It has been over four weeks since Henryk’s condition changed. Sometimes, when it is just us at home, we can almost see a glimpse of normal. Like maybe this isn’t actually happening. Maybe we will just go on like this for the rest of our lives. We just had to adjust a little and find a new normal and now that we have done so our lives will be like this. But mostly that’s because we are holding him.

As long as I am holding him, I only see his little face and hear his breath on my neck and feel the soft skin of his cheeks. But when Michael is holding him and I leave the room and come back in, I see the reality of the situation, the whole picture, and remember the daily log of his eating and medicine that I keep that says he ate an ounce today and wanted less than that yesterday. I remember that only a few nights ago he only breathed once every three minutes for over two hours. That brings on other times.

There are other times when we feel like we are sliding down the edge of a gravelly cliff. And even though we know we are falling, and there is nothing we can do about it, we keep scraping and clawing at the rock with our hands and feet. Or like losing weight. Our bodies are programmed to eat the number of calories that will maintain our weight. That is why we get so hungry when we try to lose weight – it is against our natural instincts. What is happening is against every fiber of our beings. But there is nothing to do but love him and let what will be happen.

I went out to Target today. After circling the full pre-Christmas parking lot, finding a spot, and making my way in to the store, I found myself unable to concentrate on what I was doing. This has happened many times since we found that about Henryk in April. Once I went to the grocery store for a full week’s grocery run and came home with only two boxes of Kix and some frozen potatoes. And tonight was worse since I hadn’t left the house since Tuesday. Even with the hustle and bustle, I felt myself yearning to explain myself to every person I came across. The need to stop them and tell them that no, who they see isn’t actually who I am. This isn’t the full story. Half of me is at home laying on the couch with Daddy.

I had horrible nightmares all night long last night. However even in the dark of a scary night, God is with me. We will never, at least in this life, know why this is happening. Although it would make it easier to know why, we simply will not. Luckily there is comfort beyond an explanation. There is comfort in knowing that God loved us so much that he sent his son so that our names are written in heaven. Jesus came and suffered perfectly so that we might survive our suffering. He endured terrible circumstances so that our lives do not depend on ours. Jesus’ death and resurrection so that God looks on us and sees his perfection rather than our sin produces a life beyond even the most horrible circumstances. And in this we will rejoice.