A Balancing Act of Words

I sometimes feel as though my family and I are in an impossible position. We are caught in this perpetual balancing act of watching how we speak about my dad. It is important for us to be positive but also truthful.

For instance, Dad was better last Saturday than I had seen him in two weeks. Granted, my last two visits were spent at what we feared was his death-bed. Still... he was doing much better and I loudly proclaimed that! :) I stand by it! :) 

He is also an absolute giant of faith. His personality, character, faith in God, and overall demeanor have been uplifting to me personally during a time when I desperately needed that boost. He seems to be living, rather than dying. That had me on *such* a high!

This morning, my dad scared the daylight out of all of us. Truly. He had an issue that would seem absolutely minor to anyone who is not sick. To a person with ALS, however, it has deeper implications. My mom called in a nurse, who helped them get through it. She also adjusted their plans moving forward. All of this is wonderful and helpful. I am praising the Lord that my dad is doing very well now, compared to what he was doing this morning! :) His vitals all look good!

Now for the serious talk. He is not *better* or *well*. He is still a very sick man who is still living with Rapid Decline ALS. In fact, in spite of how well he has looked and seemed to be (especially in spirit), he is still shrinking. He is smaller every day than what he was before. Much of his body would bring to mind photos you have no doubt seen of survivors of the Holocaust. I do not say that lightly. He has never gone through that. I simply mean that he is that thin. The leftover skin around his stomach creates an illusion that his limbs betray. 

My dad had also regained an appetite which he did not have before. That is *so* encouraging and exciting! This is where we run into that pesky wording again, though. We sincerely praise the Lord that he has an appetite and people might picture a meal. That isn't his reality. The truth is that he allowed me to feed him four small 'bites' of baby food on a spoon. There was one day where he took in most of a small, very pureed smoothie, having worked the entire day to do so. The rest of the days, his 'meals' are less than your average six-month-old might eat.

Do you get the idea? 

There are blessings which feel huge to us (his family) but which are, more practically, very minuscule when compared to his overall reality. 

SO, we invite you to continue to rejoice with us when we are rejoicing! :) That said, please do not stop praying with us. Please do not think that we use the word 'better' in the same way you might. ALS/Lou Gherig's is withering at the soul-level. Our ups and downs feel massive, even when they are minute. Every bit of prayer is necessary. Every bit of positivity is necessary.

Today, we invited you to join us in prayer. God intervened, and things look better... even though they still look worse overall. That was a beautiful and blessed thing, no matter how you look at it. We sincerely *are* relieved!

If it seems that we are keeping you on a roller coaster, please forgive us. We are on that roller coaster too. 


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

He's Still My Hero

This past weekend, I got to visit my parents again. This was my first visit with them since my dad came home from the hospital on Hospice care. To be honest, I have been so wrapped up in trying to preplan for 'that time', that I had not taken the time to step outside of my 'impending death' fraught life. The sudden loss of our beloved patriarch on the other side of our family compounded that. Everything felt whelmed with the waves of death. :'(

People would talk about praying in faith for healing and I heartily agreed. I also heartily disagreed. It is sometimes harder to talk about praying for healing when all signs point to the grave. We have to grieve a bit before we can wrap our minds around our own smallness in this vast universe.

My dad is very determined that we are to pray for his healing. I really wanted to be fully committed to that, too... but how?

It turns out that our visit was exactly what we needed! For one, this time around he wasn't near death in the way that he was the last two times I saw him. This man was my dad!! :) He was my dad in a bed that was in his own home! :) Now, it *is* somewhat sad to see your dad in a hospital bed in his own home. I'll give you that. Still, this man was wide awake! His eyes were truly open! His voice has gone, but he can whisper! :) 

Oh, but he is such a beautiful man! Here is the face that I have cherished since I first opened my eyes in this world! Here are the deep brown eyes which have so carefully followed my life. Here are the big hands, which still love to hold my own. Here is the beautiful hoary head we love to kiss and nuzzle. Mom had lowered the bed rail so I was able to lean over and love on him a bit. Hubs and the girls took turns, too. :) 

This was *exactly* what my heart needed! Not only was I able to see my dad alive and as well as I'd seen him in two weeks; I was able to see the sheer, raw FAITH of a spiritual giant! :) 

If you have been reading these novels that I have dared to call blogs, you will know that my worst suffering has been over the crippling state of my dad. This man, however, was not suffering! He has been soaking himself in Scripture! He listens to it and watches it many hours a day. He is wholly meditating on the Word of God. He has been prayed with by so many people, on top of already spending much of his own time in prayer.

