Life is picking back up for our family, but we are still cautiously keeping the boys tucked at home as much as possible. We take turns fulfilling all of our obligations but the boys are going a little stir crazy at the house all the time. Right now between Jake and I we are leading 6 Bible studies in the evenings throughout the week and running two soccer practices! We run some of the studies in our basement and have the teens enter through the basement entrance so they don’t share air with our medical marvels.

On Saturday we went to check out a new BBQ place by the river; we saw online that they had an outdoor seating section that was isolated enough for us to feel comfortable taking the boys for an escape. We arrived right when they opened and no one was there but us, so we sat in the corner of the restaurant and enjoyed our food in the air conditioning. The boys were both pretty pumped about the adventure. It was a brief moment of normal.

 

Jake will head back to work at the beginning of August and we will adjust to a new normal. With him being in such a germ susceptible setting we will have to function at home a bit differently. He will come in from school through the basement and shower downstairs, tossing his clothing straight into the washer each day. He will also be sleeping in a different bedroom by himself to keep him from breathing on the kids all night just in case he contracts something.

In previous years if Jake started to come down with something contagious we would book a hotel and he would move out for a bit to protect the kids. But one of our quarantine projects was finishing a bedroom in the basement so he has a place to stay, which will save us some money!

Either way, it will be a big adjustment for our family as we go from 24/7 family time to Jake being exposed to the virus daily by hundreds of kids. We are still trying hard to keep our faith bigger than our fear!

We have obviously decided that Malachi will not be going to school this year, as the risks outweigh the benefits. We are still trying to make a decision about therapies for both boys.

This week Malachi and I took a day trip to Vanderbilt to meet with the spine and hip surgeons. Jake graciously made sure I had enough naps in the days leading up to the road trip so I could be alert on the road. It is only 3 hours there and 3 hours back, but when you run on fumes all the time even those short distances can get dangerous. I downloaded some new songs on my phone and turned the drive into a karaoke party, much to Malachi’s enjoyment haha.

Malachi’s spine is still at a 43 degree curve, which is only one degree more from where it was at last summer. For now it isn’t severe enough to require surgery, praise the Lord. The spine surgeon worries that a growth spurt may affect him in the negative direction but for now we are still prolonging that massive surgery.

Malachi’s x-rays are so unique. The tubing that runs down his neck and piles into his belly is his brain shunt- it takes spinal fluid out of his brain since his brain bleeds clogged the original path of the spinal fluid. It is extra long so it can grow with him as he gets taller, thus avoiding an unnecessary brain surgery to replace tubing. You can also spot a very small bright circle next to his heart. That is the metal coil we placed in his heart procedure several years ago to close his PDA.

Malachi’s hips are still dislocated and are literally as bad as they could possibly get. The tops of his femur bone have not only migrated out of their sockets but are now up above the hip entirely. You can actually feel them through his booty. Getting them back into socket is not even a reasonable option, and right now them do not seem to be causing him pain. If they start causing pain we will have to do a major operation to saw off the head of the bones but obviously that is a last resort. For now we continue to wait and watch annually with both surgeons.

I did talk with the orthopedic surgeon about Malachi’s legs turning colors when he sits in certain positions, but he said we shouldn’t worry too much about that as long as it remains positional. Malachi will also be getting new AFOs this week which will help cut down on the pressure sores he has been getting on his ankles.

Malachi absolutely loved being able to go on a trip with just mommy and no Levi. He especially liked when Levi started crying because he wasn’t allowed to go.

They sure do love each other, even though sometimes there is some serious jealousy between them. Levi has been asking to “hold” Malachi while they watch TV together.

Malachi has been swimming like a pro lately with his primary goal being to get to Levi. We have been so impressed with his swimming skills this week; I took a brief video for you:

Malachi is such an exceptional kid! I wish you all could spend a day with him- it would change your perspective so much on children with disabilities.

And little Levi sure has been a firecracker this week.

He mimics whatever he sees his daddy doing and I came out to find him settled on the couch reading daddy’s Bible and “taking notes”.

There is a verse in the Bible that God loves to bring to my mind often, and usually in a very convicting manner haha! But oh the wonderful challenge that it is for me!

Philippians 2:3-4 “Do nothing out of selfish ambition or vain conceit. Rather in humility value others above yourselves, not looking to your own interests but each of you to the interests of others.”

This verse challenges me to strive for the humility of Jesus Christ…a humility that isn’t natural or easy to do. Humility is something that I think many Christians have lost sight of in the last several months. We have morphed into an every man for himself mentality and forgotten the challenge to be DIFFERENT than the world, putting others above ourselves.

I have read so many social media posts about masks, social distancing, newly enacted rules. Arguments flare up, each side adamantly arguing their stance both unwilling to budge on their beliefs.

As Christians we have been given a perfect opportunity to live out Philippians 2 the way Christ would have. Yet for some reason we are allowing our egos override our humility. Humility does not equal weakness, nor does it make you an ignorant pushover. Instead it speaks to a self-centered world that like Christ, we are going to regard them as more valuable than ourselves. It speaks to others that we are living for God rather than our own selfish desires.

What is more important to us as Christians…living the way we want or being a mirror image of Christ, living the way He did?

Don’t let the chaos of this world change the standards God has set out for us. Instead see them as opportunities to live out the word and desires of God.

This week let’s all try to find those selfish moments in our day and replace them with the humility of Christ.

God bless,

Leah