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

Monday, January 30, 2017

The Good With the Bad

I realize that my posts of late have been themed a lot toward my dad and what he and my family are going through on our new journey into life with ALS. I cannot help that, so much. It is constantly on my mind. I know that they can also be a little bit dark. There are those scary thoughts and emotions tumbling through. I thought today could use a little bit of sunshine, as it were. :) Here is a (maybe short) list of some of the good that has come along with the bad.

1. Love. 
    We have a chance to tell our dad/husband/uncle/brother/son/friend how dearly he is loved in this world. He gets to know that he matters. He gets to know *why* he matters and what a difference he makes in our lives. We get to tell him how much we love him.

2. Goodbye
    We get to tell him goodbye. This is a privilege not everyone gets. By the time his soul leaves his body, we will have told him goodbye in a thousand ways. Sure, we aren't always saying the word. However, I believe in some way that every time we talk to him - no matter how normal the conversation - we are also saying a little piece of our goodbye. 

3. Family
    This kind of experience hits all of us in different ways at different moments. There are stressors like crazy. Through all of it, there is the drawing closer of our already-tightly-knit family. My sisters and mother, who I already love and would kill for, mean the world more to me now than before. I am clamping my heart tightly around each. We are hanging onto one another for dear life.

4. Faith
    I resist the idea that faith is personified in being okay and looking okay. I resist the idea that a person's testimony is at risk if they show how vulnerable and aching they are inside. To the contrary, verses through the Bible remind us that He is our strength during our weakness. We are reminded to lean on one another, to bear one another's burden. I do not trust people who put a high value on looking put-together even among their closest friends. These are not honest people. I hurt for them, closing themselves off from comfort. My faith is a rock, an anchor, a grounding point in a rough time. When I am not calm, my father is with me. This experience challenges and cements that faith in ways other points in my life have not. 

5. Friends
    Grief is awkward. It is awkward during and after any traumatic event. Grief will bring friends closer or drive them away. People contact you to tell you that you are loved or thought of. They come out of nowhere to support you. Going through this experience feels very isolating sometimes, it is true, but it also reminds us that we are not truly alone. There are people out there who care.

6. Prayer
    As if life itself wasn't hard enough to keep a person on their knees, along comes ALS. There is no specific way to pray. Sometimes you can only say a word ("Help!). Other times, my heart comes tumbling out in a million words and thoughts. Prayer is good for the soul. Prayer comforts. Prayer calms. Prayer breathes when the soul is suffocating. 

7. Children
    My babies have been precious beyond words from the years I lived before they ever came along. They are infinitely more precious to me now. I am determined to begin to take care of myself for their sakes. 

8. Health
    Number seven brought me to this one. This experience is teaching me that we don't always end up with expected illnesses. How careless I have been to allow my body to become so unhealthy. It truly does affect them. Pray me some strength on that one, because this is a struggle I've had now for years. 

9. Memories
    Living with such a harsh reality makes the memories we have already made with my dad, my parents, and my family as a whole so much sweeter. It makes each new memory that much more invaluable and coveted.

10. Time
      You've heard all of the cliches about time before. You already know that it is precious. Time right now is at a premium and we are all so very aware of it. It is a highly-valued currency more precious than gold. May we spend it wisely.

Anyway, that is all I have right this minute. I know there are more, but I really do have to run. This experience is painful on so many levels. Admitting that doesn't mean that I don't see the good. Hurting doesn't indicate a lack of trust or faith. Admitting to the things I fear does not mean that I am not also begging God for His mercy and seeing it where it shows itself. 

We (my family) are leaning heavily on the Lord, each other, friends, and family to get through this thing. It is tragic and beautiful. May we ever draw closer to one another and to God. May He be merciful to us all. May you, reader, see this and understand that we have not given up. <3 

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