The Carroll summer fun has continued this week with all sorts of adventures.

We tackled lots of appointments and therapies with both of the boys, getting back into the swing of things.

Malachi went to Vacation Bible School every night this week and had a blast with his friends. Of course his favorite thing seemed to be the recreation part. He had never played kickball before so adding in the concept of running somewhere after kicking the ball intrigued him. He scored a home run and when everyone cheered he was full of giggles. He was so joyful so I took a short video to share with you:

Malachi is a very routine oriented kid, and while he doesn’t mind a change in the plans, it takes him a bit to get into the groove of new adventures. After the first night of VBS I asked him if he wanted to go back the next night and he signed YES.

I asked him if baby Levi could come (who is technically under the age limit so Jake would have to come with him) and he signed NO. We asked him each night and finally on Thursday he gave Levi the green light to join us.

We try very hard to respect Malachi when he has an opinion on something. We always want him to know that we are listening and hearing the things he is trying to say, even though he cannot speak. Obviously if it crosses the line into being mean we won’t allow it, but we recognize his need to be independent from Levi every now and then.

We have actually been splitting the boys a lot lately and it is so interesting to see how their behavior changes when the other one is not around. Malachi absolutely cherishes the one on one time with Jake or I- he is very snuggly and sweet. And Levi craves our undivided attention when he is alone with one of us.

Levi’s nose started running this week and we noticed him getting a bit more clumsy than normal (hence the bruise on his head). Those have been the classic signs of an impending ear infection so we watched and waited. Last night the pain hit around 2am and he woke up screaming. This time he was tugging at both of his ears so we went to the walk in clinic this morning and had it confirmed- double ear infection. This is his second infection in 3 weeks so we are going to have to have a conversation with his pediatrician about putting tubes in his ears.

Like I have said before, we have had a hard time getting walk in clinics to treat Levi for his ear infections. EVERY SINGLE ONE has hit on a Saturday night leaving us no other option but the emergency room where lots of germs breed. Now that he is off oxygen we have a bit more luck sneaking him in before they ask about his medical history and get nervous. This go around we made it to the final minute and the doctor asked if we had ever seen an ENT…busted. I had to explain that he has had nearly two dozen airway procedures in his 18 months of life and that we have several ENTs on speed dial.

Levi started his new antibiotic and crashed this afternoon. We are praying for a restful evening for him.

Today we had a celebration at church, complete with a petting zoo! This was right up Malachi’s alley and I couldn’t wait to take him out there to feel some of the animals. Unfortunately two of the things he hates the most is sunshine and heat so he shut down a bit, but he came out of his funk enough to pet and hold a few of them. I snapped a few pictures to share with you.

Medicated Levi and Jake stopped by and got to snuggle a bit. We have been working on “gentle hands” and thankfully he did great with that concept.

We are gearing up to leave on Saturday to take our youth group to camp in SC. Jake will be staying with the kids at camp (27 kids and chaperones) and the boys and I will be staying at a rental house down the road and traveling back and forth as needed. This year some friends at church who happen to be nurses are going to join me to help with the boys. If you remember the rat poop fiasco from last year you will recognize how happy having help makes me.

I have struggled a bit this week with triggers. Things that mentally take me off into the past as they remind me of a disappointment I have had to process. This week it was the gray bathrobe. I caught a glimpse of it in the bathroom mirror, hanging uselessly on the towel rack and it stirred up so much sadness.

We longed for Levi’s pregnancy to last longer than Malachi’s 24 weeks. I cautiously and optimistically put off all preparations for as long as I could stand it, wanting to make sure I wasn’t “counting my chickens before they hatched”.

The closer we inched to the goal 36 week mark (for medical reasons I couldn’t carry past 36 weeks or go into labor) the bolder I got with my imagination. I imagined bringing home baby Levi after a normal, uneventful 3 day stay. I imagined being able to breastfeed and meet my sons needs without medical intervention.

And that is when I did it- I allowed my hopes and dreams to morph into a trip to Target. I walked the aisles until I found the gray robe. It was going to be the robe I kept close so I could throw it over my pajamas when friends came by for a visit. It was going to be the robe that I packed into my hospital bag, ready to be used in the hospital bed as I breastfed my son for the first time.

