Before You Sleep

Before you sleep,
Hold my hands
Just one more time.

Before you sleep,
Say, "I love you"
With your eyes locked on mine.

Before you sleep,
Promise to me that
We will all be okay.

Before you sleep,
Let's say all of the words
We won't get forever to say.

Before you sleep,
Hold me once more
In your cherished arms.

Before you sleep,
Protect my heart
From this impending harm.

Before you sleep,
Sing once more time,
Just for me.

Before you sleep,
Let us laugh together
And pretend we are carefree.

Before you sleep,
Let's go to Schwan's pond
Just one more time, fishing.

Before you sleep,
Let's do every single thing
That we are wishing.

Before you sleep,
Read again to me
From your worn-out Bible.

Before you sleep,
Preach just one last
Great week-long revival.

Before you sleep,
Let's no longer
Be this soul-weary.

Before you sleep,
May every single day
Hold something cheery.

Before you sleep,
Watch my babies
grow big and tall.

Before you sleep,
Let's pretend that
This isn't real at all.

Before you sleep,
If only my words
Would just keep you living.

Before you sleep,
I'd never, ever stop
My words giving.

Before you sleep,
I don't want your
Life to ever end.

Before you sleep, 

Know that you have
Always been my friend.

Before you sleep,
How deeply we think
The very best things of you.

Before you sleep.
You have been patient,
Kind, gentle, and true.

Before you sleep,
My precious, beloved,
Very own Superman daddy.

Know that you are loved
And will be missed
Oh, so badly.  :'(

Know this...

Before you sleep.

(We have started a Go Fund Me on my dad's behalf. Please consider sharing it.)

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.

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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.

Joy in the Morning

"Hear my song, Lord; You fill me with music.

Hear my words, Lord; You fill me with praise.

Take this moment; I just can't waste it.

This one is yours, Lord; I give you this day."

~ Song Lyrics by Gloria Gaither

This song touches me on a soul level, every time I hear it. Not only is it rhythmic and soothing, but also the words ring so very true. My life right now is one giant juxtaposition of beauty and pain. I cannot help but think of the Psalmist on days like these. 

"...weeping may endure for a night, but joy cometh in the morning."Psalm 30:5b

Last night was a night of prayer. I did not weep literally, for a change, but my heart was sore. My dad was having trouble breathing, even with his new mask. He was very weak and could only take a couple of bites of his dinner. (purees) My mom sent us a pic of him looking very pale, tucked into his recliner, wearing his mask, trying to breathe. For any child, the sight of their father struggling is hard. We were understandably shaken up. Something about this felt worse.

Unfortunately, nights like that cause me to remember that this is one more in a vast series of scares we are going to have. It also caused me to wonder if he would be passing on that very night. I don't usually have that instinct but something seemed different. This was more unsettling than some of his other rough nights. I tucked my children's coats and shoes on a chair where they could be grabbed in the middle of the night if needed.

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Then we have the other half of this beauty and pain juxtaposition. I quickly posted to our friends and family for prayer on my dad's behalf. I do not do this to seek attention or to appear dramatic. No, if you've been around ALS, you know that this could not be the case. 

I ask for prayer because I have seen it work. Indeed, I have even felt it work in my own body. I also do this because my dad is well-loved by many people. Those who love him are mostly persons of faith. This is simply what we *do* in times of trial. We pray for one another. It is a way to send love and support when we cannot be there or do something physically to help.

It is comforting to see how prayer begins to go up. I am reminded of the verse which says, "Where two or three are gathered together in my name, there am I in the midst of them." (Matthew 18:20) So many of the names that offer prayers are people I know pray together with spouses or as a family. Each person adds to our list of 'two or three'. On the whole, there is nothing but love swirling towards him. I am deeply moved because I know the power behind this much energy. 

Every time we have done this, my dad's rough night has improved. Every. Single. Time. Not too long after they prayers begin rolling, my mom sent us another picture. Mind you, I had not said a word to them about having people pray on their behalf. They went from my mom keeping an eye on him (watchful, ready to call the squad), to my dad sitting up and asking for a cup of coffee. If you saw the stark difference between the two pictures, you would also see God. It blew my mind, yet again.

