We spent most of our week tucked into the house, trying to help Malachi get back to his baseline (somewhat successful) and trying to keep Levi from going stir crazy (less successful). We took lots of rides in the new “little truck”, as Levi calls it, and spent some time on the playground. I am so thankful for the many things we have at our home to make life here an adventure, especially on the harder days when we aren’t able to get out due to health reasons. In the past our family has gone into lock down mode for flu season to prevent the boys from getting terribly sick. The freedom to play here without fear of germs is an incredible blessing.

But alas the germs still manage to find us every now and then. Jake came down with a cold the day Malachi came home from the hospital last week and despite our attempts Levi ended up showing symptoms mid week. By Thursday he was running a high fever and was very sick.

When his airway swells it cramps the space, which is already small to begin with due to his paralyzed vocal cords. He gags very easily during these times and can’t keep food down. He hasn’t been able to keep any formula down for 3 full days so we are running Pedialyte through his gtube to make sure he stays hydrated. The doc confirmed no ear infections this go around and said we just needed to ride it out.

Malachi is not showing symptoms at this time but we are cautiously watching him. He just finished his antibiotic for pneumonia and adding a viral illness on the end of that will devastate his system. We have been continuing his breathing treatments and chest therapy to keep his lungs clear and he sounds so much better this weekend than last. He is also perking back up!

We have been in survival mode this week, running on very little sleep trying to meet the needs of the boys. I am really hoping this week leads to some restful nights for everyone.

Malachi threw his head back early last week while coughing and managed to knock my jaw pretty hard from the side. I heard a pop and by the next day I had a line bruise from where it must have slid out of joint. My teeth weren’t lining up quite right and it was difficult to chew and speak clearly but we ended up in the hospital so I just put it on the back burner. It slowly started to feel better but something still just felt off. I have been working with a local chiropractor trying to slide it back into alignment but oh boy, what an uncomfortable issue. It has been the ”cherry on top” of an already hard week.

But we have had some fun moments this week too! On Saturday we headed to a local Christmas tree farm to pick out a tree. We had promised the boys we would go the day after Thanksgiving but Malachi’s hospital stay adjusted that plan a bit. We then planned to go mid week but Levi got sick. Both of them were so excited with anticipation and even though Levi was sick we felt like it would be a fun socially distanced outing for him.

Malachi was practically giddy when we pulled in, incredibly excited about feeling all the trees and picking one out. Levi had stated he wanted a ”spicy” tree (spikey/sharp) but Malachi likes to touch them before making his decision. We thought if we took the wagon this year we could get him up close to each tree and we were right. But we didn’t count on the rugged terrain and Malachi took a wild ride when the wagon flipped over mid hunt. His face was priceless as he tried to process why he was sideways, but thankfully we had him strapped into his Special Tomato seat really well so he was not injured.

After wandering around for an hour we settled on a soft, fat tree and home we went!

We are not big holiday people but we are trying to find a few traditions to establish as the boys grow. The Christmas tree is definitely a keeper and both of the boys thoroughly enjoy having a decorated tree in the house.

Levi has been missing a lot of his basketball practices and games lately so we hunted down a small basketball for him so he and Malachi could ”practice” at the house. Trying to teach a toddler a sport is a very comical experience.

We have been trying to make sure Malachi is included in our basketball practices and Jake and I make it a competition of sorts to see who can help Malachi dribble the best. Here is a video for you:

2 Corinthians 4:6-9, 16-18

For God, who said, “Light shall shine out of darkness,” is the One who has shone in our hearts to give the Light of the knowledge of the glory of God in the face of Christ. But we have this treasure in earthen containers, so that the extraordinary greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not abandoned; struck down, but not destroyed;

Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day. For our momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

This chunk of scripture is worth reading again, and again, and again.

I have been really trying to unravel so many emotions over the last week. I know I have used this scripture in blogs before but it summarizes my current inner dialogue so perfectly.

Afflicted in every way, but not crushed

Perplexed, but not despairing

Persecuted, but not abandoned

Struck down, but not destroyed

But tonight I want you to read that verse through the eyes of my Malachi. And let the power of those words really sink into your heart the way they have rooted into mine.

What a beautiful reminder that our bodies are simple earthen vessels. They were never created to impress. They were never created to catch eyes. They were never created to last.

Instead, they were created to hold a beautiful light inside….a fire that God will stoke and renew day by day if we are willing to be used as a simple vessel.

I think about my Malachi and how silly it is for me to focus on his outward differences when I know without a doubt that God has illuminated the world through his beautifully broken body. Did God not do the very same thing through the body of His broken Son?

I like to picture each new diagnosis, each new warrior mark from a surgery, each new medical issue as another crack in an earthen vessel that allows more of God’s light and joy in Malachi to burst through, radiating everyone witnessing his suffering.

The name Malachi means ”God’s Messenger”. We chose Malachi’s name the day we found out he was a boy, and I prayed this meaning over his life. And oh, how God so graciously answered that prayer. Through Malachi’s life I have come face to face with my God. The scriptures have come to life right before my eyes as we navigate life with Malachi. What a messenger he is for the Lord.

”While we look not at the things which are seen, but at the things which are not seen.” It takes a special eyes to be able to focus on the unseen. But I think that is a reminder my heart really needed this week.

In my moments of desperation, God grant me your eyes to see the unseen. And may He continue to renew our inner person day by day.

Much love,

Leah