Malachi went back to the operating room today around lunchtime. We spent most of the morning before they took him back snuggling in the bed and singing songs. Malachi smiled for the first time since surgery and was back to his bubbly self. Had we not had a screw slip out of the spine we would have been discharged today and I was 100% confident in them sending us on our way.

Malachi’s surgery went faster than Monday’s as they were able to enter a portion of the same incision that had not healed yet. They retrieved the broken screw successfully and shortened the rod before stitching him back up.

Then they put Malachi in his u-shaped halo by surgically screwing 6 pins into his skull, two on his forehead and two above each ear. I underestimated the size of the pins and when I saw him post op it took my breath away. Seeing his perfect little face with such large bolts drilled right through it made my stomach come up into my throat.

I was absolutely overcome with emotions, feeling the suffering of my son in such a big wave. As I leaned forward to look at these pins the Lord spoke to me and declared “He (Christ) was pierced for our transgressions, He was crushed by our iniquities”. WOW!! What a powerful image for me, making the cost of the cross so monumental and tangible to me. Seeing the suffering of my son, pierced with these pins is such a minor infliction compared to Christ’s death on the cross. Oh how He loves us!!!

Isaiah 53:3-5 “He was despised and rejected by mankind, a man of suffering, and familiar with pain. Like one from whom people hide their faces he was despised, and we held him in low esteem. Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.”

Let me reassure you, I am not comparing my son to Christ, nor am I comparing their suffering. But by seeing the minuscule suffering of someone that I love with all of my heart I was able to feel the effects of Christ’s sacrifice a little bit deeper than before.

That parallel then took me to the heart of Mary, sitting sideline and watching her son’s own suffering and death. Today I have had the heart of Mary at Golgotha, struggling to understand the weight of the suffering I am witnessing. Struggling to understand the why. Wanting desperately to take his place, to declare his innocence, but those pleas falling on deaf ears.

I have cried so much today. I am sad for Malachi and this new loss of normal. I am not ready to share photos of him quite yet, as I wouldn’t want someone sharing similar photos of me directly after such a big surgery. But I can use my words to explain what his new normal is.

The horseshoe metal ring that is pinned into his skull has an upside down “V” on top, and at the top of that is a carabiner. Built up over his bed is a system of metal rods and pulleys, which are hooked to that carabiner. Weights are added to the other end of the rope, essentially hanging him by his skull from a rod above his bed.

Yes, it looks as horrific as it sounds. And I can’t imagine how Malachi must feel right now. He is very sleepy from surgery so we are keeping him medicated and comfortable, but I am having a hard time picturing how this is going to go for the next several weeks, particularly with his mental health.

Jake and Levi are making plans to travel on weekends to spend time with us. But this is very contingent on their health as Malachi simply cannot get sick. That would be devastating to his system and we are trying to keep him stable enough to go back into surgery in a few weeks. In the meantime we are FaceTiming and talking often. Levi even lost his other front tooth today!

A HUGE thank you to so many of you who sent over gifts for our family. I don’t know that words can do justice for the blessing of that load lifting off our shoulders. Last night I was able to take deep breaths, knowing that our plans don’t have to revolve around having the finances for hotels and gas. It physically felt like a burden had been lifted and felt like a hug from God Himself. And being able to offer fresh movies to Malachi last night blessed his little heart and brought him such joy.

I am going to leave you with another C.S. Lewis quote today, as reading his books has been excellent at making my mind focus on other things.

“When I lay these questions before God I get no answer. But a rather special sort of ‘No answer’. It is not the locked door. It is more like a silent, certainly not uncompassionate, gaze. As though He shook His head not in refusal but waiving the question. Like, ‘Peace, child; you don’t understand.’” -A Grief Observed

Prayer needs tonight are pretty easy for me to list. Malachi’s physical comfort and pain level, and specifically his mental health. Levi’s tender heart and medical PTSD that is at play through this hospitalization. Jake’s strength and energy to continue normalcy with Levi but also absorb the responsibilities that I had to lay on his lap, specifically our soccer ministry.

And selfishly please pray for me. I am feeling like I failed Malachi in not exploring all routes before starting this process. I feel like we are in a reactive place, not having anticipated these setbacks in the way we should have. Should I have pushed for this surgery sooner? Should I have forgone the initial fusion and jumped straight to the process we are doing now with halo traction? I feel like a bystander in the planning and implementation of this plan we are on, which is not like me. It makes me feel like I was lazy in my advocacy efforts for Malachi and it is planting seeds of bitterness in me. Bitterness towards myself and bitterness for some of his providers, which isn’t healthy.

Our family is very much at war right now and the daily expectations of each of us right now are getting overwhelming. Please pray for our stamina and that we can continue to stand in the gap for one another.

Thank you for loving my boy the way that you do and taking the time to check in on him. He is the bravest kid I know. I am so proud of him and the grace he gives to others, even in his times of suffering.

Much love and gratitude to you,

Leah