The Worst Christmas

Just getting going on Christmas morning was difficult for Leah and I. We had fully prepared, but two things were hanging over our heads: 1) the inevitable “It’s his last Christmas,” and 2) the amount of deterioration that he had experienced over the last couple of weeks. Fine motor function came and went, but it was mostly gone by now. Would he have a little spark of something to at least help him enjoy the day?

In a word, No.

It was awful. Here was my boy who had been fighting a brain tumor for nearly an entire year, and his motor functions were so low, he couldn’t even play with his gifts on Christmas of all days. He was crushed, and so were we. To add insult to injury, one of his more special gifts even broke when I had taken it (and him) outside to try to help him play with it. It was just a random defect in the toy, but it felt like the universe was against us, and the sun was barely up.

The next stop was at my parents house for our usual gathering with family, and it didn’t make matters any better. Now not only could he not play with anything, he had to watch his cousins joyfully play with their stuff. He did get lots of attention, and he had the opportunity to just let out some of that frustration in weeping, but it wasn’t much of a balm on his mood, and that was entirely understandable.

I decided to take a small risk, not to lift his mood for the present, but to setup a contrast for the future. After he had calmed down a little, I scooped him up, and carried him outside to sit down on the steps of the front porch with him in my arms. He had lost nearly all of the weight gained from steroids, so I felt my own sense of contrast before I opened my mouth. First, I apologized to him for how things had been going, trying to affirm his feelings of disappointment, frustration, and sadness. And then I said, “There is a day coming for you soon, son, where every single day will be better than Christmas you ever had, and better than the best day you’ve ever had at all here, and it’s all because of Jesus.” There wasn’t anything else I could say or do but make an attempt at instilling hope in the heart of my son, who was feeling like all was lost. The despair was deep.

December 29 Update:

We are so grateful for all of you that are praying for Asher and for our family. We beg you to continue petitioning our Father on our behalf.

Asher’s symptoms are worsening. He cannot move, speak, and swallowing is very difficult. He is more tired and eating (puréed foods) and drinking much less.

Our Christmas was less than ideal. Asher’s decline meant that he couldn’t play with any of his Christmas gifts or family. It was devastating for him (and for us) and he has carried his sadness since.

He can answer “Yes” and “No” questions. Our system: blink once for “yes,” and twice for “no.”

A few mornings ago, Asher’s sadness was evident from the moment he woke up.

David: Are you sad, buddy?

Asher: One blink-yes

David: Are you sad about dying?

Asher: Two blinks-no

David: Are you sad about all that you’ve lost?

Asher: One blink-yes

There’s no scenario in which Asher won’t be healed. We are confident that God will answer that prayer—it’s just a matter of when and where.

Pray that we will not lose heart.

As the outer self of our dear boy is wasting away, pray that his inner self would be renewed.

Pray that Asher would be able to contemplate the reality of heaven in such a way that his present struggle would seem light and momentary in comparison.

Pray that we would look toward the things that are unseen, and hope.