A lot has happened in the last two weeks. Let’s start with some easy updates…

Levi lost another tooth. And I just can’t get enough of that sweet smile and new lisp.

Malachi had a special 12th birthday, and celebrated with his friends at school. He was so excited to bring ice cream for them and go to lunch (usually he goes in the afternoons after lunch is over).

He has such a fun personality and I love watching him interact with people outside of our family. I love that he feels confident enough to use his “voice” (signs) with others.

Levi has been building forts for him and Malachi to play in, which they both thoroughly enjoy.

Now let’s move on to the hard updates. I haven’t fully processed all of the information myself so bear with me as I try to translate it in real time.

About a week and a half ago the boys and I went to Vanderbilt to tackle 4 appointments. We met with his foot surgeon and got the final clearance from Malachi’s November foot surgery. We also met with the spinal surgeon, the anesthesia team, and did bloodwork to prep for surgery.

The spinal surgeon came in to talk through the surgery with us and we have had several calls with him since to clarify the plan. It is relatively complicated so I am going to give you a very general overview of what we are working with.

Malachi will head to the operating room first thing next Monday morning (February 24th). This surgery is to prepare his spine and skin for the second big spine surgery April 7th and will be focused solely on the lumbar portion of his spine down to his pelvis. They aren’t able to do a full fusion right now as his skin and spine aren’t able to tolerate the stretching that needs to take place.

He is the first surgery of the day and this one is expected to last 6-7 hours. They are going to cut an incision through his right side to gain access to his spine from the front. They will need to move his lungs and several organs around to get access to the spine and they will be scraping the discs out from in between each vertebrae. The final goal is that nature will take its course with bone resting on bone and “heal” itself together, thus fusing it. But it will need to be supported with several screws and plates.

In an ideal situation this will be easy to do. (Plan A)

It has potential to get complicated. They have options in place to be able to use cadaver bones to place in between the vertebrae if needed. Complications will lead to a slightly modified version of Plan A , so we are calling it Plan B.

If they aren’t able to get a good angle with the screws and plates and get the spine in a position that will set him up for success for the April surgery we will have to go to Plan C. The surgeon mentioned this one in our phone call on Friday and I haven’t been able to shake it out of my brain ever since.

Plan C is putting Malachi into a halo traction device after the procedure. They surgically pin a metal ring into Malachi’s skull and suspend that halo from a device that increases weight/traction slowly over time. The goal is to stretch out his spine before operating. He said that if we have to do this plan that he will be in the device (and hospital) long term until his April 7th surgery. Here is a photo I pulled off of Google so you can get a visual.

Each plan comes with its own hospital duration, with as little as a one week stay and as much as a 7-8 week stay. When we originally talked about this surgery in October it was 1 procedure and the recovery was quoted to be “about three days on the regular floor”, but obviously things have gotten more complicated the more they looked at his images. We won’t know until they open him up and start to work which route they will have to go. And again, this is all just preparation for another spinal fusion that is taking place in just a few weeks.

Maalchi is anxious and very nervous, and it breaks my heart to see him worry. Levi broke down into tears during the pre-op appointment when the surgeon was talking, filled with empathy for Malachi. We stopped the appointment and let him ask the doctor questions; “Do you think my brother will die in this surgery?” Ughhhh. We were all fighting the tears back and I was absolutely regretting my decision to bring him along.

Jake and I are feeling overwhelmed in so many different ways. Our first concern is for Malachi and the hard things he is about to endure, mentally and physically. This surgery has to be done…if it is left untreated he will reach a point where his organs are too smashed to be able to breathe and function. But what a massive thing for a 12 year old to endure. We expect this to be a massive hit to his lungs and they are already so damaged.

We worry about Levi. About how he will handle the schedule changes with us being apart. And how he will handle Malachi’s suffering, even if he isn’t there to witness it. God has blessed him with a generous portion of empathy and he feels so much. And he loves his brother tremendously. Jake will be staying home with Levi to help establish a bit of normalcy for him until we figure out what plan we have to proceed with.

There are so many things about this that take my breath away.

I don’t know when it happened but at some point in my life I developed the habit of compartmentalizing as a defense mechanism to help me manage stressful things. Compartmentalization is where a person separates conflicting thoughts, emotions, or experiences into distinct mental compartments to avoid discomfort and anxiety that can rise.

I can package up my emotions about something and put it on the shelf for later so I can focus on that day’s tasks and not be overwhelmed by what is locked in that box.

But eventually I have to pull the box off the shelf and open the lid. And this weekend I have started that process.

Sometimes we have emergency surgeries and I don’t time to process my emotions until after we get home. This is not one of those situations and the anticipatory grief I am dealing with is very real.

I am trying to busy myself with packing, but even that has been evoking so many emotions as I try to plan for a 1-7 week stay. How do you even begin to pack for such an unknown amount of time??

And in the process of thinking through what to pack I have allowed myself to consider the details of what Malachi is about to endure. And my heart just aches and aches for him.

This weekend I have been singing praise songs to keep my mind focused on God’s goodness. And each one makes me weep as I truly see that even in the hardest moments we are called to He is ever present and still working. I know there is a purpose in this surgery experience. There is a God plan we can’t see hidden deep within it. And even if I never get the chance to spot it, I trust that God’s plan is always perfect.

But I am still very overwhelmed. And emotionally fragile. I have had many people reach out to ask how I am doing, and if I am being honest I don’t prefer to talk about the surgery. I am just too fragile to enter those conversations right now.

I read a simple prayer written by David in Psalm 16 this week and it reflects my heart’s desire so perfectly.

“Preserve me, O God, for I take refuge in you.”

I am aware that there is nothing I can do to take Malachi’s place. There is no magic mom fix that will make this easier for him. So I have to lean on God, knowing that He is THE Comforter that will carry my son through this.

Some of you read things like this and decide that I have a magnificent faith. That my faith is somehow greater than others.

But the reality is that my faith is a survival faith. It is brewed in complete and utter humility as I know that I am not enough and He MUST be my portion as I am unable to carry this load alone.

“The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise.” Psalms 51:17

My spirit is broken. My heart is contrite as I look at all the times I fail to remember the goodness of God, even within suffering.

Please keep our family in your prayers over the next several weeks. I will be posting surgery updates on this site as a way to communicate, but please be respectful and sensitive of our focus on surgery day. The primary way the surgeon communicates from the operating room is through my cell phone, calling at least once an hour and more often if there are complications. Surgery days are focused solely on our Malachi and providing updates is pretty low on the priority list on those days- but please don’t think we aren’t grateful for your concern and prayerful support!

Thank you for walking through this journey with us, holding up our arms when we get weary.

Sincerely,

Leah