Friends, he looks SO peaceful! He speaks (well, whispers) SO much about his trust in the Lord! He looks to heaven and prays with clear expectations! :) His appetite has come back. It is small but it is there! His body tone seems to be improving in areas! He can whisper complete sentences, where he *was* down to a slurred word here and there. I am watching his faith rebuild him from the inside out!! 

Yes, he is still almost completely trapped inside his own body. That is always painful to see. It is heartbreaking, really. For some reason, though, his enormous faith and spirit overcome the physical obstacles and you can still see *him* very clearly, in spite of his body and circumstances. He is there! <3 <3  

There are not a whole lot of things I know for a certain in this world. This one thing I know for sure, though. My dad always has been and always will be a spiritual leader. I have so much to continue learning from him. He has not given up his faith, in any measure. He has not given up his fight! 

Things looked SO bleak before. We were all slowly grieving our way to the end of this hideous battle with ALS. It isn't that way now. Now we are trusting, praying, calling upon God to fulfill His promises. Now, we are *living* again! We are committing this man to LIFE in the name of Jesus! :) :) :) 

God Almighty has the final say in things. He knows how best to use my dad's life to His glory. He alone decides the number of my dad's days. Doctors do not decide this. GOD decides this. We trust Him implicitly to know that number. In the meantime, we are rejoicing through every day that we have this beautiful man to look up to. What a marvelous thing to know that he is resting and trusting, rather than suffering. What a glorious example of the peace which passes understanding! I continue to be floored by the giant who is my dad. <3 



We have started a GoFundMe Campaign on my parents' behalf. Please consider sharing it on social media. :) Thank you!

My Deep Grief, Clarified

Grief is a fickle thing, isn't it? Sometimes, it manifests in great, heaving sobs or wailing. Other times, it is a quiet ache that pervades through one's entire being. Grief comes out in physical aches and pains. It comes in bursts of anger which nobody sees coming. Grief interrupts the sweet memory of a loved one or the one moment of laughter you've had in ages. Grief is a cloud, a whisper, a burden, a shadow, a migraine, a cloak of darkness. Grief is that small wistful thought. It is the unspoken 'if only...' at the end of a sentence. 

My grief comes from a lot of places, as we walk through this painful journey. My dad is dying from ALS and yet, I can almost handle the fact that he will die.

Please do not misunderstand me, I do not want my precious dad to be removed from this earth. I wholly submit myself to whatever future the Lord brings on that front. I do not want my dad to be gone for one second of one day. It is just that there are worse things than death. Oh, but there are things which are much worse than death. 

This is ALS in a nutshell. 

I am grieving the upcoming loss of my beloved father. I am grieving over the pain that my mother is in. I am grieving privately over each sister, knowing full well that she is hurting. I am grieving for my babies and for my nephews and nieces, who have never been hit so hard or so closely with the loss of someone they love. 

I am grieving for our husbands, who are losing a father-in-love who has adored each one like his very own son. I am grieving that they must feel somewhat helpless to comfort us and can only really walk with us through this. I am grieving for all of these things and grieving for myself, as well.

I can handle all of this grief. I can handle every single bit of it. It is survivable because everyone who is hurting may close hearts with everyone else. We are a tightly-night family who will become that much more tightly knit through this experience.

My personal deepest level of grief is for what my dad is going through. Where I can find consolation for every other kind of pain, I have found this grief inconsolable. There is literally nothing that will assuage my Dad's condition but deliverance. It will take the form of a miracle or death. I can handle me hurting. I can handle my family hurting. I can just barely handle my mother hurting. I cannot, *cannot* handle my dad hurting this way! :'( It is this which leaves me shrieking inside my head from the depths of my soul. 

I have seen several diseases up close. This disease is by far the most relentless I have ever witnessed. It doesn't stop with immobilizing and emaciating its victim. It robs the very ability to communicate. How lonely my dad must be inside! How horrible not to be able to express a pain, a thought, a care... even something as basic as an itch! Death must feel like such grace by comparison! :'(

"I will not leave you comfortless: I will come to you."
John 14:18

This is where my dad's personal testimony continues to grow and thrive. He continues to find escape in the Word of God. He continues to draw comfort where he should be completely comfortless. His eyes are turned upward to the God of Abraham, Isaac, and Jacob. Faith is perhaps intangible and immeasurable but it *is* real. When there is literally no comfort left to be found in this life, faith sustains. 

