It is 1:00 in the morning and I can’t get my brain to calm down so I figured it would be a good time to write this week’s blog.

The last few weeks have been filled with play dates, playground family time, and lots of family adventures.

We celebrated Father’s Day with some ice cream! We are so thankful for Jake and the amazing father that he is!

Levi and I are in Cincinnati and he will head to the operating room today for another microlaryngoscopy and bronchoscopy with lung lavage. This is a dual procedure done by his Cincinnati team so each group will do their part and separately meet with me after.

The older he gets the later his operating room time is, as they give the early slots to the youngest children. Tomorrow’s check in is at noon and he has officially gone NPO (no food by mouth) until after surgery. This is hard to navigate with a hungry 6 year old so I let him stay up as late as his little eyes would allow him to, hoping he would sleep in!

We typically have to go up for pre-ops with each specialist several days in advance but their calendars were full this year so they are going to do pre-ops in the literal surgery pre-op area.

We sign off on all routine trimming and dilating as needed once they get a visual look at his airway. Sometimes they trim the arytenoids back if they are blocking his airway, sometimes they attempt a balloon dilation (although I think we are past the point of that being a productive option), and sometimes other minor trimming is needed. If they find anything major that needs to be done we reschedule that for a later time and come back to Cincinnati. This year will be a true outpatient procedure, assuming all goes as planned.

They will also clean his lungs and test the fluid inside of them to determine if he is aspirating any food or liquids (a very common problem with bilateral vocal cord paralysis).

Last year was a pretty traumatic surgery and recovery for Levi. He was in significant amounts of pain and I was afraid his body wouldn’t easily forget that trauma. And this week that has proven to be correct. He is dealing with some pretty big emotions, mainly anger.

He and I made the trip up a few days early to allow him to do some fun things, hoping the time together doing fun things would help smooth the road before we do the hard things.

We went straight to Kings Island, an amusement park in Cincinnati, for some roller coaster fun. He rode every single coaster in the kids area multiple times, including some questionably big ones for his size! His smiles were such a treasure to me.

We spent lots of time with family, making sure to visit all the Ohio grandmas. My boys are blessed to have all of their grandmas and great grandmas in their lives!

We also went to the Air Force Museum and we were very impressed! If you are ever in the Dayton, OH area or have a love for planes you will have to check this place out. Admission is free and we could have spent hours there.

Malachi and Jake stayed in Tennessee this year and are enjoying some guy time this weekend. I miss them terribly, but the one on one time with Levi is always a valuable gift before a hard operating room handoff.

Malachi has been trying out some new communication devices and it has been amazing to watch. He is enjoying having his opinions be heard loud and clear through switches (our recordable voice but activated by him).

He is developing quite the sense of humor these days and pulled a trick on me the night before Levi and I left for Cincinnati. It was 2am and he was clearly trying to get my attention and holding his lipped pursed (his sign for sad).

I asked him why he was so sad and went through a list of options.

Are you hurt? No

Is your stomach upset? No

Does your head hurt? No

Are you sad mommy is leaving for Ohio tomorrow? YES YES; and he continued to hold his mouth in a firm sad face.

At this point I got emotional, also feeling the weight of the week on my relationship with Malachi. I explained through my tears that there are times where one brother really needs mom and that I would miss him terribly while we were gone. I asked him for a hug and he signed yes, and when I leaned in he started cackling. He laughed and laughed, smirking with a sly smile.

I asked him “Malachi, were you just kidding?” And he signed a hearty YES YES back to me. I asked him “So are you really not sad that I am leaving?” And he signed NO back to me, all while continuing to laugh. He is becoming quite the prankster.

Today marks Levi’s 31st procedure. His story is so unique, so beautiful, and so full of God moments. It has profoundly affected him (and I) in so many ways. Levi is God’s handiwork, created in Christ Jesus to do good works that God prepared in advance for us to do (Ephesians 2:10). And while I believe that with all my heart and know it to be true sometimes the will of God is hard to accept.

Levi and I are sharing a bed here in Ohio and two nights ago as we put our heads on our pillows he turned and said “Mom, will you tell me the story about Jesus’ crucifixion again- how he died for my sins?”

It was such a specific request. I snuggled up with him and started the story with Jesus heading to the garden to pray. And as I talked with Levi about Christ’s prayer in the garden it was very clear to me that this prompting from Levi was the work of the Holy Spirit.

Luke 22:40-43

“When He arrived at the place, He said to them, “Pray that you may not enter into temptation.” And He withdrew from them about a stone’s throw, and He knelt down and began to pray, saying, “Father, if You are willing, remove this cup from Me; yet not My will, but Yours be done.” Now an angel from heaven appeared to Him, strengthening Him.”

Levi wanted to know what Jesus meant and it was such a beautiful opportunity to explain that even Jesus spoke his desires to God- and accepted the hard things that God asked Him to do, knowing it was all a part of a big plan for Jesus’ life.

I have prayed that same prayer over Levi’s “cup”….but I am guilty of stopping it too soon.

Yet not my will but yours be done.

It was a much needed reminder to my heart that God has a purpose for our suffering and that He is using it for His glory.

One more final thought that I want to share with you. Levi has been struggling with intense fear over the last several months. It has been a gripping fear- if I leave the room he is in he starts panicking. As the surgery date has come closer this fear has been multiplied and affects a large part of his day. But over the last two days I have listened to him sing the same song over and over again, word for word, and I believe with everything in me that God has intentionally put this song into his heart this weekend. Every time I hear his little voice speak these words I feel the presence of the Holy Spirit…

I asked him what song he was singing and he said “Tremble Mama!” Here are some of the words he has been singing on repeat:

Peace, bring it all to peace
The storms surrounding me
Let it break at Your Name
Still, call the sea to still
The rage in me to still
Every wave at Your Name
Jesus, Jesus, You make the darkness tremble
Jesus, Jesus, You silence fear
Jesus, Jesus, You make the darkness tremble
Jesus, Jesus
Breathe, call these bones to live
Call these lungs to sing
Once again, I will praise

Thank you God for seeing my son’s fear and giving him a song in his heart to help him overcome it.

Psalm 56:3-4 “When I am afraid, I will put my trust in You. In God, whose word I praise, In God I have put my trust; I shall not be afraid. What can mere man do to me?”

Please pray for our family this week. In addition to today’s Cincinnati surgery we have 7 more appointments for the boys in Chattanooga starting tomorrow, and we have also added a LASIK surgery and two additional appointments for Jake. It is an overwhelming week that will require some faith and refilling from the Lord.

Sincerely,

Leah