I thought it might be fun to start this blog with a sweet video of Malachi’s laughter. He was listening to one of his toy cars wind up and spin its wheels. He has been in such good spirits since we changed him medication back to the original one (more on that in a minute)!
The start of this week was a rough one for our little family as we continued to try to make the new stomach med work. As each day passed, he struggled more with the pain and discomfort due to stomach acid. He started having larger and more frequent seizures and just couldn’t get comfortable at night. He was waking up every 45 minutes to an hour, usually due to a seizure. It didn’t take more than 24 hours of that nonsense to push us to start the phone calls to insurance.
But I am very happy to report that on Wednesday we were able to make enough of a case with insurance and his GI doc that they have approved him for his old med for another year. That is GREAT news. Jake and I could see a difference in Malachi within 15 minutes of being back on his old med. He is back to sleeping a little better at night. Our current routine is that he will sleep a four hour stretch, stay up for 2 hours, then lay back down for another hour and a half. On days that I just can’t seem to function I then make him lay in the bed with me where sometimes he will close his eyes for another 45 minutes. I can typically function on anything over 6 hours but over 7 is a real treat!
We are continuing to work with Malachi on using key words to communicate, and have been really working on “up” when he wants to be picked up. He is doing so well! I caught it on video to share with you:
We have been continuing to give Malachi a small dose of hemp oil each day, and as I may have mentioned before, one of the biggest impacts we are seeing is in his hands. Prior to the oil, Malachi was always tight fisted and would tuck his thumbs in his fist. This was something his brain was telling his hand muscles to do, and as you can imagine after years of that his little hand muscles have grown accustomed to the position. But with the oil we are getting to see those sweet little chubby hands and I am obsessed with looking at them. This week as I caught myself becoming fascinated with them again I thought to myself that this was one of those “little things” that parents of typical kids take for granted. Who knew that one day I would be so excited to see the palm of my son’s hand!!
As I stared at that hand I found myself marveling about the greatness of our God and how intricately he designed each of us.
I heard a quote this week: “You can complain that the roses have thorns, or rejoice that the thorns have roses.” It was such a profound thought to me, and reminded me that perspective can change your attitude toward any situation. Our lives with consist of roses with plenty of thorns also in the mix. We can choose to focus on the things that bring us suffering, or we can focus on the beauty that can also be found in those moments. Look for the beauty. Focus on things worthy of praise, as the Bible calls us to do.
In other Carroll news, tomorrow our contractor will be digging out our future basement! This is a big step, and we can’t wait to see the visual that it will bring. Up to this point we have been dealing with appraisers, surveyors, lots and lots of permits and paperwork, and all kinds of boring and tedious steps. But now we are about to begin the visible changes and we are so pumped!
Jake and I are also looking forward to this week as it will wrap up our indoor soccer league at the church! While we love the league and the amount of money it brings in towards fundraising for youth to go to camp, it is very time consuming. Jake and I personally coordinate the schedules, ref each game, and each play on a team. The championship game will take place tomorrow evening and we will be able to mentally drop another thing from the list.
We are still coaching the boy’s soccer team this year, and the games will begin this week! So we are essentially trading one busy schedule for another but at least the two will no longer be running simultaneously. The last few Thursdays have had us running like madmen, coaching the boys from 3-5, then having a quick picnic dinner out of the car before the indoor league games began from 5:30-9. Those were some long nights!
Jake and I were laying in bed last Thursday talking about our crazy day and whether or not it was all worth it. As we pondered the question, I had a thought…in those 6 hours, Jake and I personally spoke to/interacted with over 100 people. While we may not have been able to legally talk on the soccer field about God, we were able to demonstrate God’s love through kindness towards each player. And before each of those indoor games, either Jake or myself was able to pray a blessing over the game and invite each person there to worship with us at church on Sunday.
As I mentioned this to Jake we were both able to come to the conclusion our exhaustion and weariness was absolutely worth it, as it allowed us to give of ourselves for God. Someone in church this morning said: “There are times in life that living for God will make you uncomfortable, as it requires us to give of ourselves to others. If we aren’t sometimes experiencing that discomfort, we might want to examine our selflessness.”
I want to challenge you to find a way to give of yourself this week. Volunteer at your church, spend time with a lonely person, call a relative who may just need to know someone is thinking about them. Think of a family you know with young children and offer the babysit so the parents can have a date night.Find a way to get $20 anonymously in the hand of someone who truly needs it. Find a way to bless someone else. Those acts that sometimes bring about feelings of discomfort are the very things we should be reaching out and doing for others.
I thought I would end this entry with one more laughter video from our sweet boy…enjoy!
Much love and God bless,
Jake, Leah, and Malachi