On Friday Henryk turned three weeks old!

Our last post shared that we came home with Henryk on hospice care. We have been home now with Henryk for 6 days. Amazingly enough, Henryk has not vomited once since leaving the hospital. We stopped monitoring his feedings in detail and are just feeding on demand. He has even transitioned to nursing exclusively with no bottles. This is quite something and we are very happy about it.

We had an appointment with our pediatrician this week to get more of an idea of what the future could look like. Now that the vomiting has stopped, things could go a few different ways. It is impossible to tell, but he said that he believes we may have a number of months with Henryk. He does not believe Henryk’s brain will hold up for more than a year, but he does not believe it will fall apart in a week either. Although Henryk is at risk for a spontaneous life-ending event, we will more likely be faced with gradual changes in his condition including eating, breathing, and general failure to thrive. It is also likely that Henryk’s head will continue to grow, even becoming quite large.

So we move forward with tension. Oh lord, how do we do this? How do we live this way? We are caught. Live like you were dying… How do you live like your child is dying? It feels like a very significant and at the same time like a very silly phrase. Life has never felt so deep and real. It has also never felt so fuzzy and unbelievable. How do we try not to waste any moment when every moment is saturated with sadness? How do we do trivial things like go to the grocery store and act normally when our baby’s brain is degenerating? How do we spend time with the people who will help us most when we can’t form words? How do we have a conversation about the weather when the sky is falling?

How did our hearts not stop when our sons brain started falling apart? The very act of continuing to breath is an effort so colossal it produces continual exhaustion. We feel as though life is ruined. But even if that were true, a ruined life does not equal a life without purpose. A life intended by God.

Every moment of every day will be altered. Would that we could die in his place and end this. Such is this love in our hearts for him. But that is not our option. But that is what Jesus did on the cross for all of us. That is the kind of love he had for us. And indeed he still does, although we do not understand our situation. Jesus died on the cross so that we have hope. A greater hope, a greater love, a greater strength, a greater comfort than a perfect brain. In this world we will have trouble, but take heart, he has overcome the world.

Our Henryk is a sweet wonder of the Lord and we are overwhelmed with thanks when we hold him in our arms.

~Emily~

Psalm 77: 11-15. I will remember the deeds of the LORD; yes, I will remember your wonders of old. I will ponder all your work, and meditate on your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples. You with your arm redeemed your people, the children of Jacob and Joseph.

Lily entertaining Henryk with “Bodo Head”

Lily and Henryk with “Unc”

Lily reading to Henryk

Henryk enjoying the beautiful weather this past week

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