It has been an up and down few weeks from my last post. Levi’s airway is continuing to struggle with allergies and a now a head cold. He gets around 24 ounces of high calorie formula through his g-tube at night to supplement the extra calories he burns during the day and we are on might 6 of him not being able to keep the nighttime feed down.

In addition to him not getting those needed calories at night he has also not eaten well during the daytime clearly feeling a bit off, dehydrated, and crummy. He has lost a noticeable amount of weight over the last two weeks and I am struggling trying to get food into him. He has also been too weak to send to school most days this week and just seems so pitiful.

In the chaos of vomit catching at night I have accidentally forgotten to turn his feeding pump off at night when I am frantically unhooking him. As a result, I pumped about 20 ounces of formula into our carpet/pad underneath. Whew our house smells a little rough right now!

Levi had an eye appointment on Thursday and he was able to do a test that he has never been still enough to complete in the past. This test allowed them to get in depth imaging of his optic nerve; these nerves have been on the radar for the doc since birth.

Prior to this imaging they had told us that his left optic nerve was deteriorating due to brain damage caused by oxygen deprivation in his first few weeks of life (a diagnosis called Hypoxic ischemic encephalopathy). They had warned us before that it looks as though he is losing vision in his left eye due to this nerve damage. This week’s tests revealed that the damage exists in BOTH optic nerves and he is on the edge of the line for requiring accommodations for vision impairment (enlarged print materials, etc). They have ordered more testing to check the tissue beside the optic nerves to see if the damage has spread to those areas as well.

This is obviously really disheartening news. Especially since there is nothing that can be done to reverse the damage. I suspect that some of his limitations in school can be attributed to his inability to see well and process what he is seeing.

I have been up and down on the medical mom roller coaster. There is a part of me that is just so discouraged for him, recognizing how many ways he is set up to fail in our society. Then there is the faith part of me that recognizes that God’s story for Levi’s life is still being written and to simply be still and see what God will do.

Malachi has had a rough week as well, also catching a head cold. For a typical child the recovery from a cold is a simple 3 day process. For Malachi it is a pretty intense life-changer, often taking 7-14 days to completely overcome. Right now he is on oxygen and cycling through our respiratory protocol every few hours to help keep his airway clear and open. We use a nebulizer and albuterol to open his airway, cough assist machine to send air deep into his lungs, and his shaky vest to break apart any stubborn lung gunk.

I am so so so thankful for the many supplies we have at the house to avoid hospital stays! This would have been a hospital stay had we not had the equipment on hand to keep him safe and comfortable.

Malachi is also gulping air more than normal and his seizures have increased and he requires lots and lots of venting (releasing the air in his belly through his g-tube). We are camping out in the living room this week to keep us close to equipment.

Prior to all this chaos we did have some fun family time!

The boys had a visit from our farm friends, who recently got a second sloth! This sweet baby girl is just four months old and as cute as can be.

The boys also got to do a little fishing.

Malachi genuinely loves fishing (despite his photo)! We cast out the line and then hand over hand help him reel it in. Malachi will “jig” the line as we reel it in to tempt the fish and is so focused and proud when he catches one.

I have been feeling so many emotions lately. If I had to pick just one it would be “weary”. There are times within this calling that a weariness creeps into my bones and discouragement comes. And this has been a season of weariness. Anyone else feeling that today???

I look to my left and right (admittedly dangerous step #1) and see others that are seemingly able to balance their lives, priorities, marriages, and friendships.

When I look within a 24 hour chunk of our day I am spending a large majority of that in my caretaker role of addressing seizures, managing feeds and medications, and trying to sneak in some normal parenting moments and normal marriage moments. I am incredibly thankful to have a husband that loves the Lord, is filled with grace, and is willing to run this race alongside of me. The scraps that I have left to offer friends are not enough to do friendship “right” or well.

In a world where I am not, and will never be, good enough at any of these roles, I am thankful that HE is enough. I cannot look at a 24 hours chunk and not see the many ways He was come alongside me and strengthened me. I am thankful for a God who sees me and shares His grace with me…even though I will forever be undeserving.

This season of weariness is not hidden from God and I believe it serves a Kingdom purpose, even if I can’t directly see it.

I read something this week that reminded me of how thankful I am for God and His plans. I didn’t write this and I have not been able to find the author, but I really needed this reminder.

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

Moses committed murder and 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 Nineveh 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 the disciples for 40 days. On day 41, He ascended into Heaven.

Don’t give up at 40, because 41 is coming.

While it is fun to think about the day/year 41 when we get to see victory, it is also important to cherish and value the work that God does within us for the first 40, preparing our hearts for what He is about to do.

“Why do you complain, Jacob? Why do you say, Israel, ‘My way is hidden from the Lord; my cause is disregarded by my God’? Do you now know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:27-31

Sincerely,

Leah