid is pastor's fellowships. If you or your family is in the ministry, you know exactly what these are. A pastor can get discouraged over time if he is not tending to his own needs. People hold you to an impossibly high standard, forgetting that you are no less human than the rest of the world. They can be cruel and ugly without a moment's thought about your personal feelings. 

Once a month, pastors gather together on a Tuesday (in our case) to fellowship, preach, and pray together. There are always several key note preachers. This can be a short day, where breakfast is served and a few preachers take turns, followed by lunch. It can also be a full day, with sermons before and after lunch into the evening. However it goes, it is a loud, encouraging day that gives these people the strength and energy to go through another month on their own. Several times a year, the fellowship is even larger, taking place on a regional and national level. 

Now, in my denomination, female pastors are pretty rare. Every pastor belongs to an independent church, so even though they gathered to encourage one another, no formal organization existed. You might have called it a 'boys club', of sorts. Wives came along sometimes but not always. Children came along even less frequently. Being homeschoolers by then, my sisters and I went to a lot of preachers fellowships. (Seriously, SO many!) I always really loved the experience.

You see, when that many men gather in one auditorium to sing, the result is utterly astonishing. The room reverberates with the noise of praise! It is energetic, uplifting, and inspiring!

No matter which church, which state, how small or large the crowd, my sisters and I could *always* pick out my dad. It didn't matter where we were sitting. :) He has this deep, echoing voice. It is masculine, guttural, and booming! His voice is an audible testimony to the profundity within. It reflects who he is so perfectly.  Simply put, NOBODY has a voice like my dad! <3 <3 <3
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ALS has stolen so much from us. It has stolen my dad's strength, although not his strength of character. It has stolen his mobility but not his ability to move people. It has stolen his independence of person but not his independence of spirit. It has stolen his physical steadiness but not the Everlasting Rock on whom he leans. It is stealing the smile from his face but not his heart. It has changed his gait. It has stolen even his ability to simply 'live' a normal daily life. ALS is a monster. It is the disease you do not wish upon anyone.
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There are some songs which are simply iconic to my dad's voice. I can hear him booming out, "GLORY, I'M SAVED!!", "Deeper Than the Stain Has Gone", "Blessed Assurance", and many others.

Last night, I was playing Mario with the girls and singing aloud. I *needed* to sing. It allows me to get some of that stress out of my heart. For a minute there, I was really belting it out. haha

My sweet little Koala complained, "You are singing too loud, Mom!" That made me laugh. I explained to her that I have very healthy lungs, which came directly from her Papa! :) I began to boom out a song in my very best Papa impression:

"GLORY, I'M SAVED! 
GLOOOOORRRY, I'M SAAAAAAVVVVVEEEEDDDD!"

It was then that the wind was knocked completely out of me. It sucked out as though I'd been hit square in the chest with a car. I went into the silent, gasping ugly cry, followed by the soul-deep wail of pain that has become all-too familiar. I had to leave the room for a while and try to figure out how to collect myself. It was everything I could do not to throw up repeatedly.

"I will never hear my daddy sing again!!!"

Lord help us, ALS has stolen my dad's voice. :'( The worst part is, I already knew this. We have all noticed how quiet he has gotten. He has to work excessively hard to speak at an almost-normal pitch. In fact, he describes this as yelling. :( I so hate that for him, but I did know that his voice was gone in that context. 

Somehow... somehow, it had not hit me that I would never hear him sing again. I will never again sit in an auditorium, rich with the voices of a sea of men, and pick out my own dad's voice in the bunch. I won't recognize his "Amen!", his laugh (so distinct), or his cough across the room. I won't get these things, not because he has died, but because this horrible disease has stolen them from him. 
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I cannot let ALS have his voice, though. I just can't. Every time I talk about him, every time I relate a story of his (like this, his testimony), every time I merely think of him, my dad's voice still echoes on. It is booming out there today, in the words we speak. I will hear it every time I realize that my kids have healthy lungs. ;) I *will* still hear him in crowded auditoriums. I will hear him in any and all church buildings. I will hear him at family functions. I will picture him seated there, singing with all of us, as he has done so many times in the past. I will hear his voice cross the divide between us, to the day I die.