I wish this disease would away to the depths of hell. I wish that sickness, suffering, and death were not hallmarks of life. Even so, I hope even more strongly that I can continue to grow in my faith. The Bible promises us strength and grace sufficient for the day. I can only imagine that my sweet dad is getting more strength and grace every single day. 

May I also find that Comforter holding open His arms when life itself leaves me comfortless. May I also push through the pain and continue to praise God. May His goodness continue to always be evident, even on the worst days.                                                                                                                                     

My sisters and I have set up a GoFundMe campaign on behalf of my parents. Please consider sharing the link to it on social media. 

Hospital

I have not been on the blog this week for good reason. Monday night, my dad was rushed by EMS to the hospital. He was having far more trouble breathing than normal. On top of that, he had continued his rapid decline into the worst weakness he has experienced yet. 

Today begins his fourth full day in the hospital. He cannot do much for himself. They've gotten him seated upright and standing briefly one time, so far.

It is hard to update, sometimes. 

It is hard to know that people really grasp what is going on here. 

His blood work levels are better. They are. 

He's not. 

He has an appetite sometimes. Other times, he can't eat. Eating messes with his ability to breathe.

There is no feeding tube in his future. There is no respirator. He is going home on hospice whenever the hospital releases him. My parent's living room will officially be a home hospital room. She and Hospice will take good care of him.

___________________________________

Today I hurt. 

Today I am sad.

Today, I cannot process thoughtful comments from kind friends.

Today I cannot accept that it will be okay. 

Today, all I can do is keep breathing.

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

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. 

_______________________________________

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

_______________________________

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.

_______________________________

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. 

________________________________

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.

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.

Visit With My Parents (incredibly long... you've been warned)

Yesterday, I got to visit with my parents. It was the first time I have seen them in a month. Due to seeing the pictures my sisters have taken, my dad looked much as I expected. There *were* still visible changes. His entire head looks smaller, for instance. He's lost over a dozen pounds. You can tell that immediately. He's smaller every time we see him. His bones protrude more as time goes on. His legs are thin and birdlike now, too, though still appropriate length to his frame. His broad shoulders are still broad but now they are also very thin. He swims in his clothing.

I put myself under a lot of pressure to go see him. I couldn't stand waiting so long when I miss him so terribly! I kept crying in random bursts that came more frequently the longer the space between visits became. I am trying not to be a fear-based person, I really am. The issues that I live with make that very hard to accomplish. (I am working on it!) These things added to my grief about our time apart.

___________________________________

My One and Only Dad <3 

My goal was to visit with him without crying. I just wanted to go in with energy and light and be a breath of fresh air. I wanted to soak him in like I do with my kids. You know how you inhale deeply on top of those precious heads? Oh, how I wanted to bask in the love of my dad!

I wanted to see my dad and help my mom, at the same time. My husband and children really stepped up and made both of things possible. I was able to do a little bit of laundry and cut my mom's hair while they dusted the house and Giraffe started dishes I finished not too long after. Koala had never dusted before, so that was extra cute!! She was *so* proud of herself! She kept asking Granna to look at her dusting! <3 <3 <3 

My Pretty Mama

I got time to sit and talk with my dad, too. We were very careful about not bringing in pet dander. As careful as we could be, at any rate. We put the clothes we were going to wear into the laundry here at home and did not remove them until we were dressing to leave. We made sure not to touch or sit down on anything in the house. We dressed and went out to the car. We also brought along lint rollers, taking a minute to roll ourselves all over before we went in. I kept rolling off and on the entire visit. Giraffe rolled lint from the couch and Hubs vacuumed before we left. We didn't want Mom to have to do these things. That pet hair is tricky stuff! lol

_________________________________

When we got in and removed our shoes, I wanted to hug Dad tight and never let go. It is hard for him to breathe, though, and I practically had him smothered in my sweater so I had to stop. It felt so good to get ahold of him!

He wasn't able to stand for my hug, which I did not expect. That was especially rough. I was planning on getting as close as I could to those massive bear hugs that I have had so often before. He gives the very best hugs! Even so, I gave him the best hug I could from my position bent over the recliner. I snuck in additional snuggles during the visit by leaning over the back of the recliner to get access to his head and shoulders. I let my fingers linger along the back of his neck and head, drawing in the feel and smell of my precious daddy's head. These sensations must last. I am going to need them!