I had big dreams for that robe.

This week it almost felt as if its presence was taunting me from its reflection and I started to feel that seed of bitterness starting to sprout deep down in my belly. I am beginning to think that disappointment will forever be my kryptonite…it will be the one thing that I can never get rid of alone. It will be one of the biggest struggles that keeps me connected to the Vine.

The robe sent me into the rabbit hole of Levi’s birth and the emotions of that day. Jake and I spent some time talking through it, which is something we don’t often revisit. Our hearts intertwined in their hurt during that conversation and in the end it made us both feel a bit better.

But the reality is that my life and your life is going to be plagued with disappointment. It will be riddled with bath robe triggers and reminders of past failures.

But the thing I often forget is that the devil is the author of those moments..they are not of God.

1 Peter 5 says “And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.”

Day by day I see the ways that God is restoring our family. Through each moment and period of suffering he builds our family stronger, firmer, and more steadfast. I have to choose to always see that truth.

Maybe you are in the middle of your restoration, or maybe you are like me and still in prayer for the day it comes. Wherever you may be in your life, believe with me that God will make us stronger, firmer, and steadfast into looking to Him rather than our circumstances.

I am so tired my eyes are starting to cross so I am going to wrap this up. Please keep my family in your prayers this week as we head to youth camp with our teenagers! And please pray that Levi’s ear infection responds well to his antibiotic.

 

Much love,

Leah

 

 

 

 

 

 

 

 

 

 

This seems like an odd and over-dramatic statement but stick with me…

This is the first week since Levi’s birth that I have felt like I have been able to claim a bit of my identity back. Don’t get me wrong, I love my identity as Levi and Malachi’s mother. I will gladly sacrifice all hobbies, luxuries, and moments of alone time for them and their needs. But our world requires that everything orbit around medications, appointments, surgeries…I have forgotten what the old Leah looks like.

This week I read 27 pages from a book- a non-medical, non-special needs book. I sat in the sunshine alone for 45 minutes. I ran a soccer practice while Jake stayed home with the boys. I went to work alone and cleaned out filing cabinets. I ran a few miles on the treadmill. I rode in the van with the windows down!

I took a deep, much needed breath.

The boys have several routine appointments each week but this was a vacation week for some of his therapists. We only had 4 appointments, all crammed into one day. That left us with 6 days of normal family time! What a blessing!

We spent most of those 6 days at the house, Jake and I taking turns for some “me” time. We would each take a chunk each day to do whatever we wanted- nap, read, leave the house for a bit.

The boys both really enjoyed the down time as well, Levi into everything he can get his hands on and Malachi as his ready and willing accomplice. Levi is getting good at rolling Malachi into different rooms and climbing him to reach things he knows he shouldn’t have. I was cleaning one day and heard the distinct sound of an air register being pulled up from the floor and a loud thump of something going into the duct work. The culprit was gone by the time I made it over there and I had to spend several minutes trying to figure out how to dig an unseen sippy cup from the vent. If you come by our house, ignore the new painters tape on all the vents.

I know I post a whole lot of pictures of Levi sitting on Malachi. It is because they are inseparable. It doesn’t matter what chair I put Malachi in, Levi will climb Mount Everest to get into his brother’s lap. I always ask Malachi if he is okay with Levi sitting there and he almost always signs yes. Levi brings toys up with him and shares so well.

Here is a silly video of the two playing nicely:

Malachi is able to communicate so much without saying a word. On Saturday we headed to his soccer game and his Mickey Mouse DVD accidentally got paused unbeknownst to us. By the time we got there he had the most sour look on his face. I asked him “Malachi, are you okay?” and he signed an angry NO. We didn’t know about the DVD issue so we went through all of the body parts that could possibly be hurting him…”Is it your tummy?” NO “Is it your ear?” NO. When we figured out the DVD hadn’t played we asked him “Is it because you didn’t get your cartoon?” and he signed YES and burst out crying.

I was proud of him for communicating to us, but also a little bothered that we are raising such an entitled six year old haha! We are going to have to start working through those emotions when he doesn’t get what he wants. It breaks my heart that he got so emotionally frazzled and couldn’t communicate that frustration building in him.

