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.
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.
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