Malachi is now up to 23 pounds of traction. He hit his original goal of 21 pounds on Tuesday and they decided to increase the goal to 25 pounds. Tomorrow we will reach his maximum, assuming they don’t change the goal again.

He has struggled with the increase and has days where he is in immense pain as shown by his heart rate, blood pressures, and communication. On those days he is given narcotics to help him cope, but even those don’t seem to take the edge of the pain off.

Then there are times where he just mentally shuts down and sleeps for days at a time, his body and mind simply exhausted. I am overwhelmed FOR him. I can’t imagine the inner dialogue happening in his mind right now, and the helplessness that he continually feels on a daily basis being exacerbated by the addition of pain.

Every now and I then I can get him to crack a smile. I cling to those moments.

I am still working hard to distract him as much as possible. There are nights when he is ready to play games and interact. And those are usually followed by days of sleepiness.

He went for x-rays this morning and there is visible progress in the stretching of his spinal cord. The first image on the left of each photo comparison is under 8 pounds of traction, and the one on the right is under 22 pounds of traction.

As I mentioned before, Jake and I can’t help but find comparisons with Malachi and the Princess Bride. It’s okay to laugh at the similarities.

Malachi is headed to the operating room a week from tomorrow to have a full spinal fusion. During this surgery his halo will be removed- in some ways it is like switching one hard thing for another. But then we will be able to focus on Malachi healing and making progress that isn’t undone every morning with added weights.

We are 17 days in and have at least 2 more weeks to go.

Jake and Levi are planning to spend the weekend here and Malachi and I are both looking forward to the visit very much! I need a friend right now to sit by the fire with me. Not someone to distract me, but someone to just sit and silently feel. There is a deep pang of loneliness that has started growing deep inside of me…not just for another human being present but someone that can feel the depth of the suffering without pity. I think Jake is the only fix for that.

(I know a handful of you are going to read that paragraph and just see the “I am lonely” part and try to gift me your presence; while I appreciate the thoughtfulness I have to be pretty selective with my time right now as I am actively caring for Malachi the majority of the day and can’t handle entertaining company. But THANK YOU for sitting by the fire with me from afar!)

I miss Levi with every ounce of my being. I have tried really really hard to not think about it, but I am going to allow myself a moment to mourn my path of motherhood. I am continually being asked to pick which child receives my attention and focus. Levi already has attachment issues with me; I can’t leave the house for more than an hour without him going into hysterics. Jake says he is waking up at night frantically yelling for me and trying to find me in the house. I wish I had been given a chance to prep him more for this outcome and distance.

If I am speaking honestly, I am extremely discouraged right now. Yes, we are seeing physical progress but it has come at such a cost. And I still can’t shake the idea that we could have done this differently from the beginning had I asked the right questions and advocated better for Malachi.

Sitting bedside and watching my boy suffer will never be something that my heart accepts…even when it is seen as medically necessary.

You may have read this on a previous post, but it feels fitting for tonight.

In the Bible, it rained for 40 days and 40 nights.
Day 41 came and the rain stopped.

Moses committed murder & hid in the desert for 40 years.
Year 41 came, and God called him to help rescue Israel.

Moses went up on the mountain for 40 days.
On day 41, he received the Ten Commandments.

The Israelites wandered in the wilderness for 40 years.
Year 41, they walked into the Promised Land.

Goliath taunted Israel for 40 days.
Day 41 came, and David slew him.

Jonah preached a message of repentance to Ninevah for 40 days.
On day 41, God stopped His plan to destroy them.

Jesus fasted and was tempted for 40 days.
Day 41, and the devil fled.

After His resurrection, Jesus appeared to His disciples for 40 days.
On day 41, He ascended into Heaven.

All this to say…don’t quit. The rain will stop, the giant will fall, and you will enter your “promised land.” Don’t give up at 40.

41 is coming.

Credit: McKenzie Miller

I am trying to stay focused on our Day 41. The day that Malachi is smiling again, released from these weights that steal the quality comfort from his life.

Please pray that the medical team continues to see Malachi for the complex and amazing boy he is, not just a textbook neuromuscular scoliosis case following a flow chart.

Please pray against my cynicism as we continue this process. Pray that I feel trust and confidence again.

Please pray that Malachi’s pain continues to be managed and we get to the other side without devastating effects to his mental health and spirit.

Please pray for Levi, that his heart won’t build resentment towards me or Malachi for the sacrifices we are asking him to make right now.

Please pray for supernatural strength for Jake and clarity of mind in taking on all of Levi’s medical needs during this time.

Thank you for the kind messages, cards, and gifts you have been sending our way. We have read and treasured each and every one and the Lord has been using you all to lift our spirits up greatly!

Sincerely,

Leah