Inevitable Decline
Caring Bridge - December 3, 2019
Asher has seen some symptoms of decline over the last couple of weeks. Most significantly, he’s lost most of his ability to speak. When he’s got the energy to make sound, it’s often muffled or slurred. Sometimes we can read his lips. Other times we use an app on his iPad where he can either press buttons that will say preset words for him, or he’ll slowly type something out which he finds to be very frustrating and onerous. As I’ve said before, this type of tumor has virtually no effect on his cognitive function. He thinks as fast as he ever has, but as time goes on, there are more parts of his body holding him back. Imagine someone chains your leg, and then your arm, and then your other leg, and so on, until finally, you’re just completely chained down, unable to move, and deprived of a number of critical senses like sight and hearing. That’s Asher’s physical journey.
The physical puts a strain on the mental and spiritual. He still gets depressed a lot. Asher is one of the most energetic children I’ve known, and kids express so much of themselves not in words, but in what they do. My boy who is so full of life seems like a caged lion now: created for so much more, but not capable of releasing more than a sliver of what’s inside. He’s very direct, if you ask the right questions. He wonders sometimes if God is hearing him. I remind him of psalmists who asked the same question. He has a hard time when we pray for healing in front of him. He believes God can heal, but fears disappointment. We seek to encourage him—to remind him of the joy that is before him—that whether God heals him instantly here, or if God takes him home, he will be set free from the bondage of his broken body.
Pray that God’s wisdom would be displayed in our lack of wisdom… and words. That He would give us true, gentle things to encourage and show love to our son. Pray that God would mend his broken heart. He has fresh losses to grieve. He could tell you all the places he wanted to visit around the world. As the realization sets in that the future he was planning might not come to pass, he grieves the loss of his dreams. Pray that God would speak to him in a way that he understands. Pray that he would be encouraged to pray more to our God who can hear each and every thought of his. Pray that the eyes of his heart would be opened to the greater reality that lies before him, so that his grief would dissolve in anticipation of being made whole in the presence of the King of kings.
Pray that God would flood our hearts with faith. We need immeasurable amounts of it to get through each day.
Good news…The holidays are usually crazy for us, regardless of circumstance. For obvious reasons, we’re seeking to make the holidays of 2019 anything but ordinary. We spent the weekend in the mountains with family, and next week we’re off to Disney World! We had planned on taking the kids after Christmas, but as things stand, sooner is better than later. Pray that we would succeed in making happy, life-long memories.
Pray for me (David) as I wrap up work on the hard things. Because of the close call we had in the spring, I was able to get a lot of end-of-life preparations out of the way. But there are still a handful of heart-wrenching things to finish. Pray that I honor both our God and our Son in preparation. Pray that Leah would have the strength to endure these days with joy as well as the harder days ahead.
I’m grateful for each of you that continues to pray for us.