God, forgive me for taking this voice for granted. I praise You for the times I got to listen to my dad sing. I praise You for making me the sentimental type of person who really leaned in and listened to him every. single. time. These things have seared his voice forever in my heart and my soul.

No. ALS will rob us of so much, 
but it will not rob me of the 
precious voice of my incomparable dad!!


My dad and his brothers singing with their college choir.
This one cuts off suddenly. I cannot help that, as I copied them from an old tape.

We have started a GoFundMe Campaign on my dad's behalf. Please consider sharing it on social media.

Monday, February 13, 2017

It Hurts

I. Hate. ALS.

I cannot overemphasize just how much I hate this disease! Even the word 'hate' suddenly seems not to have enough strength behind it to accurately describe just how I feel about this.

I am in pain! We are in pain! We are hurting, every breath, every moment of every day! My dad is suffering! He is miserable! His body is disappearing before our very eyes! My soul, he is really dying! :'( 

"I can't take it, I can't take it! God, TAKE THIS FROM HIM, PLEASE!!"

I. HATE. ALS!!!

My daddy had complications on Friday night which lead to his (possibly) hardest day yet on Saturday. :'( He feels *so* weak. He is miserable. He became discouraged. His voice cracked into tears when he said,"I just don't feel any hope."

*soul-deep screaming*

My daddy is hurting! My daddy is miserable! My daddy is DYING!!! What the heck, universe?!?!?! Where did this beast come from? Why is it robbing my family of my one and only daddy? My soul in heaven, why is it so FAST? Why can't it be stopped? 

Forgive me, please, if you read this and get offended, okay? I am about to go on a rant. 

Medical cannabis (as in, prescribed and dispensed through a doctor's care) of a certain strain has shown, not just to help make persons with ALS more comfortable, but to also act in a neuroprotective way. It *improves* the quality of life. Some motion is regained. Life is a better length and, more importantly, a better quality. 

WHY is this not legalized, yet? Why can't a doctor simply write out a prescription and make my dad's life easier? It is funny, isn't it? The little Christian girl, who is begging God to find a way to get this relief for her pastor dad? Only it isn't funny at all. :'(

This world seems to be SO stacked against ALS! Medication is in the test phases and elusive. There is no cure. A person's body becomes their sarcophagus. It is horrifying to think about, let alone to witness or to go through. We need a cure. We NEED a cure! 

May God be gracious to my dad. May He grant strength, peace, and calm to replace the misery which comes with this wretched disease. May we find hope in His care. May we find comfort. May we find relief. <3

We have started a GoFundMe Campaign on behalf of my dad. Please consider sharing it on social media.

Wednesday, February 08, 2017

Keep Breathing

I am so excited to report that my dad gets to have breathing equipment!! <3 <3 <3 

This is a bittersweet development, in its own way, but is a blessing more than anything. :) Of course, even a few months ago, I never imagined that the beginning of this year would open up with my dad struggling so hard. We all hoped that this ALS steam engine would slow down. It hasn't. At this point, we will take everything that we can get. :) 

Having breathing and cough-assist machines means that my dad will not have to struggle so hard. It means that he will not have to have the temperature of his home fiddled with all day long. It means that he will have the energy to face a meal! That could mean that he eats more. Oh, praise the Lord!

He has lost so much weight and continues to lose steadily. It is *so* important to he and my mom both that he does not drop below a certain amount. We are all praying that these machines will aid with weight maintenance, at the very least. <3 

We are also hopeful that these machines will help him to truly rest at night. He needs sleep, desperately! He is up roughly every two hours, just like a newborn. My mother is up with him, often opting to sleep on the couch next to where he is laying in his mechanical recliner. This causes her no shortage of pain, including a neck ache which has ceased to go away. I am praying for her comfort, as well. 

We have started a GoFundMe Campaign on behalf of my dad. Please consider sharing it on social media.

Monday, February 06, 2017

Prayer and Supplication with Thanksgiving

When I visited my parents this weekend, I got to talk to my dad about his thoughts and wishes. I tried to absorb as much as I could. There is one thing he said which I took particularly to heart. He impressed upon me the importance of making my prayers to God (on his behalf) with thanksgiving. 

