Oh Malachi…what a goofy boy he has been this week. We are seeing so many behaviors from him lately that remind us that he is a four year old toddler haha! He is going through a defiant streak which is admittedly entertaining to both Jake and I.

 

When we put him in his car seat he will pull one arm under the straps and grab the chest clip with the other hand to prevent us from buckling him in. While we struggle with his little hands he just grins and giggles that he is winning the game. In his tomato seat at the house he will fling his head so far to the side that he is dangling off the seat and will look up at us, grinning from ear to ear, enjoying that we are upside down. We will fix his head and he will do it again in under ten seconds. This morning he was having a blast opening and shutting the bathroom cabinet as we scrambled to get ready.

His little mind is working in overdrive which is so encouraging to see. He is continually trying to figure out how to get mommy and daddy’s attention, or how to get into something. He is our little Dennis the Menace!

He has been blowing us away with his cognitive abilities this week. My brother rented a cabin in the city of Helen, GA and invited us to join them for the weekend. We decided to make the trip up Friday afternoon, stay the night, and return home on Saturday. Malachi and I were up that Friday morning very early and he was just settling back down around 6:00 as Jake was getting ready to leave for work. As he walked out the door he told Malachi that when he got home he would take him on a big adventure.

Malachi drifted off to sleep and when he woke back up the first thing he said was “dad”. I went in and picked him up and that little stinker called for his daddy for the next 30 minutes! He was ready to go on his adventure then and there.

Speaking of waking up, Malachi has been waking up so well lately. For the last several years, Malachi would typically wake up and immediately have a seizure. We would have to run into his room and scoop him up before he vomited to prevent him from choking on it. But lately he has been waking up and just looking around for a minute or so, then he will yell for one of us. While we were at the cabin this weekend, he woke up, looked around, and got very scared and started to cry. It sounds odd, but seeing such a normal response to waking up in an unfamiliar place was very exciting for me as it is just another indicator that his eyesight is improving.

Here is a video from our weekend with family; Malachi LOVES interacting with kids and you can see him reaching out for his cousin Weston in this clip:

Our week was a little out of the norm as Wednesday there was a prediction for terrible storms coming through our area. As a precaution, all the area schools closed for the day so we had a surprise day with dad. We cancelled his therapy appointments that day to prevent having to drive when the storms were predicted to hit. Fortunately they lessened over night and we only got rain. In addition to big adventures this weekend, Malachi got to enjoy a play date at the park with some friends, horse back therapy, and lots of errand running with mom. We also had the first soccer game for our new boy’s team at the high school. Malachi loves to listen to mom and dad coach…especially when we holler loudly at the boys at the other side of the field.

We officially have a basement dug out in the new house, and we have been so fascinated with stopping by the property to see the progress. Seeing a large rectangle in the ground makes it all feel more real.

This week I met with the electrician and explained to him that when it came time to run the wiring that we needed to meet and discuss some big modifications. We are trying to make sure we make this house as Malachi friendly as possible for now and for future health concerns. For example, we will need high outlets in his bedroom to charge ceiling track systems when he gets too big for me to lift. As I talked to this electrician he told me that he has a 13 year old special needs grandson who is very also has several medical needs. He was telling me all the ideas he had for Malachi’s room to make it more suitable for him in the long run, and some of the ideas were things we had not even thought of (like electrical needs if he were ever to need to be on a ventilator).

It is just so neat to me how God has coordinated just the right people into just the right places to help us with this project. God is so good.

I had a rough moment early this week in Malachi’s music class that really came out of the blue! They were doing an activity that involved walking across something plastic seats, something Malachi obviously could not participate in. Anytime this happens in class I just scoot us out of the way and we listen to the other kids laugh. But this time I watched Malachi staring over at the kids, trying so hard to watch them.

He had never done this before and I felt like I got punched in the stomach. It was almost as if he understood that he was being left out and for a moment I wondered if all this time I have been underestimating how much he truly understands. As I watched his little eyes try to find his friends and follow their voices I started to get emotional…my heart hurt that he even has to experience feeling left out…and I started doubting whether or not I should be taking him to things like this where I know he will physically not be able to participate like the other kids.

It was such a painful moment filled with sadness as I thought about Malachi’s future and guilt for setting him up for exclusion. The more I have thought about it over the last week the more I realize the the benefits of his music class outweigh the negatives, but it has been a reminder to me to assume that Malachi is completely aware of what is going on and to do my best to protect his little heart.

My, oh my, how far he has come. This photo was taken four years ago. I remember that I just happened to be in the NICU when they were going to change out his breathing tube. They told me to get my camera ready and that I would have 3 seconds to snap a photo. This was the first time I got to see his whole face and my heart was bursting with love for him. I remember thinking that he looked just like his daddy. At this point, Malachi was about 4 weeks old (so should have been 28 weeks gestation). To get some perspective, look at the thumbs of the adults helping with equipment. His little head could fit in the palm of my hand! Unbelievable.

So a decent week for the Carroll clan! Jake and I are so busy during the week that we do our best to reserve weekends for rest and relaxation. This weekend we didn’t abide by our rule and I can tell you that we are both feeling the busy-ness from the week pretty intensely. We are simply exhausted.

We are continuing our study on the major and minor prophets with the youth group on Wednesday nights and last week I covered Isaiah. As I read through the book I tried to organize what his main messages were, which is a daunting task as the book is very large! But one of the themes was Isaiah chastising the people about their view of the Sabbath. The 10 commandments tells us “Remember the Sabbath day by keeping it holy.” The people Isaiah was referencing were technically observing the Sabbath but it had become an empty ritual for them…just something they could check off the list.

As I read about that I couldn’t help but think about my personal walk with God and recognize the many ways that I have allowed my habits to become “rituals” instead of conscious efforts to connect with Christ.

When Jesus came, he fulfilled the law. Instead of us having to set aside a special day to focus on revering God, we now have access to the Father 24 hours a day, 7 days a week! Every day should be a Sabbath as we take time to focus on God and honor Him.

Sometimes I try to turn my walk with God into a checklist or sorts…prayer: check, Bible reading: check, church on Sunday: check. But I have to remind myself that God isn’t focused on our checklists but rather he is focused on our relationship. I am going to try to make sure each day this week is a Sabbath to God and that I am taking time out of my busy schedule to honor Him.

Thank you for listening to me ramble each week. And thank you for continuing to lift Malachi up in prayer. He is such a special child, and in those eyes I see a brain that is healing. There is a children’s Sunday School song that says:

He’s still working on me to make me what I ought to be.
It took Him just a week to make the moon and stars,
The sun and the earth and Jupiter and Mars.
How loving and patient He must be, He’s still working on me.

I know it sounds silly, but when I look at Malachi I can’t help but see that truth in those words. He is still working on my Malachi, and we are so very blessed by that thought.

With love,

Jake, Leah, and Malachi