He stayed pretty cranky even after the game started but scored a goal within a few minutes and popped right back to his silly self.

It was his last game for the season so he got a shiny medal, something he was so proud to get.

Malachi’s number one fan! He finally caught on to the game, clapping avidly whenever someone kicked it into the net.

When you spend a week mostly at the house, there isn’t a whole lot to blog about…

We took some selfies.

Levi worked on his walking. Here is a video of him practicing with dad. Ignore the onesie wedgie:

Levi also learned how to make farty noises on the couches. This one was interesting to us as neither of us modeled the new trick:

Malachi played with all kinds of toys, using his imagination to pretend like they were alive and real. His favorite toy to play with this week was his switch adapted jack-in-the-box because it terrified baby Levi.

We watched the Lion King, Beauty and the Beast, read lots of books and made up lots of games. Jake and I trash talked our way through Jeopardy each night and sang karaoke for the boys. We just felt so….normal.

We looking in the backyard for more bears and watched the birds chase each other. We tried new foods and made a lot of old recipes.

Levi made some great progress this week with his sign language, signing “more” on his own several times when he wanted more food. He is also folding his hands when we pray, which makes my heart smile. I tried to snap a picture without him catching me during our dinner prayer tonight.

We knocked out lots of medical phone calls, fights with insurance, and appointment/trip planning for the next several weeks. We are still sorting out our Cincinnati appointments for our week long visit at the end of July.

Malachi had some temperature regulation issues this week, running a fever for two days. We think it is likely brain related because he isn’t showing any signs other than sneezing. We will continue watching him closely just in case.

Tonight Levi fell headfirst (for the second time this week) off of Malachi’s chair and hit his head on the tile floor. He was justifiably upset and hysterically crying which did cause his color to change quickly. I am sure if I had him hooked to the pulse oximeter at the moment that it would have shown a desaturation which bothered me from safe breathing standpoint. That is a big part of the discussion we need to have with his surgeons when we go to Cincy. While he is safe the majority of the time with his oxygen, what kind of damage will those brief moments have on him?

This morning Jake was given the opportunity to preach during the morning service. Every now and then when the preacher goes out of town he asks Jake to fill in for him. This used to make him extremely nervous, but this time seemed different. He seemed so confident in what God was telling him to speak about so I was really looking forward to hearing what he had to share. He spent hours preparing throughout the week.

Levi has been absolutely wild in church lately and sobs until he vomits if I attempt to leave him in the nursery. We made it through one verse of the first praise and worship song before his restlessness hit so I took both boys out into the lobby area for the rest of service. We are in a very rural part of Tennessee where technology hasn’t really taken over yet, but several weeks ago I asked them to run a speaker into the lobby for moms like me who have to sneak out with young children.

When Jake started preaching, both boys got very still and quiet. Levi crawled across the lobby and stared, mesmerized at the speaker that his daddy’s voice came out of.

Malachi sat as still as could be in his chair, clinging to every word. They love their daddy so much! And I am grateful that Jake loves the Lord and leads our boys toward God through his actions and heart.

The verse I want to share with you all this week comes from John 13. In this chapter Jesus is with his disciples for the Last Supper, the final time he will meet with all the disciples before he is arrested. Jesus got up from the table and began to do something that none of them saw coming- he began to wash their feet.

I mention this often, but I am a genuinely awkward person. I don’t really know how someone morphs into “awkward” but that transformation happened pretty early on in my life haha! And when you know you are an awkward person, it just seems to breed awkward moments.

Whenever I read about the story of Jesus washing the disciples feet I cringe, just imagining how uncomfortable that moment was for the disciples. To see the person that you respect and admire take on the task of a servant…what a profound thing to witness. And add in the beautiful and pure heart of Jesus, doing that task simply out of love. No motives, no ill-intentions, just pure love for these men.

Other than using my imagination, I find myself unable to relate with this particular scripture chunk. It isn’t common practice for us to wash anyone’s feet. Sometimes when I read scriptures like these, that are difficult to relate to, I find myself breezing through them.

But there is one verse in there that pulled at my heart this week. Jesus comes to Simon Peter to wash his feet and he says in disbelief “Lord, are you going to wash my feet?”