Now, any Christian who's been in the Bible or a church for any length of time can quote this verse: 



It struck me that, even at this painful stage in his life, my dad would still be exercising his skill sets both as pastor and parent. 

He knows me very well, this man. He knows that I have struggled with the effects of PTSD and anxiety for a long time now. He also knows that these things cause me no small amount of fear. Even my prayers can become fear-based. 

It was important for him to remind me that we can cast *all* of our cares on the Lord, even the scary life-threatening things. We can come to God in confidence:

He wants my prayers to the Lord to be made with confidence from a thankful heart. He doesn't want me to be drowning in sorrow to the extent that I cannot see God's love, mercy, and grace during this trying time. I *do* exercise faith but it is true that my fear can sometimes overwhelm that.

This morning, when I sat down with my girls to read the Bible and to pray for my dad, his words echoed through my heart: 


"Just be sure that you are praying with thankfulness. 
I want us to be thankful in all things through this. Our God is so good."

Our devotion today was in James chapter five, which was a timely blessing. Several verses, in particular, especially reached into my soul.


11 Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful, and of tender mercy.

1313 Is any among you afflicted? let him pray. Is any merry? let him sing psalms.
1414 Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord:
1515 And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him.
1616 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much.
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Just about everything I was reading and thinking about this morning before we started the day was pointing to fine-tuning my prayer efforts. It was a good and timely reminder for me. I was able to go into my prayers today with calm and peace, knowing that God can answer them in His own way and His own time. We call that special feeling 'the peace that passes all understanding'. It is when unnatural peace and calm flood through your body, heart, and mind.
I am also reminded that I have seen prayer work. This is why nobody can tell me that faith is just misunderstood chance or the hopeless delusion of a week mind. 
For example, when I was carrying Giraffe, toward the end of the pregnancy I would wake up in the middle of the night positive that she was going to die at birth and I would never meet or get to know her. I mean, I would wake out of the clear blue, deeply convicted of this and sobbing my eyes out. 
Every single time this happened, I woke Chris and begged him to pray that she would survive her birth. He never once failed to wrap me in his arms, praying there in the dark that our child would survive her birth and live a happy life. When the day of her birth arrived, we endured trauma which caused her heart to stop beating within me. Her delivery was horrific. It is an experience I would never wish on any mother and child. Even our doctor admitted to Chris later in the year that he was supposed to go home alone that night, leaving behind two body bags. 
Miraculously, she was revived! By the grace and mercy of God, Giraffe and I both survived. My beautiful baby lived. You cannot tell me that prayer does not work. I *know* that prayer works. I have seen it. That is only one time out of many. When God tells you to pray, friends, you'd better do it!
Now, it would be narcissistic of me to think that God will answer all of my prayers in the affirmative. We know that the earth has been given over to the will of man. People are governed by what they want to do. Evil abounds by our hands and by our choices. Additionally, God has His own reasons for answering prayers in His own way. There are too many reasons for the outcomes of our myriad of situations to know exactly why any given thing happens. I will not always get the answer I want. I *can* be okay with that. :)
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My dad asks that the Lord be given the glory, no matter how God chooses to handle his life. That is one more way he has been consistent since I was a child. I can hear him praying over the pulpit of that first small church he pastored, "May everything we do be for Your glory."
This season of my dad's life is painful. It doesn't have to be ugly, though. It doesn't have to be depressing or despairing. Dad knows that his life is in God's hands. He trusts that whatever God decides is for his own glory. My dad may be in his recliner, it is true. He is not to be counted out, though. Even from his chair, my dad is serving the Lord and bearing witness of His goodness. 
May my prayers from now on be filled with confidence that God hears and cares. May my deepest wishes float to God's ears and be responded to in His infinite wisdom. May I never forget to thank Him that - even in this hard time - my dad can still be used. His life bears witness daily of the grace and mercy of God. I find that I truly *am* thankful for our present situation. I am thankful that this trial can be used to teach me even more about God's love and tender mercies. 
God *is* good. I so thank and praise Him for allowing me the dad that I have. I love that preacher man more than words. I am so truly and deeply blessed. <3 <3 <3

We have started a GoFundMe Campaign on behalf of my parents. Please consider sharing it on social media.