What’s so Merry About it?

December 22 Update:

We’re grateful that you continue to pray for us on this journey. Our trip to Disney World was everything we wanted it to be for our family. There were a few bumps along the way, but they were manageable, and we made lots of memories. Join us in thanking God for the provision of being able to make that trip. Quality time and memory-making continue to be high priorities around here. Pray that Christmas would be a joyful time for us.

The symptoms of disease progression are apparent. Asher is beginning to lose the use of his last good limb, his right arm. He’s all but lost his ability to speak anything but one-syllable words, and he can no longer eat solid foods. He’s taking it a little harder than usual, not just because he knows what it means long-term, but because he’s losing more independence. Asher doesn’t get frustrated often, but when he does, it’s almost always about communication. As the number of ways that we can communicate continues to drop, pray that we can maintain some means of making sure that he’s heard. Pray that we would all have patience with each other. Pray that Leah and I can manage all of his symptoms well. Pray that we can be creative in finding ways for him to enjoy his days. Pray that we can all get consistent sleep.

Continue to pray for his heart. Pray for wisdom and discernment for Leah and I as we try our best to care for him on the inside as much as the outside. Pray that his hope in Christ will grow when things seem like they’re getting darker. Help us to just be present when we need to be present, and when we need to speak, to speak truths that instill hope and comfort in the joy set before him.

Finally pray for the families whose children have left this world in the last few weeks due to this disease—Mustafa Kareem, Angel Patterson, and Dominic Vecchio. These are families who have been on the same journey as us this year, and they are close to our hearts.

Merry Christmas

I confess that ending by wishing everyone a merry Christmas was a little tongue-in-cheek. It’s not that I wanted to suck all of the joy out of the room. I wanted readers to sit for a moment in the thought that, in three days, the families of the children whose names I had just cited were about to experience their first Christmas without one of their children. For them, in the place of the joy of the season, was grief and anguish. For them, Christmas would never be the same. And my family was barely sliding under the wire.