These last two weeks have been a blend of fun, mundane, and medical.

It was Levi’s turn for a field trip with his class to the apple orchard!

Levi had a very important trip to the eye doctor last week to test and quantify the damage in his optic nerves. He did not have enough oxygen support at some point during his early weeks in the hospital and has a few areas in his brain that were damaged through that struggle. The eye doctor recognized that his optic nerves also atrophied during this oxygen deprivation but we wouldn’t know the full extent until he was old enough to sit still for a specific test. In appointments leading up to this one the doctors suspected that he was losing vision in one eye and that the other nerve was significantly impacted as well.

He was finally old enough to tackle the test this week! The ideal range for the optic nerve is 100-120, and Levi’s eyes scored a 73 and a 75. There is definitely some atrophy but this it is considered mild and not enough to cause legal blindness or major visual impairment, praise the Lord!

Levi had esotropia at birth (eye misalignment) which we corrected surgically as a baby. His right eye also has amblyopia, also known as a lazy eye, so we are monitoring the vision in that eye in case the brain decides to “shut it off” and rely only on the left eye only. His eyesight is actually pretty good considering all of the drama! His glasses have a very slight prescription in one lens but also serve as eye protection for his “good” eye.

Malachi has been dealing with some minor medical issues that I won’t go into great detail about, but he has had some rough moments over the last two weeks. Cerebral palsy affects the muscles, including the intestines, which leads to a lot of belly trouble for kids like Malachi.

But he has had lots of happy moments too. Look how long those legs are! And how much he has outgrown his wheelchair! He is still thoroughly enjoying his time at school each afternoon and it has become a bright spot in his days.

We were able to find a sweet and patient local seamstress to work with us on adapting some coats for Malachi. Getting clothes on and off easily is getting more challenging. He was very excited to get a school jacket like everyone else.

We took a quick trip to Atlanta to visit with cousins and got to watch one of them in a play. Levi was so impressed and animated, loving every minute of it. It was a hard day for Malachi but he did enjoy listening to the show. He has started a new pattern of only sleeping every other night and is so sleepy by the end of the second day.

He perked up in time to paint some pumpkins with some church friends.

Levi picked some pretty flowers for mom. He has been very intentional lately about finding ways to do things for others and it has touched my heart so much.

And finally, we got to hang out with some of our farm friends at the Holy Ghost Wiener Roast! Each year the owners open their farm to the community and sponsor the entire event for free…admission, food, inflatable, games, and more as a way to steward the many gifts God has given them.

This week we have some pretty big appointments. The kids and I will travel to Nashville to meet with the surgeons about Malachi’s hips, feet, and spine. I suspect we are going to hear some hard news so we could use a lot of prayers for safety and for wisdom.

In the medical mom world there is always a list of things lingering in the background of our life, full of things I can easily pick and choose to worry about. Many of our diagnoses can’t be cured by doctors or completely resolved with medications and surgeries, so even when they aren’t a current issue they are still on the bench just waiting for their chance to make themselves known in the game again.

That requires me being vigilant, acknowledging their presence and watching for signs of new issues. But also not letting the worry consume me. And boy is that balance I often fail to find.

In Luke 9 we read: “And He sent them out to proclaim the kingdom of God and to perform healing. And He said to them, ‘Take nothing for your journey, neither a staff, nor a bag, nor bread, nor money; and do not even have two tunics apiece.’”

My sin nature is to be a control freak. To be able to come up with a solution for every problem and be prepared for every emergency, both physically and mentally.

My sin nature is to rely completely on myself…extreme in dependence. It is a coping mechanism I have unintentionally developed due to so many others letting me down in the past.

But walking with God and doing His will is not something we can ever do on our own. A Spirit led life requires complete and total reliance on Him. It requires measures of humility and submission that don’t come naturally.

Jesus’ command to the disciples allowed their faith to grow legs and trust that when you walk in the paths He asks you to walk that He will provide the things you need for that journey.

Even though I know this and understand this I still sometimes foolishly forget. And I spend my energy prepping my bags with extra bread, some spare change, and a second tunic instead of trusting in God to be present and active every step of that journey.

Tonight I heard a song I hadn’t listened to in quite awhile called
“Make Room” and the lyrics hit me a bit differently as I struggle accepting the one tunic expectation from the Lord.

Here is where I lay it down, every burden every crown

This is my surrender

Here is where I lay it down, every lie and every doubt

This is my surrender

So this week I am working on surrender. Please pray for our family as we navigate uncharted waters.