Jesus responds in verse 7 “You do not realize now what I am doing, but later you will understand.”

I got chills tying that statement. I have such a visual of Simon Peter looking down at the Lord next to his dirty feet. I see Simon Peter’s face turning red with shame at the filth he has on him.

But the filth doesn’t even phase the Lord. Our filth doesn’t even make him flinch. He sees those dirty parts of our lives, the parts we try to hide, and he bends down to gently wash the filth away. Only a loving God would do that.

There are so many times in my life that I have found myself in Simon Peter’s place. Again and again God has come and found me in my brokenness, my sadness, my sin, my pain and simply cleaned my tired feet and soothed my broken heart.

I can almost visualize the kind eyes of Jesus looking up at me and saying “You do not realize what I am doing, but later you will understand.”

God is all knowing, but our human hearts can’t handle the power of that trait. So as uncomfortable and awkward as it may be, sometimes we have to sit in that seat and allow Christ to remind us that later we will understand why our feet have to walk the paths that they do.

One day I will understand why God took us across the curvy, rocky, sharp paths of Malachi’s journey.

One day I will understand why God put mountains in Levi’s path but hasn’t yet given us the ability to move them, despite our desperate please and bushels of mustard seed faith.

One day I will understand. But for now I am called to sit in that seat and witness the love that Jesus has for our family, as he sees our wounds from the journey and longs to soothe them with his tender heart.

I am called to take that love that Christ has for the Carroll family and share it with others. I am called to minister to other weary, dirty-footed travelers that we meet along the way. I am called to share with them the hope we have in Christ.

I hope you let Christ wash your feet this week- even if you are awkward like me 🙂

Much love,

Leah

 

Another busy week in the books for the Carroll clan.

On Monday Levi and mommy headed down to Chattanooga for the dreaded swallow study. Now that his vocal cords are showing movement, doctors all want to see if he is safe to drink thin liquids. Our end goal would be to not have to use the g-tube anymore for his nutrition but that will require 6 months of us never using it.

I felt very confident that he wasn’t aspirating thin liquids prior to his cords moving so I was certain he would pass this go around. But in order to check that box on everyone’s list we jumped through the hoop and went for a formal swallow study.

 

I will assume that none of you have had to witness one of these studies so I will describe the process a bit. Levi is required to sit in a special chair that has a real time x-ray machine attached to it. Liquids don’t show up on x-rays so they add something called barium sulfate (a metallic compound) to the liquids to help them show up. The problem is that the barium is chalky, white, and doesn’t taste good at all.

So lots of problems with this…

1. Levi sitting in an unknown seat surrounded by machines all by himself.
2. Levi drinking and eating anything on command, especially when it really is a new concept to him.
3. Levi drinking something that tastes disgusting.

As soon as we plopped him in the chair the drama began, as we assumed it would. He took one swig of his sippy cup but as soon as the barium water hit his tongue he spit it out and didn’t swallow anything. We then tried barium laced applesauce and he refused that too and started panicky crying.

At this point my instinct is to pick him up and run, but as a medical mamma you learn that this isn’t really, TRULY an option. If I were to leave then the doctors would simply schedule another one and hope it goes better. It isn’t something we can simply just not do. So I went into medical momma mode.

Medical momma mode is a bit hard for outsiders to understand as it really does defy natural instincts. It requires that you remove all emotions from situations when you have no other choice but to embrace the suffering. Holding your child down for necessary IVs and blood draws, forcing life saving medicine down their throats, stabbing Malachi with two injections a day when he was going through his infantile spasms.

There is so much guilt when I have to go into this mode. I hate it. Genuinely despise it. And I always wonder what psychological impact this has on my sweet boys to see their momma doing things to them that causes pain and sadness.

So I forced barium water into my crying sons mouth, watching him swallow it instinctively with each inhale for more air as he grasped for me to pick him up and comfort him. And just praying that it would be enough evidence to never have to do this to him again.

We got the data we needed and then I did my best to rebuild the trust between Levi and I. What he did drink, even when crying, went down his throat correctly and none went into his lungs so he passed the test.

