As this long day draws to a close I am tired, but not sleepy, my face is puffy from crying, I have a dry throat and dry hands, a slight headache and a desire to write down absolutely everything. I want to describe the feeling of being entirely empty and entirely resolute. I want to explore how I can be deeply sad and incredibly hopeful at the same time. I want to talk about holding Joel’s hand, walking down the hall wanting to soak in the moment, to memorize the feeling of having his hand in mine, to let it matter, and then hating that my thoughts swing to “because what if I can’t hold his hand one day” and hating that thought, wishing I could just appreciate each second of Joel without that appreciation spilling into the pre-mourning I refuse to do, because I believe he will live, but instead of fighting the brief thoughts of mourning, choosing to fight instead that lie that says that those thoughts betray some doubt, some mistrust of God, when I know that those thoughts make me human and that God knows I am human and does not make Joel’s victory dependent on me never feeling unsure.
I want to jot down the things I forgot to write earlier, but that I remember now, like when Ryan asked the doctor if Joel would develop hydrocephalus and he told us that he wouldn’t have time to, because he would probably die from swelling in the brain stem before that would happen. Of course that’s not a helpful thing to write about, but perhaps it’s practical because it reveals the timeline we’re dealing with and I keep wondering if the average person who follows Joel’s story can tell that this time really is different form all the other times. Every time we could only give Joel treatments that would not cure him, but we always knew that the treatments we had given before had always worked, and so even if it wasn’t real hope, it had become a kind of hope to us. This time we can not do what has always worked. The part of me that waits expectantly on the Lord and His glory in our circumstances is glad that there is nothing left but Him now, and doesn’t want the idea of the trial to distract us from the reality of what we’re facing. The mommy part of me wants to reverse this train somehow, wants to shout to God that I was really fine with all the ups and downs and waiting and half-miracles and that ever wanting more than that was foolish and naive, because the pain is real, and the sadness is deep. I want to shout out, “Look what God is about to do, watch how He delivers Joel!” and at the same time I want to roll up in a silent ball and wait it out with fear and trembling so aware of all of my doubt, but yet convinced that my doubt is insignificant compared to God’s faithfulness.
I want to talk about the trajectory of faith: how every scripture, vision, prayer, comment, dream that has ever been shared with me about Joel in a way that impacted me has pointed toward life and glory. How I have never once felt God preparing me to release Joel to him, but how that’s not the same as having a specific infallible promise. I want to talk about knowing that heaven is good, the ultimate goal, the prize and our full and ultimate redemption, and how, entirely believing that, I can not make peace with cancer carrying Joel to heaven.
I want to explore all of these things in a deep and meaningful way, but as you can see, there are too many thoughts. They circle and build, and then they are crushed by a fleeting thought, a “what if” a “how will we ever,” and while I refuse to dwell on those thoughts I remember that they are also not strong enough to be my downfall.
We wonder what to tell our children and when. Do they need to shoulder the burden of what is coming? Or can they wait to feel those things in the moments, not anticipating the grief that likely lays ahead of all of us miracle or not?
I can not write about each of those things tonight. I have not had time to process them fully myself, but I suspect that these same themes will pop up again once I’ve had the time to let my spirit dwell on them, for the Holy Spirit to transform them to wisdom, making them solid and weighty, not the flighty thoughts so easily torn by emotion and worry.
Instead, I will tell you this story. As we left the hospital, four long hours after we arrived, Caleb had seen me cry much more than I would have preferred. He had asked why, and I had told him that there were new tumors and I was still processing that, leaving out the worst of everything, and glad to see that he could accept this and go back to playing with his brothers. I had searched his face for the anxiety that sometimes builds there, but it was nowhere to be found, and I was so relieved. His life was unchanged, even if mine was still shaking. We piled into the van, and when we turned on the radio, the song “speak life” was playing. Not a favorite of mine by any stretch of the imagination, not a song that had ever impacted me or mattered, but I had spent the past two days dwelling on abundant life, and as the song played my kids sang aloud, Caleb singing at the top of his lungs and Elijah piping in with a word or two every few sentences. Ryan and I are crying in the front seat, relieved to finally be able to cry since the children can not see our faces, and all the while they are singing out loud and clear, “Speak life, speak life, to the deadest, darkest night. Speak life, speak life, when the sun won’t shine and you don’t know why. Look into the eyes of the brokenhearted, watch them come alive as you speak hope, you speak love, you speak life.” They don’t know what we’re facing, they don’t know the things that we won’t be able to keep hidden from them much longer. They are just singing about life together in the car. Their joy lifts a little of our pain and intensifies a little of our sorrow at the same time, but we hear God encouraging us in a day overshadowed by so many thoughts of death to keep speaking life.


There is one comment for this post.

  1. Wendy on January 4, 2014 7:36 am

    I discovered Joel’s story last week from watching the video that Soul Pancake made. Ever since then I have been keeping up with the blog and praying for you all. A few days ago I told my sister about Joel too, and I think that she is praying now, too.
    I am so sorry about Joel. Many of my family members have died from cancer, but this feels almost as painful to me personally, maybe a little more. I think it’s because you have kept everyone constantly updated with your journey, through the mountains and valleys. You are so firm in your faith, and I admire that so much.
    In my daily devotional book (Jesus Calling by Sarah Young), I found an entry in it that I would like to share with you. It is written as though from Jesus’ point of view. Here it is:
    I am able to do far beyond all that you ask or imagine. Come to me with positive expectations, knowing that there is no limit to what I can accomplish. Ask My Spirit to control your mind so that you can think great thoughts of me. Do not be discouraged by the fact that many of our prayers are yet unanswered. Time is a trainer, teaching you to wait upon me, to trust me in the dark. The more extreme your circumstances, the more likely you are o see My Power and Glory at work in the situation. Instead of letting difficulties draw you into worrying, try to view them as setting the scene for My glorious intervention. keep your eyes and your mind wide open to all that I am doing in your life. (Ephesians 3:20-21, Romans 8:6, Isaiah 40:30-31, Revelation 5:13)
    You all are wonderful, and I will continue to pray for your family.

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