Tralalero Tralala

Bear with me for a short story. Recently, CJ had an allergy appointment in Sioux Falls, so we decided to turn it into a family “minication.” The day before the appointment, we visited the mall. Gage wandered with Desirae and his grandmother, who joined us on the trip. I grabbed a coffee and waited at the food court. Gage came over, excited to show me something in the toy store nearby—a ride-on motorcycle. We took a photo and moved on; I didn’t think much of it. The next day, after leaving the trampoline park, Gage insisted on something he called “Tra-la-layo-tra-la-la.” It became a family game trying to decipher his meaning, as Gage’s speech can be difficult to understand (which is why he is in speech therapy). His brother finally guessed it: a shark with blue shoes. Suddenly, it clicked—the toy store had a stuffed shark with blue shoes, which Gage wanted. We returned to the mall, and, after a search, found the last one. Gage was thrilled. Later, we discovered a YouTube video about a shark named Tralalero Tralala—exactly what Gage had been saying. We just needed context to understand him.

We don’t always figure out what Gage is trying to tell us; we probably understand about 20-25% of his words. He’s improving, practicing his “speech therapy” because he knows it helps. Is Gage’s speech related to his ECD? We hope not; one of his brothers was a late bloomer with speech, too. Nothing in his scans suggests a problem, but doctors often say, “We just don’t know” because Gage's cancer is so rare. We aren’t worried yet; we believe his speech will improve, and for now, we enjoy the cute little stories.

I’ve wanted to write this story for six weeks, mainly because the Tralalero Tralala experience had a point. When Gage was trying to communicate, I thought we’d never understand him. Often, we can’t, but he was rarely so persistent. Missing the shark with blue shoes wouldn’t have been a disaster, but we wanted to solve it for Gage’s sake. At our last doctor visit, we learned they didn’t know why Gage’s MRI showed growth around his eyes despite initial good results on medication. It’s tough, because we want answers from the experts—but sometimes, there simply aren’t any, and I appreciate their honesty, even though it’s hard to hear those words: We just don’t know. There are many things we do not know, and it is easy to focus on that list; in fact, that is our nature — at least it is mine. We have been going to Mayo every three months, and I realized recently that about a month before each visit, things happen. Is it anxiety? Depression? I am not so interested in the label, but I think the answer is yes. Physically, for instance, it becomes more difficult to get out of bed, not so much because I am so tired, but because the first thing I think about when I wake up is the things for which I have no answer, and I don’t want to think about those things. I should get up, read Scripture, and immerse myself in what God has to say about the matter, but my body tells me the easiest solution is to sleep. So what do I do? I drag myself out of bed and, instead of trying not to think about all the “I don’t knows,” I make a mental note of one of them—the one that seems pressing in the moment. I then open my Bible, head straight to the Psalms, and start reading until... usually the tears stop.

Lately, Psalm 130 has been particularly meaningful:

“Out of the depths I cry to you, O Lord!
O Lord, hear my voice!
Let your ears be attentive
to the voice of my pleas for mercy!

If you, O Lord, should mark iniquities,
O Lord, who could stand?
But with you there is forgiveness,
that you may be feared.

I wait for the Lord, my soul waits,
and in his word I hope;
my soul waits for the Lord
more than watchmen for the morning,
more than watchmen for the morning.

O Israel, hope in the Lord!
For with the Lord there is steadfast love,
and with him is plentiful redemption.
And he will redeem Israel
from all his iniquities.”

One of the gifts we receive from the Psalms is the weightiness of personal struggle. Although we might not know exactly what is going on in the heart of the Psalmist, we do recognize that he is crying out to the Lord from the depths, which is something we can all identify with at times. We see the Psalmist’s plea for mercy as he asks the Lord to hear and be attentive to his situation, but as he reflects on the one he is addressing, things begin to change. Is the Lord, the one we are praying to, some sort of magic genie who is there to grant every request, fixing our trials and making us feel better in our present circumstances? No. The one we are praying to is the perfectly holy God of the universe. Who are we to come to the Lord and request that he listen to us — who are we to leverage such a demand on the Holy One? As the Psalmist points out, “If you, O Lord, should mark iniquities, O Lord, who could stand?” Not I. If the Lord counted against me all of the times in which I let the “I don’t know” issues of life cause me anxiety, the times in which I just lay in bed, not being able to sleep because of the worry I can do nothing about. I am a sinner. I fall short. Just when I start thinking that I am okay, I realize that in about 30 days we will be heading back to Mayo Clinic, and there are so many things I do not know — so I fret.

The Psalmist does not leave things there, but reminds us that with the Lord, there is forgiveness. God is truly Holy and truly forgiving. It is a balm for the soul to know that my iniquity was laid upon Christ Jesus and He bore the weight of punishment for my sin on the cross of Calvary. That through faith in Jesus, His perfect righteousness is imputed to me so that when the Lord looks at me, He doesn’t see my own continued failures, but His beloved child whose heart hurts and needs the peace and comfort that only His loving Father can provide in the midst of uncertainty. It is at this point that we are reminded, as the Psalmist is, that there is hope. And it is in that precious hope we wait.

“Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world. And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.” ~1 Peter 5:6-10