Speaking of tests, we still need to do one more overnight sleep study with Levi but this time we have been given the option to do it at home. Levi is no longer leaving his oxygen tubing and pulse ox sensors on at night so he has really been making me nervous. Last night he had a quick oxygen desaturation but most nights he has been holding his own after he tears his oxygen off. We will likely pick up the equipment for that study this week and try to knock it out.

Malachi and I made the trip to Nashville late Tuesday night and stayed the night in a hotel. And don’t worry- I packed my rubber gloves and hospital grade cleaner and scrubbed the fire out of the place before settling in haha. He was so excited about our “adventure” and loved the one on one time he got without little brother picking at him.

On Wednesday morning we went over to the hospital for two appointments, one with his orthopedic surgeon and the other with a spine surgeon. The appointments were routine, starting with x-rays. The orthopedic surgeon seems content with Malachi’s feet since his surgery in November. Malachi’s hips are both 100% out and we can now feel the head of the femur bone protruding all the way out towards the back of his butt. The biggest concern right now is pressure sores from the heads of those bones resting against things. But as long as they continue to no longer cause him pain we will leave them.

Malachi’s spine is progressively getting worse and there really isn’t anything we can do about it right now. He is at a 45 degree curve in the bottom of his back but the hope is to avoid any surgeries to place rods until he finishes growing. Sometimes with kids like Malachi the curve can put too much pressure on the diaphragm making it hard to breathe. We are nowhere near that point right now but will be followed by the spinal surgeon at least once a year to monitor the progression.

So no big decisions had to be made and no hard conversations had to be had. That is always a blessing!

Malachi was really buying into the idea that it was just him and mommy so I stretched out our drive home to make it a special day for him. We went to Chuck-E-Cheese and played games for about an hour. Overstimulating environments like these are hit or miss with him, and we know that strobe lights trigger his big seizures so I was a little hesitant but thought we would try.

He made it about 25 minutes and then had a massive over-stimulation breakdown, sobbing uncontrollably. These moments are so hard for Malachi; he wants to be there and play the games but his brain just can’t handle it. I asked him if he wanted to leave and he said no so we sat in  the back corner for about 20 minutes until he calmed down enough to play a few more games. Poor buddy. But he didn’t have a single seizure so that is progress!

Here is a video of him playing one of the games. He loved it!

We used the tickets he earned to get some cotton candy for he and Levi to share. He liked picking out the colors for each of them and settled on blue (for Spiderman) and green (for the Hulk).

We went a bit further down the road and stopped for a dinner date at Cracker Barrel. I ordered him his very own plate of mashed potatoes and gravy (usually he has to share with Levi) and we played every game on the kids menu together. His demeanor was just so sweet throughout the meal as he soaked in all the focused attention. After dinner he got to pick out a toy in the gift shop area and also pick out a candy surprise to take to daddy.

Malachi has been getting up consistently between 6:10-6:12 each morning, which means rare naps in the late morning if we are home. He has probably taken less than 100 naps in his lifetime so I felt like I needed to document.

It was a nice little getaway for the two of us. Daddy and Levi also seemed to enjoy the one on one time. Levi helped daddy put up some new shelves in the playroom.

Levi keeps pushing Malachi’s chair into the play room so they can play with toys together. It warms my heart and Malachi loves it too!

On Friday Jake and I celebrated our 11th anniversary! We headed back down to Chattanooga to cash in on a gift card to the Cheesecake Factory that has been burning a hole in our pockets. Why has no one told us how amazing their food is!?!?!

Whenever I have to make a medical trip or go through a surgery with one of the kids the stress of the situation completely kills my appetite. Anything I eat makes me feel queasy and that sick feeling lingers for several days. I had been feeling pretty anti-food since Tuesday morning but that delicious meal knocked me out of that funk!

We then followed through with our anniversary tradition of going to the arcade to play some games together. It is something we can take the boys with us to do and we don’t have to worry about them being too loud or not sitting still.

The next morning I got a text from the boys physical therapist offering to watch the boys so Jake and I could go on a date! There are not many qualified people that we feel comfortable leaving both boys with, and frankly Levi has not been very tolerant of anyone other than mom and dad lately. But we figured it was worth a try so we dropped them off and headed to dinner. It was a Saturday night so we called ahead and reserved a table and somehow managed to eat dinner, eat dessert, and get back to the boys in just over an hour!

