This week Malachi had his annual appointment with the neurosurgeon. As you probably already know, Malachi was born 4 months premature and had a very traumatic birth. During his delivery he was deprived of oxygen causing his brain to start hemorrhaging on both sides. They give a grade to brain bleeds with 4 being the highest you can have, and Malachi was given a grade 4 brain bleed on both sides of his brain.
This significant level of brain damage can cause a host of issues, but one of them that can often happen alongside of the bleed is hydrocephalus. In very basic terms this is when CSF (cerebral spinal fluid) can get into the ventricles (a gap on each side) inside of the brain but all the exits for the CSF are blocked. So the brain begins to fill with the trapped CSF leading to a larger than normal head and lots of issues.
When Malachi was 4 months old he had a VP shunt placed into his brain to give an exit to the CSF. The shunt is under his scalp behind his left ear and about 3 inches long. It has a tube that diverts the fluid down into his abdomen where it can be absorbed by the body.
Statistically these machines will fail. When they do it will present with lots of symptoms that mirror other illnesses so it is something we watch very closely. In fact, most of the times we end up in the emergency room it is one of the first things they like to rule out with a CT scan. If Malachi’s shunt were to ever stop functioning it would be an emergency situation, likely requiring a surgery.
They can adjust the machine using a magnet outside of the scalp instead of physically having to touch it which is really cool technology.
Malachi has had his for over 9 years now and we have been very blessed to never have a malfunction! We still meet with the neurosurgeon at least once a year to make sure we are all on the same page and we periodically do imaging to make sure things are still flowing as they should.
These appointments are less than 5 minutes long (not complaining) but it takes an hour to drive there and an hour to drive back (okay, complaining a bit). So I usually try to pair these with something fun for the kids.
The zoo is about a mile from the hospital, and Malachi loves jaguars. We created a narrative years ago with him that these particular jaguars must remember him because they come over to the glass when Malachi visits. This was all fun and games until a few years ago when the jaguars were asleep. They didn’t come to the glass and Malachi cried his little eyes out.
So we changed the narrative to include all the possible disappointments we might face. On the way to the zoo I rolled down the van windows and told the boys to yell loudly to make sure the jaguars knew we were coming. Much to my surprise Malachi started shouting louder than ever before. He shouted from that point…all the way into the zoo…and literally all the way to the jaguars. And by golly they were ready for him, immediately coming over to the glass.
Malachi was so proud. And I was so relieved. At our zoo I can get Malachi out of his chair and get him right up against the glass where he can track the jaguars with his very limited eyesight. We spent a solid 20 minutes with them before we packed up and headed out.
We spent almost every evening this week outside, trying to enjoy the cooler evenings before the summer heat hits. And we have the mosquito bites to prove it!
We played on the playground, swinging high enough to give momma a scare.
We swam in the pool- and you can tell from these photos exactly how Malachi felt about the experience.
Watching Levi swim stirs my heart so much. I can’t help but think back to those pivotal moments in the hospital, talking to surgeons about the need for a trach. Swimming like this would not have been possible for Levi with that device. Each and every time he splashed in that water I can’t help but feel an overwhelming sense of thankfulness to God for helping Levi live a trach free life.
Jake has one week left for the school year and our summer will officially kick off. We are back and forth to the hospital over the next two weeks to do our check ins with the epileptologist and the pulmonologist. But life is about to calm down to a wonderful crawl for our family.
Each week we meet with our youth group at least once for Bible study, relying on God to guide us to what He desires for them to hear. Some weeks I will prepare a lesson only to have God divert me a different direction.
This was one of those week where God took me from 2 Timothy to Hebrews 11 exactly one hour before class began. As I read the chapter so many things jumped off the page at me, but I could’t help but focus in on this chunk of scripture.
“All these died in faith, without receiving the promises, but having seen them and having welcomed them from a distance, and having confessed that they were strangers and exiles on the earth. For those who say such things make it clear that they are seeking a country of their own. And indeed if they had been thinking of that country from which they went out, they would have had opportunity to return. But as it is, they desire a better country, that is, a heavenly one. Therefore God is not ashamed to be called their God; for He has prepared a city for them.”
I don’t know that I truly understood our roles as dual-citizens, citizens of the world but also citizens of heaven, until after I had Malachi. I didn’t fully understand the longing for heaven that burns within my soul now.
As I have grown in my faith heaven is no longer an end destination, but it IS LIFE. Our walk on this earth is simply a prologue to a beautiful, heavenly story.
But as I read the scripture passage above so many truths popped off the page at me.
”Having confessed that they were strangers and exiles on the earth.”
What beautiful conviction is held in these verses. The balance of living in this world but not conforming to it (Romans 12:2) should give us the feeling that we are strangers and exiles. Our movement with God should be so fluid that we are living each step according to His will instead of our own, even when that means we don’t get the chance to settle.
We are called to live as citizens of heaven while we continue to walk as citizens of the world. What a sharpening challenge for each of us to focus on. As Christians we are all pilgrims on a journey, much like those spiritual giants we read about in Hebrews 11. We aren’t driven by tangible rewards, but rather we are driven by a hope that burns within us.
C.S. Lewis states in Mere Christianity, “If you read history you will find that the Christians who did most for the present world were just those who thought most of the next”.
We can complete a whole lot of tasks on earth, but if we look honestly at the things we are putting our time and energy into can we point to eternal value in them?
“But as it is, they desire a better country, that is, a heavenly one.”
Oh how I desire a better country. For myself and my children. But that desire has to simultaneously burn alongside this earthly journey God has placed us on.
Ephesians 2:10 ”For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them.”
Please continue to pray over our family, and specifically for continued wisdom over medical decisions with our boys. With major surgeon talks on the July horizon for both boys we have to start mentally preparing for some of the decisions we will have to make. And please pray for sleep. Malachi has been staying up until 3am and my mind is mush.