________________________________

Goodness. These words seem so inadequate! I am trying to work up to how I felt... how I feel... about the visit. I just can't seem to get there. Every emotion was so intense. Every minute so inescapably valuable. I need to be able to express it properly but I cannot seem to do it justice. 

I am writing this blog as a permanent way to chronicle this experience. Should my dad pass to Glory, I know that I will want to have it to look back on. I want to remember every minute. This is important, and yet... how do I even describe any of it adequately? :'(

For starters, there are his hands. That was the biggest thing I kept thinking about through the day. I have held my dad's hands off and on for my entire life. They are huge. The younger I was, the larger his hands seemed. They were rough hands that liked to whittle wood, hunt (both traditionally and for ginseng), go fishing, work in a garden, and a hundred other 'manly' things. These are the hands that I grew up holding, that comforted and cared for me as a girl.

The hands I held yesterday are different. They are still huge but they are emaciated. You can see his bones - something that was never possible before. It was hard to get my fingers between his because they are stiff and locked into place. I worried that I was hurting him by interlocking fingers. The rest of the day when I held his hand, I was much more careful and gentle, no intertwining.

His hands are also no longer rough. They are very smooth, to the point of being softer than baby skin. They have the silky feel of someone in their nineties, not someone who is this young. His hands have always been gentle with us but they never specifically felt gentle. Now they do. I couldn't get over how soft and tender his hands are to the touch.  

_______________________________

We arrived in the late morning so we could be in and out early enough to give him time to rest. He was already exhausted when we arrived. He coughs that "I can't breathe" cough. He has us turn the thermostat from warm to cold to freezing to cold over and over, trying to breathe more easily. He spent the first part of the visit tucked into his blanket, laid back, trying to rest since he cannot sleep properly. 

He loved on all of us, taking time with each of my daughters, my husband, and myself. He knows that this time is precious. We all do. <3 <3 <3 

Giraffe especially took extra time to snuggle against his shoulder, holding his hand in hers. She is very aware of what is happening to him but she is very quiet about it. She is showing her support of me in quiet ways around the house. Usually very chatty, she slides silently up next to me and gives me a hug. This child, my beautiful miracle child, is gifting me her support via her presence. I could see that this is what she was doing with her Papa and Granna yesterday. Her love language is physical touch, like mine. She is putting herself physically into spaces filled with emotion. My heart swelled watching her. :') 

At one point, just before she put on her shoes and coat, he sat up in his recliner to give her a proper goodbye hug. He stopped her a moment after, held her hands in his, looked deeply into her eyes, and said slowly and deliberately,

"Always remember that you are Papa's pretty girl." 

That simple statement almost leveled me. You see, Papa has seventeen grandbabies. From the time they are born, he tells them upon every contact that they are Papa's boy or Papa's girl. Every single time he talks to them on the phone, he asks, "Are you Papa's girl?" or "Are you Papa's boy?" There has never been a time where that question wasn't met with an enthusiastic, "Yes, I AM!!" My soul, help me, God! This seemed like he was making good and sure that she knows how deeply she is loved, just in case...   

_____________________________

I resist the idea of taking photos. I do not like the thought that we are now taking our photos deliberately because we will someday want to reflect on every moment we possibly can. I am intensely uncomfortable associating these mementos with eventual death. The mere thought makes me want to intentionally avoid cameras, it so affects me. I want to keep every second held privately in my heart.

Even so, I knew that I would regret it if I did not take some pictures. We transformed special private moments to visible with Hubs' camera phone. I was immediately grateful we took them. :) The faces of my parents and children smiling back at me do my heart a world of good! I will continue to cherish and share these photos for years to come, I am sure.

_______________________________

I am going to step back in time a pinch to provide some context to what I am about to tell you next. 

My Koala is still so little. She noticed her big sister getting her Bible signed by Papa at Christmas. That same week, she had Daddy take her out to the Dollar Tree with her tiny purse and few dollars. We were proud to let her spend a little money. We assumed that she would hit the toy section as hard as a little one can. :)

You know, that little tyke walked into the store, found a wee Bible, paid for it herself and walked back out. :) Daddy offered to let her buy toys with her remaining dollars. Nothing doing, she was there for a Bible and that was it. :) From there, she spent the rest of the month bringing it to me periodically and telling me that her Papa needs to sign it for her. <3 <3 <3 

Yesterday, I was careful to remember to bring along her little Bible. Dad had to use a very large, heavy pen pressed between his thumb and the bone of his pointer finger. It is very difficult for him to hold a pen but he did so- painstakingly - just so my littlest little and I could have his signature.