It is absolutely baffling to not have the kids with us. It feels so awkward to just walk in someplace without unpacking kids and wheelchairs for 5 minutes. Jake looked in the backseat multiple times, each time panicking because the kids weren’t there.

Levi didn’t even shed a tear after we sneaked out! Baby steps.

“Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.” Ecclesiastes 4:12

One really neat thing about the Word of God is that you can read the same scriptures over and over again and have God reveal something new each time you read it. His words are LIVING and ACTIVE!

As I read that scripture this week I felt chills overwhelm my body. I have heard this analogy and verse several times but for some reason the words roared to life as I applied them to my marriage.

I have told you many times about the staggering statistics that surround the marriages of parents with special needs children. The odds are most definitely against us, and when I see the stress level we are forced to function at I see why so many marriages fail.

When I read the Bible I do so keeping in mind the intentional nature of God when he had the authors write each verse. I read the phrase “two can defend themselves” and recognized that as Jake and I apart from God. We can fight for our boys, we can guard them from the world that continually threatens them. We can swing wildly and defend well. But we simply cannot overpower.

Our life requires the cord of three strands. It requires Jake and I asking God to intertwine himself in our marriage, in our family, and in our day to day struggles. God cannot simply be one aspect of our lives…He has to be in EVERY aspect of this crazy life for us to overpower.

I am so thankful that God aligned our paths all those years ago, in a meeting He most definitely orchestrated and ordained. I pray that we always see the cord of three in our marriage and cherish the presence of God in our family.

Thank you all for your prayers of protection as we traveled this week and tackled some big appointments. We are looking forward to a much quieter week with just a handful of routine appointments.

And one final note- we still haven’t seen the bear so I think it is safe to say he moved on. We have had lots of visits from the neighbor dogs, cats, and Hank the pot-bellied pig but no bear.

Earlier this week some people in our town noticed two baby bears that had been abandoned by their mother. They got the right people involved and the sweet babies were taken to a rescue where they are receiving treatment and nourishment as one was just a meager 4 pounds.

This is the baby girl that they named “Dandelion”. I thought you all might like seeing a photo.

God bless you all this week,

Leah

 

It’s officially June y’all! This week we have medical tests for Levi and a Nashville hospital trip for Malachi, both of which are weighing heavily on my mind.

We don’t expect to hear bad news from either one, but cautiousness still lingers in my heart. Malachi will be seeing his orthopedic surgeon to talk about his hips, knees, feet, and spine. We know that a possible hip surgery is in the future for Malachi as both hips are completely out of socket, but we would love to prolong it as long as possible. The recovery from a massive surgery like this one is so physically taxing on his body. For those of you who are medical nerds like me, the formal name of the surgery is double femoral osteotomy where they completely saw off the head of the femur that is out of socket. Very painful!

Levi and daddy watching Malachi at his swimming therapy.

Levi will be attempting a swallow study, so I undoubtedly will have a funny story to share with you about that one next week. I can’t imagine it going well from a behavioral standpoint.

Levi and his best buddy Tanner. 

Last night Levi’s pulse ox was reading his heart rate a bit higher than his norm. Usually this means something is agitating him or he is running a fever so I watched him closely throughout the night. Around 3am he woke up screaming so we headed to the living room for an all nighter. He was hitting all the markers of having an ear infection so when Jake and Malachi woke up we headed out, dropping Jake and Malachi at church and Levi and mom headed to the doctor.

Our pediatrician doesn’t have Sunday hours, and inevitably Levi always develops an ear infection on Saturday night. We had a very difficult time finding walk in clinics that would see a medically complex child like him, even for something as simple as an ear infection. Now that he is off his daytime oxygen I thought we may be able to get away with it! We successfully made it to a room in one and as the nurse left to get the doctor she casually said “By the way, I forgot to ask if he has had any surgeries in the past?” I pulled out a copy of  his medical summary and her eyes grew wide. But after 20 more minutes of the doctor pouring over his medical diagnoses and asking lots of questions, he confirmed the ear infection and sent a script for an antibiotic.

Levi has been acting off most of the day today and took a 5 hour nap this afternoon. We will likely have another long night but hopefully by this time tomorrow he will be back to his silly self.

