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 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
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,
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.
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 |
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 |
_________________________________
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.
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