You see, when we were young, my sisters and I thought it was fun to collect the signatures of preachers who passed through. My dad being our own pastor, the first signature was naturally his. He had some of the most beautiful handwriting you have ever seen from a man. He always placed his favorite verse - Jeremiah 33:3 - beneath it. "Call unto me, and I will answer thee, and show thee great and mighty things, which thou knowest not." Oh, how we are calling on Almighty God on behalf of my dad!!!

When I was a teen, someone I worked with asked to borrow my Bible. She was unfamiliar with religion and was curious to read it for herself. I sent it home with her that same day. She never came back. She quit work, effectively stealing my Bible. It wasn't until this past Thanksgiving when my little nieces and nephews were all getting their Bibles signed by Papa that I thought to look into my other Bible for his beloved signature. It wasn't there. :'( 

Nowadays, his signature is more precious and coveted than ever before. This is why it means so much to me that he took the time and considerable effort to sign my new Bible for me. His signature has definitely changed. However, his favorite verse is still there, as it always has been, and his love is stronger than ever before.

__________________________________

I did well through the visit. All too soon it was time to leave. Some part of me wishes that I could have stayed the day. However, dad doesn't just get 'tired' by receiving company. It can literally affect his ability to walk at all. :'( If that isn't incentive to keep it short, I do not know what is.

Before we left, I sat down to hold his hand one more time and try to somehow express my love for him. It was then that I had a bit of a panic attack and burst into tears. What if I never see him again?!?! What if this was the last time on this earth?!?!? I couldn't stand that! I couldn't handle for these to be the last moments, the last hug, the last time holding his hands! How unthinkable the future is when reflected upon in those terms. All I could manage was to sob and gasp out, "It isn't enough! It isn't enough!" :'(

Dad pressed the button which lowered the legs of his chair and placed him in a seated position. I went to my knees and scooped as much of him into my arms as I could get and wept over him. He held me as best he could. I tried to stop the tears and backed away so that I wouldn't crush him. Panic hit my heart again and I dropped again, slumped on the floor, weeping directly into his lap like a child. These moments hurt so much! This reality hurts too much!! I want my dad back, healthy, tall, and the strongest man alive!!! I don't want to leave! Please don't make me leave!! More, don't let *him* leave me!!!

My parents were so gracious about my outbursts. Like so often when I was little, they held me, comforted me, loved me, and talked me through it. I was able to take my seat and resume our conversation. Somewhere in there, Hubs got the girls into coats and shoes and out to the car. I stood, made my way to the door to retrieve my shoes and say a few more words before finally leaving, myself.

________________________________

I promised my dad to keep the faith. He wants us to pray for total healing or for a mercifully quick entrance to Heaven. He doesn't want the middle ground. He doesn't want to spend long days wasting away inside his own body. :'( 

It is hard to see him so set on having a full life or a quick death. He believes that he is a burden to my mother and there is no convincing him otherwise. :'( If he is, he is a burden borne with great love. Any of us would do this for any other. My family is not short on love and adoration.

___________________________________

During my time with him, I asked what we can do to make his life easier. What can we do to help tame the monster that is ALS? How can we make this journey he is on more bearable? His answer was indicative of his character:

"Help your mom. Help your mom get through this. Be there for her. Give her a break." :'( :'( :'( Wonderful man, my father. 

I promised, of course, and I will do my level best to keep that promise. My sweet and generous mother-in-love stands ready to watch my children so I can stay with my parents for a couple of days here and there. We are just waiting for the word.

_______________________________

Hubs, the girls, and I were all pooped yesterday after just our short visit and the drive time. I don't know how my parents are doing this. Their ability to push through, day after day, seems otherworldly. Life with ALS seems like the longest slow-motion accident ever. We are seeing the damage up close, frame-by-frame, as it happens. We are witnessing the life-altering damage it causes as spectators with no small amount of horror. 

