This week was scorching hot here in east Tennessee and Malachi does not tolerate the heat well, especially with heat indexes above 105. The best way to describe it is that he ”melts”, unable to engage any parts of his body. If he gets too uncomfortable he starts seizing so we typically try to keep him as cool as possible.
Horse therapy on Monday was borderline too warm but we thought we would give it a shot. It was pony painting day and Malachi melted but was able to use his eyes to communicate by looking at the therapist when she got to the color he wanted and looking away when she offered ones he did not want.
Levi also painted during his session and thought it was great fun! Levi has some sensory issues that were challenged by the session, particularly when his clothing got wet while washing the horse. He goes into a panic mode and can’t focus on anything else.
It brings me so much joy to see how each of them have changed in the last year. Levi was barely able to chew foods, and was still unable to swallow most of them. He would spit them out in a napkin after chewing them up. He was completely g-tube dependent. If I sat down and listed all the things he eats in a single day now you wouldn’t believe it. Just this week he literally jumped up and down when I told him I bought spinach dip for him, and he then ate it by the spoonful. I couldn’t watch haha. I love spinach dip but seeing it being shoveled into his mouth was a bit much.
And Malachi’s personality continues to grow with him. He is getting older and acting so much like the 9 year old that he is. It has been a good parenting challenge to try to find ways to grow our routines with him. This week we started reading a chapter book each night after our Bible story and he has been hanging onto every word. In fact, he got so immersed into one scene that my over-animated reading of one line set him into a pretty big seizure. I am learning to watch his engagement closely so I don’t spark one of those again.
Jake and I finally had a chance to celebrate our anniversary and went to Chattanooga for lunch and a trip to Dave and Busters arcade. I had never been there before but Jake and I’s courtship was centered around some friendly competition so it seemed like a fitting place for a few games of ski ball. The boys joined us of course, so I tried to prep them a bit for the experience but failed. Both of them were extremely overwhelmed when we walked in with all the lights and sounds. Levi asked if we could leave and Malachi just shut his eyes tightly and shut down.
We almost turned around and walked straight back out but we decided to play just a quick game of ski ball since we had already unloaded the crew (a task with the wheelchair). I watched Malachi very closely to make sure we weren’t inducing any seizures with the lights but after a few minutes his eyes were wide with excitement. Levi also started to loosen up a bit after he got the chance to play some ski ball.
They had several ride on games so we let them take turns sitting on them and pretending to play. They rode motorcycles, blasted dinosaurs before they ate us, and threw basketballs.
We headed home and later that evening Levi said ”Mom, I really liked the game place.” I asked him if he would want to ever go back and before Levi could answer Malachi nearly fell out his chair trying to sign YES YES YES. I guess a repeat trip is in our future.
It was haircut week, and the boys were way overdue. I couldn’t help but giggle at the before and after photos.
Tonight we took Jake for some Father’s Day ice cream. We each got a different flavor and let Malachi taste all of them and vote for his favorite. He loved the game and declared strawberry as the winner, much to our surprise. He is a chocolate loving boy. His smile melts my heart.
This week I ended up dealing with some pretty big surprise emotions.
Early on in our journey with Malachi our circles crossed with another local family with an adult son with medical complexities. We have watched this family very closely over the last 9 years, and even got some construction advice from the parents when we were making plans to build our home.
Tripp was 29 years old and an amazing young man. He loved his momma, his girlfriend, and his church. And he loves Jesus. Tripp could communicate through technological devices and it was through his life that we were encouraged to try to help Malachi find his voice.
Over the last few weeks Tripp’s health declined and on Tuesday he walked through those heavenly gates and ran into the arms of Jesus.
The transition between Tripp’s decline and his passing affected Jake and I in a profound way. I was hit with waves of anticipatory grief, feeling the situation on a very relatable and personal level for his parents. Understanding the pull between heaven and earth, desperately wanting to live life on earth with your child but also desperately wanting them to experience the freedom heaven holds.
I have shared with you before that I don’t like unknowns. I will skip to the end of a book and read the final chapter so I can enjoy it’s pages knowing how it will end. The inability to skip to the final chapter is something I really struggle with.
In Colossians 1:9-14 we read:
For this reason, since the day we heard about you, we have not stopped praying for you. We continually ask God to fill you with the knowledge of his will through all the wisdom and understanding that the Spirit gives, so that you may live a life worthy of the Lord and please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.
There are so many important truths that jumped off the page at me as I read these words this week. The first truth is the reminder to me that we aren’t capable of understanding the ways of God. We are only privy to the pieces that the Spirit of God reveals to us along the journey. We waste so much effort trying to make sense of things that God doesn’t intend to reveal to us quite yet.
The second truth is the reminder that we are simply called to live a life worthy of the Lord and please Him in every way. God’s expectations of us are pretty simple if you really think about it. The things it continues to list, like bearing fruit, growing in the knowledge of God, being strengthened…these are all things that come naturally when we focus on living a life that pleases God. They are byproducts of a God centered life.
I love the words in this verse and how purposeful they are. Particularly the verse: being strengthened with all power according to his glorious might so that you may have great endurance and patience.
There is such a huge truth hidden in this verse as it reminds us that walking a life aimed at pleasing God will absolutely create weariness within us. This weariness isn’t a sign of weakness. Walking a life of obedience to Christ requires endurance and patience, and often we have to take time to rest in Him.
When I look at Malachi, and when I think about the life of Tripp, I can’t help but see how well they live out the words in this verse: endurance and patience. And knowing that God continues to strengthen as we develop those verbs is such a gift from the Father.
The final truth I can’t help but focus on in these verses is: For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves.
Tripp has been rescued and brought into the kingdom of the Son. And God knows the date and time of Malachi’s rescue, and He already knows the date of mine.
When we re-define death as a rescue mission you can’t help but see the love of the Father in even those dark moments.
God asks that as we wait on our rescue that we continue to cultivate patience and endurance, living a life of bearing fruit and growing in knowledge of God. And Tripp did just that, and did so in a magnificent way.
Please be in prayer this week over Tripp’s family and close friends as they process this loss in their lives. Tripp’s beautifully written obituary can be read here: https://www.chattanoogan.com/2022/6/16/451071/Hathcock-Lindsay-Tripp-Cleveland.aspx