Deacon Jake

Let’s start with a funny game. What is wrong with this picture? I am pretty confident you will be able to spot it, but just in case I will put the answer in the P.S. comments at the bottom.

img_1422-1

There are times when my heart feels so full of love and joy, and tonight is one of those nights. As I look at each of my uniquely special boys my heart flutters with the honor of getting to do life with them.

img_1502

Malachi has the most forgiving heart. This week he and I have been very frustrated with each other. When he was younger and I would get frustrated I could yell out and release some of that built up anger and Malachi would laugh at my outburst. Now when I yell out in frustration he yells out back angrily and makes sure I know he is mad too. But his sweet little heart can’t stay mad long.

Malachi has a streak of silliness in him that is coming out more frequently these days. He loves to make people laugh and desperately wants to connect with people around him. He is really enjoying school and the independence it gives him away from mom and little brother. He has been able to do school 3-4 days a week from 9:45-2:30 each day! That is a huge improvement from the 2-3 hour chunks we had to do last year without his feeding tube.

img_1591-1

His seizures are down to about two a day and tomorrow we will be increasing his CBD oil to the max dose we are willing to try right now in an effort to take him down to one seizure or less per day.

img_1561-1

Levi has transformed his personality in an unbelievable way over the last 12 months. This time last year he would cry if a stranger looked at him, let alone spoke to him. Now he wants to lead them by the hand all around the grocery store. He is extremely intelligent and has such an awareness of things. He is investigative and won’t move on from something until he has mastered it. He loves to help and can now complete two step instructions, which I take advantage of often when I am trying to take care of Malachi and need a second set of hands.

img_1638-1

And Levi loves his brother so fiercely. To him, Malachi is simply Malachi. He doesn’t see anything different about him. Today I looked over at lunch and they were holding hands, something Levi initiated. Whenever he walks by Malachi at the house he takes time to stop and kiss him on the head or hug him before he continues waddling by.

This is his silly face he makes when he knows he is doing something he shouldn’t do, like stand up in the moving wagon.

img_1695

He is also becoming quite the little flirt with the church girls.

img_1652

img_1324-1

This week has been a wacky one with crazy sleep schedules. On Tuesday we made the trip to the regional semi-finals game with our soccer team where we lost in a sudden death PK shootout. We didn’t get home that night until after midnight and didn’t get everyone medicated and in bed until 2am. That set their sleeping schedules into a whirlwind for the rest of the week, Malachi partying until after midnight some nights. It also seems that he is establishing his new wake up time earlier than before at 3am. I am hoping the CBD increase may help with this.

img_1672-1

Tonight was a special day for our family as Jake was ordained as a deacon in our church. Jake was honored in an ordination service this evening and it was so wonderful to see the other deacons in our congregation welcome him in and pray over him.

img_1678-1

If you aren’t familiar with the Bible and all these church terms, “deacon” means to minister and to serve. There are only about a dozen deacons in our church, and Jake has decided that this is where the Lord is calling him. Jake’s heart has been pulled in the direction of service other the last few years and I think a role like this will continue him on that path.

During the service this evening the pastor made a reference to the story of Jesus feeding the 5,000. In that story, the people have been following Jesus and the disciples and now there is a huge crowd of them. As the day wears on, Jesus recognizes their need for a meal and the disciples start to try to think of ways to feed the crowd.

One of the disciples finds a young boy that has a sack lunch with him that contains 5 loaves and two tiny fish.  And then the miracle happens…Jesus feeds the 5,000 with it!

I have heard this story so many times in my life. It is in four different books of the Bible and I have even studied it within each book with the youth. But tonight God pointed me at something fresh and new He wanted to me to see. He pointed me towards the actions of the boy.

That boy was surrounded by at least 5,000 very hungry people that day and was the only one with a sack lunch (high five to that boy’s momma!) He very easily could have taken his meager lunch around the corner and eat it quickly and quietly under a tree, making certain that his physical needs were being met. He could have done the cautious thing and given just a portion of his lunch.

But instead he willingly gave all that he had. He did so with expectation that Jesus would do something miraculous. He showed faith. He showed the heart of a servant that we are called to cultivate in our own lives.

When was the last time we willingly gave ALL that we have to Christ? We are good at giving meager portions to God, or the chunks in our lives that are leftover when we are through with what we want.

But when was the last time you carried everything up to the feet of Christ and laid it down, expecting Him to multiply what little you have to offer to impact His kingdom?

When was the last time you looked around and saw a need and saw a tiny way to possibly help meet the needs of others.

When was the last time you had the faith of that small boy? How many times has our selfishness gotten in the way of God’s work?

Christ loves to work with mold-able, willing hearts that are eager to see Him in action. Release your 100% to God, regardless of what that may look like to you. For some of us that may be time, for others resources, and others emotions. Take all that you have in those areas and give them over to God and wait patiently to see how He multiplies your meager rations.

I like to think about the smile on that little boy’s face as the disciples likely filled up his bucket to the brim with leftovers from the day. What a story that boy had to tell to his future generations.

What story of God’s goodness do you have to pass on?

Thank you for your prayers for more miracles for the boys!

Leah

P.S. Jake is a school teacher and doesn’t get dressed up often. Since tonight was a special occasion he decided to bring out his fancy shoes. When he bent down and kneeled his shoes both slipped right off of the soles!! I didn’t even know that was possible. He limped through the rest of the evening, finally breaking off in the parking lot at dinner. Time for some new dress shoes I guess haha!

 

3 thoughts on “Deacon Jake

  1. The blond curls on that little Levi are worthy of envy!
    Would you be able to share where you get your CBD oil? We have some friends who are interested in trying it for chronic pain but there are so many sources and not all reliable for quality. Thank you!

    Like

    • Hello Irina! Malachi is taking the only FDA approved prescription CBD oil. It was recently released for kids with multiple uncontrolled seizures. However, we did purchase some from Bluegrass Hemp Oil our of Kentucky and was very pleased with their testing process and quality. They are worth looking into!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s