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This brings me to the 'joy comes in the morning' part. :) With that much prayer and that much support, it is impossible to remain in a negative space. Where there should be fear, there is praise instead! My God, the great Physician, has my dad in His hands! Whether it goes well or goes badly, there is safety in knowing that he is simply held. 

We are waiting this morning to hear how the rest of my dad's night went. As with every morning, I am eager to hear from my parents. I will wait (somewhat impatiently) until they make contact with us. If they are asleep, I do not want to wake them. If they have begun their day, I do not want to interrupt them. This morning, I have a light heart. I am singing inside and will sing aloud when my Giraffe wakes up.

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The morning will come when I wake with my dad no longer on this earth. Mornings like this give me the strength to believe that I will be able to face that morning, too. I sincerely believe that when he passes on, there will be no more pain for my dad. There will be complete healing of a different kind. It won't be easy but it will be cause for rejoicing. How could we not celebrate the end of suffering? My dad is a beautiful soul. He is kind, loving, and gentle in his own way. Every day that he wakes to another day of suffering is a day that will make the morning he rests eternally a beautiful morning. 

All I ask of *this* morning is that it is better than last night. I ask that he breathes more easily. I ask that he feel loved and that he gets some rest. The Lord provides "strength for the day and bright hope for tomorrow", indeed.

"Great is Thy faithfulness!

Great is Thy faithfulness!

Morning by morning new mercies I see. 

All I have needed Thy hand hath provided,

Great is Thy faithfulness, Lord, unto me!"

Pardon for sin and a peace that endureth 
Thine own dear presence to cheer and to guide,
Strength for today and bright hope for tomorrow, 
Blessings all mine, with ten thousand beside! 

~Song Lyrics by Chris Rice

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

I Need Springtime

I need spring to arrive. 

Just that. 

I'm falling apart and I need to nurture life. 

I need spring.


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

The Most Beautiful Valentine

Yesterday, I had the privilege of accidentally happening upon my parents' Valentine's Day. It was the most beautiful thing I have witnessed in recent memory. ~ <3 ~

First of all, my mom's neighbor took her out for dinner at the Mexican restaurant that is actually right behind their living community. She told my mom that she needs out of the house (which is so true). There are several widowed women on the street who know nearly (if not exactly) what my parents are going through right now. I am so grateful to this precious woman for that beautiful gesture. It was great that my mom got to have a short period of time to just 'be'. 

When my mom is out to run errands, my sisters and I take turns calling my dad. They have an emergency plan set in place, of course, but it is a comfort to us to hear his voice and to know that he is doing alright. 

I took my turn and spoke with my dad. Later, I took an additional turn to call, just in case my mom wasn't home yet. She was home and answered the phone. :) We chatted for a while. She told me about lunch with her kindly neighbor/friend. I talked to her about the girls and something silly I had read online. In the background, I suddenly heard my dad speak. 

Dad: "There it is!"

Mom: "What? Did you get me something?"

Dad: "Happy Valentine's Day, Babe."

AWWWWWWWWWWWW!!! It was pretty evident that a knock had come to the door. I said goodbye and hung up the phone as quickly as possible so they could have their privacy. :)

Around half an hour later, it was killing me! lol What had come to the door?!?!? I had to know! haha I hoped that I wasn't intruding and called them back. My mom answered the phone again, her hands in the sink with the roses she was cutting to put in a vase. I was so delighted for her!

She told me that his card to her read that each petal of every rose contained a kiss from him. One fell, and she sounded genuinely sad when she said, "Oh no! There goes another petal!" She confirmed this, telling me that five sweet petals had fallen off and about broken her heart. She doesn't want to lose *any* of my dad's kisses. That was so touching it broke my own heart a little bit. :( 

I asked her if she would take a picture of her flowers and candy. I also wondered if her neighbor might pop over again to take a picture of her and dad together for Valentine's Day. The truth is, my sisters and I are hyper-aware that it may be their last Valentine's Day together. We want to have pictures of everything these days, you know?

Mom didn't think she was dressed well enough for a photo together. I suggested taking a selfie instead, pointing out that it could just be their faces. That is a funny idea because my parents have never taken a selfie! What followed next made my entire day! haha

My mom left the phone on speaker, setting it down so she could try to figure out how to take a selfie with my dad. I could hear them laughing and trying to get situated! She has to sit very carefully near him, of course. Balancing that with trying to learn how to hold the phone out carefully and take a photo was a whole new experience!

