Faithful Paradox

I recently read an article that essentially said that the human brain is capable of storing an unlimited amount of memories and experiences. The way the brain works, however, makes it so that we are unable to access all of these memories. In addition to the way things are remembered, when we experience a traumatic event, it is not simply a psychological event, but it becomes biological, meaning it affects the entire body and not just the mind. In life, this can look like times when our bodies remember events before our minds are cognizant of remembering.

I woke up Sunday morning with a deep heaviness on my heart. My body physically felt the weight of sorrow and sadness. This past weekend was extremely difficult for one of my boys as well; deep grief and sadness weighed on him. For our family, September is wrought with painful memories as we watched Ezra decline while cancer overtook his body. I had moments with my boys over the weekend and I asked them how it feels to be stepping into September again. They all responded with different thoughts or feelings, but the agreed upon answer was that they can feel in their bodies that something is weighty, even if their minds had not yet realized the memories this month holds.

As the grief would not lift on Sunday and I could not place my finger on the reason for the depth of sorrow I felt, I visited our Caring Bridge page to see if there was a particular memory associated with this day; something I was not remembering. The sorrow felt different, heavier and more acute than the normal grief that walks with me most days. As I read, I found myself thinking that it’s amazing how the body remembers what the mind cannot recall.

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September 7, 2022

Good evening –

Ezra caught a common cold (rhinovirus) and every bit of immune system he had (which wasn’t much) went to fight that cold. He had no immune system left to fight off the bacteria that is common on every person’s skin, so the bacteria evaded his system and got in his blood. Now Ezra has both a virus and bacteria in his blood with no immune system. His fever last night was terrifying (109.6). The doctors today said they have never seen one that high before (this mom would prefer Ezra hold the record for something other than highest fever). Ezra has been in awful pain all day long and is suffering terribly. They have a good cocktail of pain killers this afternoon to offer some relief (and at the very least, some sleep). We are grateful for this small reprieve for him.

The good news in this is that they believe they have figured out which bacteria Ezra has, so they are hopeful that after 24-48 hours, his symptoms will lighten significantly and his body will begin to respond more fully to treatment.

I was able to make it down to the hospital for a bit today to be with Ezra and Vince. I spent a lot of time sitting on Ezra’s bed, trying to be as near as possible, rubbing his head, just touching him gently. I read Psalms over him. I prayed with and for him. I cried. I can think of no more painful thing than watching your child suffer so terribly. I asked the Lord if he would be willing to impart even a small amount of Ezra’s pain on to me so I could carry it for him. I don’t think God typically works this way, but I asked nonetheless. 

I was reading through the Psalms and am reminded that God is close to those who are suffering. His Word promises it. So as Ezra cried out, “God, please help. Where are you?” I was able to say, “Thank you God that you are here. We know it. Show us your mercy.” It’s a helpful practice to speak what is true in the moments where we doubt it is.

I know many of you are wondering about the biopsy from yesterday. Ezra’s oncology doctors came in today right before I left with terribly disheartening news. Initial results of the biopsy show that he still has at least 80% leukemia cells in his bone marrow. The chemo did not work. We are heartbroken to hear this. It felt like one more blow on top of an already terrible day. So next steps now are to get Ezra in to one of the out of state trials for the inhibitor (which basically is just another type of chemo that will directly attack the particular gene mutation of his type of cancer). 

I came home from the hospital to pick up my boys from school and had to break the news to them. They are crushed. Their disappointment is huge. Tears are not difficult to find right now. One boy quickly pointed out that this means we will likely be apart for Christmas again. Yes, son, that is most likely true. Ugh.

I’m not sure how to even process all of this. I made each of the boys identify an emotion they are feeling. They ranged from confused to sad; angry to disappointed; and scared. We are feeling all of those things and more. We are confused about what the Lord is doing. We are sad that this is what Ezra is facing; what our family is facing. We are angry – angry that this is our reality and that we are watching our beloved brother and son suffer so deeply. We are disappointed for what this means for the next weeks and months for our family – more separation, more uncertainty, more suffering. We are scared. 

And yet, in all of this, we have no other place to go but to the Lord. I prayed today for Ezra’s oncology doctors. One seemed to accept the prayers I prayed as a kindness to me. One had tears in her eyes and asked if she could give me a hug and she hugged me hard for a long time. These doctors carry so much and have served us so faithfully. They are doing everything they know to do, and yet, there is a limit to their knowledge and ability. There is only so much they can do before they meet the end of their ability.

The only place we have to turn is Jesus. He’s our only hope. He has no limit, no end. The inhibitor may or may not work. Ezra may or may not make it to the bone marrow transplant. And if he makes it to the transplant, it may or may not stick. We simply do not know. But what I do know is this, “if God is for us, who can be against us?” (Romans 8:31). We have a God who is for us – for Ezra. So much so that he sent Jesus to make a way for us to have an eternity with him. Our eternity is not uncertain. I know with full faith that Ezra will be healed – it may be here on earth (Oh Lord, let it be), but if not on earth, I know that because Ezra has placed his faith in Jesus, he will be healed in heaven. And not because he’s been a good person or because he’s done the right things. He will be healed in heaven because heaven is real, Jesus died for Ezra to make a way and God has promised that these things are true in His Word, the Bible. Jesus said, “I have told you these things so that in me, you may have peace. In this world you will have trouble, but take heart! I have overcome the world!” (John 16:33). 

Friends, we are grieved. We are devastated. We are discouraged. We are weary. We are sad. We are confused. We are scared. But we are not hopeless. “My soul, find rest in God; my hope comes from him. Truly, he is my rock and my salvation; he is my fortress. I will not be shaken.” (Psalm 62:56). 

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It’s strange, I do not remember most of the details in this post. I do not remember going to visit Ezra. I don’t remember the pain he was in. I don’t remember the doctors telling us the chemo did not work. I don’t remember praying for the doctors. I don’t remember telling my boys about this news. As I read about that day, there are so many pieces that my mind does not recall. I imagine many of the pieces of the process losing Ezra have been tucked away in my brain; still too painful to recall. But my body recalled it. I am learning that there is a strange disassociation that comes with grief and loss; memories that are too painful to hold and yet the body still knows they are there.

As I read this post, I found myself grateful for the reminder at the end: “My soul, find rest in God; my hope comes from him. Truly, he is my rock and my salvation; he is my fortress. I will not be shaken.” (Psalm 62:56). 

If I’m honest, I have felt shaken. I have felt undone and broken. But God has been faithful. He is still my salvation and my fortress. He is the only place my soul can find rest. I’m thankful for this hope. I’m thankful that even as memories fade and I cannot remember details of this traumatic moment yet my body feels it so acutely, I can remain confident of God’s steadfast love, presence and faithfulness. It was our only hope three years ago and so it remains today.