Lucy Update Day 3: Tears = Food

(Update: On June 5, 2024 Lucy passed away and is in the arms of Jesus)

I ask you to not skip reading this Psalm just to get to the update.

Psa. 42:1    As a deer longs for flowing streams, so I long for you, God. ² I thirst for God, the living God. When can I come and appear before God? ³ My tears have been my food day and night, while all day long people say to me, “Where is your God?” ⁴ I remember this as I pour out my heart: how I walked with many, leading the festive procession to the house of God, with joyful and thankful shouts.
Psa. 42:5    Why, my soul, are you so dejected? Why are you in such turmoil? Put your hope in God, for I will still praise him, my Savior and my God. ⁶ I am deeply depressed; therefore I remember you from the land of Jordan and the peaks of Hermon, from Mount Mizar. ⁷ Deep calls to deep in the roar of your waterfalls; all your breakers and your billows have swept over me. ⁸ The LORD will send his faithful love by day; his song will be with me in the night— a prayer to the God of my life.
Psa. 42:9    I will say to God, my rock, “Why have you forgotten me? Why must I go about in sorrow because of the enemy’s oppression?” ¹⁰ My adversaries taunt me, as if crushing my bones, while all day long they say to me, “Where is your God?” ¹¹ Why, my soul, are you so dejected? Why are you in such turmoil? Put your hope in God, for I will still praise him, my Savior and my God.

A few things I notice from this Psalm. The Psalmist is lamenting deeply while he cries out in faith. He is depressed and remembers God’s overwhelming love at the same time. He asks God hard (maybe to some it sounds “disrespectful”) questions, and yet still worships him in the end. In my human frailty I often collapse into the “either/or” of these double binds. I’m either worshipping or I’m dejected/doubting. I’m either depressed or remembering God. I’m either grieving or turning my soul towards God. What I’ve realized today is that the Holy Spirit opens my heart’s capacity as I surrender to him. All of these things are possible at the same time. This mystery will continue to be something to explore as we journey through this valley.

Medical Update: June 3
Today was so difficult. Last night was interrupted often with Lucy’s monitor going off as her heart rate soared over 200. Her heart experienced some arrhythmia and I wondered if this would be it. Her electrolytes were way off, as well as her blood pressure. The team amazingly was able to course correct and thread the needle so that by morning she was more stable. However it wasn’t just a “neuro-storm” that she experienced. Throughout the morning she was experiencing both diabetic insipidus and something more rare called cerebral salt wasting simultaneously. I won’t bore you with the details, if you know you know. But the reality is that the pituitary gland in the brain that controls electrolyte function was showing damage. This is one of the “deeper parts” of the brain, showing that her swelling is continuing to cause deeper damage.

This confirms the fear from the beginning. The brain injury was extremely catastrophic. The penetration of the racket shaft was very deep into her brain and caused immediate arterial bleeds (If you’re interested in a medical article around the very rare but deadly results of a faulty badminton racquet you can read here. Just know our situation is way worse than the reported case here due to the location of penetration). I remember holding her in my arms before EMS arrived, and her pupils were unresponsive even then. If she was an adult with the same injury, the neurosurgery team may not have operated due to the appearance of unsurvivability. The significant lack of brain function over the past 48 hours demonstrates this reality that we are utterly devastated by. If there is any good news in this, it’s that she hasn’t felt any pain over the past few days. We will keep waiting on the Lord, getting second opinions, and exhausting every possible avenue while crying out to God for a miracle. However, as of now, our beloved daughter has been showing all the signs of brain death for the past few days. There is a very good chance that she passes away and meets Jesus within 24 hours.

Family/Spiritual Update
My body convulses in typing that last sentance. We begin the day by reading Psalm 23 out loud to Lucy. It was so hard yet so comforting to read the last verse. My poor wife is barely eating (we got some Chick-Fil-A in her). We’re sleeping as best we can and our children are processing as best they can. I feel like I can learn from each of their types of grief. The grief of a mother is unique and gut wrenching to behold as she allows herself to plunge deep into her grief with God. I have so much to learn from her. The kids are all engaging in creativity and are making things for Lucy. We have taught them to only take what they can handle, which involves everything from just standing outside the room to kissing her. Sometimes all they can do is stand from afar, and that’s ok. My four year old’s responses and self-awareness was beautiful to watch. I’m so proud of him. He comes right up to the bed to hold her hand and talk to her. Then he goes to the window to look out at cars and anything else he sees to take a break, then he’ll return. From Shiloh’s creativity and sweet care, to Silas’ kisses and hugs, they each are being taught to understand their limits and to make a choice to grieve as they can. Whether that’s coming right up to her bedside to hold her hand or talk to her, or waiting while they craft something before entering slowly, it’s all welcome. I’ve learned from them to honor my limits as well as provide specific space to engage deeply with my grief where I’m not alone.

Today Bethany and I have processed through some of our regrets in parenting Lucy. In moments like this, they were bound to come up. The only way we can face them and not collapse into despair and shame is applying the gospel. Much of what we regret, especially regarding this situation, was simply human weakness or really nothing that we could have done. Even as we dare to venture back and inventory the past 6 years, we see sin and have confessed that freely to each other and even to Lucy today. We are not perfect, but by God’s grace she is a loving little girl who loves Jesus and loves her family, and God was pleased to use us in nurturing that in her. Because of the gospel we can own that beautiful truth without wrongful pride, while also owning our failures.

One more thing. I talked about fighting yesterday, and many have encouraged us to keep fighting. What are we fighting? I have no control over her physical body, but I can ask God to miraculously intervene against the devastating effects of the fall. This can be done without bargaining or self-inflation. I can wage war against the lies of the enemy that try to infiltrate the minds of my family and myself. By the grace of the Father given through the Spirit, the body of Christ, and his Word, we are fighting.

Please know that the only way I’m sane right now is because of the anchor for my soul that is the unchanging love of God shown in the good news of Jesus Christ. Christ died and was raised for Lucy’s right standing before God. Fellowship with God is all of our deepest need, which allows us to walk by faith in devastating physical trials like this. If you are confused about this or this is new for you, I’d love to talk to you about it or help you find someone to help you. Thank you all for your loving support.