Much love,

Leah

Tonight we are wrapping up our fall break and begrudgingly getting ready for routines again.

Malachi has been getting a lot of social time in and boy does he now crave it! He is always so happy to head to school each day and is just as excited when we have soccer games in the evening. I have really enjoyed watching him making more of an effort to communicate with people he isn’t as familiar with.

Levi also finds his happy place at soccer games, floating from the soccer girls to the fans, making friends and creating laughter. One of the parents snapped this photo of him joining the team for a pre-game prayer.

One game this week he was playing with a girl that (according to him) wasn’t being kind. He came to tell me about it and I told him to find someone else to play with. He said “Mom, I think I will go be Jesus to her.” Then marched off on a mission. I smiled, then watched the encounter to see how it would go,

Malachi had his first field trip for the year at the pumpkin patch with friends. He had a hard night and was running on just a few hours to sleep. He tried his very best to have fun, and did enjoy a few hours but by lunchtime he signed that he was ready to go home. I really enjoyed getting to see him around his classmates and see all the kindness and inclusion taking place. They were very aware of where he was at all times, making efforts to include him in all the fun things.

We had plans on paper for a fun filled fall break week but as Malachi’s sleep patterns started to fade so did our plans. We did get to have a few adventures near the end of the week!

On Saturday we took a quick day trip to visit the Knoxville Zoo. I was more focused on family time than taking photos so I don’t have too many fun ones to share! And we are in that phase of 6 year old photo taking, where every single smile looks like I am behind the camera threatening him…I assure you I am not haha!

We also got the chance to visit with a sweet college friend and her family at our favorite farm! She and her family booked a stay there and texted to see if we could stop by for a visit. We are always so happy when others get to enter “our world” if that makes sense. We already know accessibility options and it makes planning so much easier.

In between the fun adventures we squeezed in several doctor appointments, therapies, and medical phone calls.

Jake and I are reading through the Bible this year doing The Bible Recap plan. We just finished the Old Testament and are headed into the New Testament! This particular plan has chunked a lot of the “synoptic” (same) gospels together so you get to read the same account/story written by several different perspectives. Sometimes they sound a lot alike and sometimes there are pretty big details added or omitted.

I have read these gospels so many times in my life, but I continue to be amazed at how many small things I have missed! Case in point…did you know that Jesus’ earthy paternal grandfather was named Jacob? I don’t know how I missed that all these years.

Anyway…

In Luke 2 there is a verse that has resonated with me since Malachi’s birth.

“But Mary treasured all these things, pondering them in her heart.” (Verse 19)

The shepherds had a visit from an angel telling them about the birth of Christ and where to find the child. That angel was joined by a host of angels praising God and giving Him the glory. The shepherds went straight to Bethlehem to find the baby and shared with Mary what the angels had said and that is what she “treasured” and “pondered”.

I have always been a little confused by this, as Mary herself had been visited by an angel and had already been told that she was favored and would birth Son of God! She even sang a song about it in Luke 1. So why was she cherishing these affirming words from strangers so much? Shouldn’t God’s promises the first time be enough?

And while I could sit back and pretend to make an argument about how weak her faith must have been or how she maybe didn’t truly believe…the truth is that I see myself and my faith a whole lot in Mary.

When I read the Word I see the providence of God play out again and again and again. I see the miraculous, the powerful, the phenomenal. I see God’s plan being played out exactly as He intended it. I see prophecies come true and faith ignite in so many different characters.

I KNOW the truth in a cognitive sense. But sometimes my heart doesn’t follow my head and doubt creeps in with discouragement close on its heels.

I told Jake yesterday that my faith is tired. I don’t doubt who God is and I am not angry with Him. But I am just so tired.

And when I look at Mary I wonder if she sometimes experienced the same weariness. The calling that she was given likely came with a lot of ridicule as an unwed mother. A lot of uncertainty, giving birth to the Son of God in a stable. I suspect that Mary’s calling was a lot harder than she ever imagined it would be when the angel Gabriel made that first visit to her.

I am in rambling mode right now, trying to decipher why I typed all that I did just now.

But I think the encouragement for me this week is that God is the God who sees me (El Roi). And I believe that God knew that Mary needed those precious words from the shepherds in that very moment to remind her that He is good and very much still at work.

And tonight I find myself thankful for a God that sees us in our weakest moments and gives His presence in abundance. I am thankful that He gives us moments to treasure and ponder…moments that remind us of our encounters and conversations with Him. What a good God He is!

Much love,

Leah