We are witnessing something else, too. We are seeing a man, who has spent decades of his life preaching about God the Father, lean so heavily on that same God. We are watching my parents continue to pray without ceasing. We are witnessing my mother, who has been giving and faithful on a whole other level to so many people, continue to give until every fiber of her being is spent - and then keep right on giving. 
 We are watching their continued walk with and growth in the Lord. We are watching this man and woman live out every bit of what they have preached. My dad has worked hard to be a living example. I never doubted for a moment that we would see (although far too soon) him also be a dying example of faith in Jesus Christ. 

_______________________________

Friends, religion isn't about the building. It isn't about the rules. It is not about leaning one way politically. Religion is not about being better than we were - although, God knows that we do try. Religion is about trusting in Someone far greater than ourselves. It is about knowing that there is something that comes after and preparing for that. It is about a life which is a mere vapor compared to the eternity which our soul will spend beyond the mortal coil. 

A religion that has gone wrong looks like hatred for and strife with the world. Religion fulfilled is a life lived in awareness of and by God's grace. it is in being able to show kindness and love in the face of evil. It is in being able to stand when it is impossible to stand by one's own strength. It is in being able to face death with hope, grace, and dignity.

It is beautiful to see the people my parents have reached out to, touched in some way, or gone to bat for - for decades - reaching back toward them. It means the world to see people help us care for them when they are most in need. Religion fulfilled brings people closer together to bear one another's burdens. We are witnessing this in the lives of my parents.

Leaving my dad yesterday was probably the hardest thing I have ever done regarding him, to date. Trusting God to know what is best for him comes in a close second. I want to fix everything I can in life, especially the suffering of others. I simply cannot do that, in this case. I can only pray, hope, trust, and practice my faith. I simply have to give my dad over to God because there is nothing else to be done. 

Whatever the future holds, I know Who holds tomorrow. 

I know Who holds my dad. <3

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

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.

When Toil and Trouble Meeting

"Help me, Lord, when toil and trouble meeting,
E'er to take as from the Father's hand.
One by one, the days, the moments fleeting,

'Til I reach the Promised Land"

Walking through the "valley of the shadow of death" with someone you love tremendously is one of the hardest things we do in this life. As a person of faith, you work hard to believe that there could be a miracle waiting in the wings. As a human being, you are acutely aware of what the words 'fatal disease' mean. 

This song, "Day by Day" (by A.L. Skoog), speaks to the believer's heart like few others. In fact, it can minister to the soul better than a sermon on the right days. Today is one such day. These lines in particular tug at my heartstrings because it seems like so many of my prayers for my dad have flooded from my heart in paragraphs innumerable. Yet, when it comes to my lips, I have simply been reduced to, "God, help!"

I do still manage long prayers regularly. They are just disjointed and sloppy. It is like when I talk to my friends. When I am asked how we are doing, everything comes out in a jumble. My emotions, thoughts, fears, concerns, and efforts to piece these all together come bubbling out in a myriad of expressions that feels like the emotional aftermath of a trauma. The only thing is, we are not in the aftermath yet. We are in the present and the trials are at hand.

...when toil and trouble meeting...

We are in the midst of trouble. We are toiling to get through it. My dad is the one who has a terminal illness but it feels to all of us as though we are all dying. Grief is like that, I think. There is a living grief and a death grief. We are right now in the living grief.

This song reminds me to keep looking up. It reminds me that when I cannot feel strong enough to have hope or faith, I don't actually have to have those things. God has those things for me. He is the interceder. He is making prayers on my behalf when I cannot speak the words from my own lips. 

I think of my little koala. She is getting so big but is yet just a tiny person. I think of the way she longs to spend her day on my lap or in my arms. Every time her eyes meet mine, she smiles. She has that innocent trust that everything is better just because she has looked up and found me looking back. Oh, to always look at God like that! *tears*

That is how it is, you know, this valley of the shadow of death. We are constantly hanging onto one another, yes, but we are also constantly looking up. Is God still there? Yes. Does He still feel this? Yes. Does He see the pain? Yes. Is this situation truly in His hands? Yes!

The answer is a million times "YES!" because things this big cannot be taken from the hands of God. 

"One by one, the days, the moments fleeting,
'Til I reach the Promised Land."

We are walking a horrible road right now. All of the faith in the world cannot erase the fact that this is very painful. Holding onto one another helps. Looking to God and seeing that He is still looking back. The promise - that eternal promise that we will see one another again someday, no matter who goes first - helps. Time is short. Days, moments are precious. Time is a currency. Spend it where it matters.