Oh, she giggled like a schoolgirl! My heart became lighter and more joyful with every single giggle! The laughter was punctuated by the happy chirping of my tablet: notifications of pictures received from them. Each picture widened my smile and added to my own joy! I was grinning like an idiot in no time! haha

The phone call wasn't terribly long but it was so sweet. I hopped off once I had received the pictures and they had given up on getting the perfect shot. To me, every single one was absolute perfection! I left my parents to their laughter, roses, and Mint Meltaways from Fannie May. 

Hubs and I celebrated our Valentine's Day last weekend. Yesterday was 'just another day', for what it was worth. That said, thanks to these two peeks into my parents' home, I got to witness what I would have to describe what was the *most* beautiful Valentine! <3 <3 <3 

Some couples don't get to make it to 'til death do us part'. My parents do. It is tragic, in some ways. However, it is also intensely rich, powerful, and beautiful. Love like theirs, which has been tried in the fires of life repeatedly (and which has survived and thrived), is something special, indeed.

Thank you, Mom and Dad, for being this beautiful testimony of love that doesn't quit. Thank you for exemplifying the principle that love works - very hard sometimes - to keep going. Thank you for proving that 'til death do us part' is still more than "just words" on "just a paper". Your love and commitment have been inspiring. Your dedication has been witnessed. Your love story will not go untold. <3 

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. 

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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.

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.

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.

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. 

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.

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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

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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!

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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.  

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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...   

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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.

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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.

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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.

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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.

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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.

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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. 

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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.

Groundhog Day

Six more weeks of winter, folks. 

Isn't it garden time yet? I need my garden. 

I. Need. My. Garden.

The Big Question

Yesterday, I asked our ALS Association rep the question that has been scaring me to pieces off and on this whole time. 

"How is my dad going to die?"

I knew the semantics, mind you. I have been reading over sites about ALS and containing ALS information ever since we learned that he had an MND that was suspected to be ALS.

I know, for instance, that the nerve death happening in his body means that his functions are shutting down, one by one, because messages can no longer pass from his brain to his muscles. We see this affecting his tongue, facial muscles, limbs, etc. This changes how he swallows and speaks, how he moves. This is robbing him of the ability to walk upright. It will rob him the ability to walk at all. Nerve death is stealing his ability to get up and down. It means that he cannot catch himself when he falls. It means a lot of things.

The same nerve death that causes his brain to send signals, which are no longer being received, is happening in his lungs. He struggles to breath when it is rainy or if the humidity is even slightly up. So yes, I know *how* he will die. He will suffocate to death when his nerves can no longer tell his lungs to breathe. :'( :'( :'( 

What I was asking *Joanne is how this will fee. Will he be gasping for air? Will he be writhing or flailing around, keenly aware of taking his dying breaths? Will it be torturous and scary for him? :'( :'( :'( 

Thankfully, she understood exactly what I was asking.

I try to be very professional when I am on the phone but this question made me burst into tears. I was trying to hold them in. She, being so loving and caring, immediately took an even more compassionate tone. She explained to me that ALS patients have very peaceful deaths. When my dad is put on Hospice, they will keep very good care of him. The time will come when it is very clear that he is losing his battle. When that happens, they will make sure that he is medicated for comfort and that he is sleeping.

I know on our end it will be more complicated than that. My mother, at the very least, will still have to witness it happening. :'( :'( :'( On his part, though, my dad should slip off into eternity from a state of calm, in his slumber. This is everything that he has ever prayed for. I thank my God mightily for this!!

We don't know how long he has. Some days, it feels like he may not last the month. Other days, I can be more optimistic about everything. God is still on His throne, after all. There are things doctors cannot explain. Miracles do still happen in the everyday. 

Today I continue to pray for healing. I pray for the Holy Spirit indwelling my dad to move through him and to cause healing/regeneration in the nerves and muscles throughout his body. I pray that mercy will be granted from Heaven. I pray that we will all be spared and that the Lord will be glorified. 

That is the big thing, of course. May God get the glory. In good times or bad, in pain or in pleasure, in joy or in sorrow... may the world know that God is good. <3

We have started a GoFundMe Campaign on my dad's behalf. Please consider sharing it on social media. *Name changed for privacy