Malachi has had an amazing week. He started his summer swim therapy sessions and got to ride his horse on his belly like a superhero.

The biggest highlight (the thing he gets the most excited to talk about) was that he scored a goal in his soccer game. Malachi is strangely competitive which is so intriguing to me. At his last soccer game the final whistle blew and he burst out crying. I thought he was in pain or something was wrong so I started asking him what was making him cry. As I went through the list he indicated that he was sad about the game. I continued to ask him questions and it took all of 30 seconds for him to narrow it down to being sad about not scoring a goal. I told him how well he passed the ball to his friends in the game, but passing the ball doesn’t make everyone cheer like a goal does.

Here is a cute photo of Malachi and his buddy Lincoln. These two were in the NICU at the same time, although our paths didn’t cross again until recently.

We walking in on Saturday and found out that one of Malachi’s school buddies and his family had come to cheer him on. Malachi was all smiles when we told him they were there to watch him. I told him to show me his game face and he got super serious.

This time around we tried to put one in the net and he finally knocked one in! He was giggles and excitement as the crowd erupted into cheers for him. He laughed the rest of the game and we made it our priority to help our friends score some goals. He even got a few more headers this game!

Here is a video from the game to give you a visual of how it all works. We didn’t get his goal on film but he got close to scoring.

Jake and I planned a big youth group summer kick-off party and it was a blast! We spent longer than I care to admit filling chunks of panty hose with color powder but it was definitely worth it to see how much fun the teens had.

I claimed the role as photographer so I made it out relatively unscathed. But Jake on the other hand is still green.

On Friday afternoon we met up with the Robotics team teacher that adapted Malachi’s Wild Raptor ride on car. If you are new to the blog, the local robotics team re-wired a Power Wheels toy so that Jake and I can control it from a remote. Malachi absolutely loves his “Wild Raptor” and we are s grateful the team was willing to create such a special toy for him.

This particular teacher has a big heart and after completing the project for Malachi he has decided to create the same opportunity for other special needs children with unique needs. He is creating a project called “The Malachi Movement” to link up special needs families around the country with a willing robotics team close to them. They can submit their information and he will link the two parties and give them the tutorials needed to complete the job. He has also created a way for people to donate parts and even the car itself to the program for families that can’t afford to purchase the pieces required for the adaptations. I will try to get some more information out to you in case anyone is interested in helping financially.

Malachi rode his raptor this week with his cousin. They had a blast playing with the dinosaur head from it too:

This week I have been really challenged by the idea that we are to bring glory to God in every aspect of our lives.  When I realistically look at my days I find moments that I feel sure bring glory to God, but there are more moments that either a) aren’t necessarily “bad” but don’t glorify Him or b) do the complete opposite of bringing Him glory.

I have shared with you before that I continue to struggle with anger and resentment over things that are not in my control…which is pretty much motherhood summed up for me. There are so many missed opportunities for me to reflect Christ to my own children, and instead I choose to be angry. There are moments with Jake that I can reflect the servant’s heart of Christ but instead I choose selfishness.

There are so many moments when I am dealing with the medical community that I do not reflect Christ to others. There are moments I am ashamed of. Moments that are birthed from my frustrations and expectations.

There are moments of anonymity, when I am in environments where people don’t know I am a Christian, and I use that as an opportunity to act in a way that is contrary to the nature of Christ. That is so shameful to admit but something that our earthly minds convince us is okay to do every now and then.

But what I keep choosing to ignore is that God has given me a new heart. Not a new attitude, not a new disposition, but a new heart. A heart that is made like His.

Ephesians 4:24 “And to put on the new self, created to be like God in true righteousness and holiness.”

This week God has been challenging me to allow His Spirit to reflect from me in all situations, not just the easy ones. Doing that does not come naturally to any of us, even after God has transformed our hearts.

Living a life with God isn’t a one-time, check it off the list decision. It is a daily, hourly, second-by-second one that we have to choose again and again and again.

My prayer this week is that God is able to consume those selfish tendencies in my heart. I pray that He gives me the desire to be that mirror God calls us to be, and He continues to use me to reflect His beautiful nature to others.

Please be in prayer over our family this week as we tackle some big appointments!

Much love,

Leah