Tomorrow is a big day for Malachi.

He will head back to the operating room for the third time in four weeks for a pretty major surgery. They will be removing his halo from his skull, which is a pretty minor thing in practice but monumental for Malachi. And most importantly, they will be doing a full spinal fusion, placing rods and screws along the sides of his spine from the top of his pelvis to the base of his neck.

We are praying that the halo traction was enough to stretch his spine and skin, requiring less plastic surgery involvement for his wound to heal.

We really need tomorrow to go well. We need a win. We need to feel progress. We need to see a clearing in the path of Malachi’s suffering.

I keep flashing back to Malachi’s birth. I didn’t get to meet Malachi until he was 3 days old, as we were both in pretty rough shape. But after I met him the neonatologists and several nurses sat Jake and I down in a small conference room and presented a bleak picture. He had terrible brain bleeds on both sides of his brain. He was only 1 pound 12 ounces and born without a heartbeat. They explained that he would likely never be able to speak, eat, or breathe on his own. The presented a life of suffering for our child. Then they asked us, “How would you like us to proceed?” They wanted to know if we would like to continue life-saving measures for our child or let him peacefully pass.

In that moment I wanted so desperately to believe in a God-sized miracle for Malachi. I wanted him to defy all of these words they were speaking over him. I wanted God to use my boy for one of His biggest miracles!

That day we looked at those doctors and said “He’s here for a reason, we want you to save him.” We believe that God determines our first and final breath, and every day that Malachi is still here is because God has chosen for him to be.

Some of you may read that and maybe even think that our decision was a selfish one, focused on what we wanted. You may even point at this road we are currently on and say “That poor boy…”, wondering if death at day 3 would have been more humane.

And if I am being perfectly honest with you…I have those same thoughts sometimes when I am in the dark corners of my mind. I have grappled with those same thoughts while I sat by his bedside and watched him struggle to breathe this week, in intense pain from halo traction.

We never got our “big” miracle. Our child has, in fact, lived a life full of suffering and hard things. And if I believe that this earth is all we are here for then we are pretty terrible people to have allowed him to go through that. We could have prevented his suffering.

But as children of God, Jake and I firmly believe that we were made for more than this world. We are all just strangers passing through a foreign land and heading home. And we believe that it is through Malachi’s suffering that God has revealed Himself to us, and to many of you.

And in between these monumental rounds of great suffering there has been such great joy for Malachi. His 12 years on this earth has been filled with contagious laughter, smiles, and a joy reflects the Lord. Knowing Malachi will absolutely change your life, your perspectives, and your definition of “quality of life”. Malachi is such a unique and special kid.

I am struggling to control my emotions as I try to type this next sentence….but it truly reflects every ounce of my heart….

If Malachi’s suffering has introduced even one person to the Lord, or strengthened your walk with Him in any way (as it has done mine) then it has given purpose to all of this pain. So many of us wander through this life, trying to figure out what mark we are meant to leave on this earth. God very graciously made Malachi’s purpose crystal clear…he was created to give this world a glimpse of the Father…his joy, his love for others, his purity. He has chosen Malachi to be a bright light in a broken world.

Malachi has been created to be a vessel of honor, chosen by God to carry out a very special purpose of displaying God’s glory and power through his brokenness.

2 Timothy 2:20-21 “Now in a large house there are not only gold and silver vessels, but also vessels of wood and of earthenware, and some to honor and some to dishonor. Therefore, if anyone cleanses himself from these things, he will be a vessel for honor, sanctified, useful to the Master, prepared for every good work.”

As Christians we often pray to “be used by God”, as if He were waiting on us to agree to a contract of sorts before hardships can come.

But I believe that while our willingness alone is beautifully honoring to Him, what He really asks of us is Lordship. It is trusting Him wholly and completely, accepting the path that He has chosen for us to walk.

As we go into tomorrow I am leaning heavily on God’s Word. When you don’t believe in God, suffering is just simply suffering. But when you believe in Him you can look past the pain and see glimpses of the purpose. Here are a few verses that have come to life for me again this week.

Isaiah 30:20-21 “And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you, saying ‘This is the way, walk in it,’ when you turn to the right or when you turn to the left.”

Romans 8:18 “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

There is a really good chance that this entry won’t make any sense as I am worn out and mentally cloudy. But as we enter another hard 24 hours I am covered with the peace of God. There isn’t an ounce of trepidation or worry in me, as I know we are exactly where we are meant to be.

We are ready to see that smile again!

Thank you for continuing to encourage our family. And to care about our amazing boy. Tomorrow he gets another pretty cool scar on his back. Another mark that tells of another battle our warrior has conquered. I will do my best to update the blog sometime tomorrow evening.

Oh, and just in case you were wondering, his brain shunt is absolutely disconnected. We verified it with CT this week and found imaging from October where the break was evident. We cannot fix it during tomorrow’s procedure due to infection risk but will schedule it with his neurosurgeon in 4-6 weeks in Chattanooga.

Sincerely,

Leah