Sometimes the medically complex world hides around the corner and jumps out at us in the most inopportune times.

This past week Malachi and I were supposed to be in Nashville to meet with his surgeons and take his special trip. But Monday morning both boys started to show full blown symptoms of something viral. I initially held out hope that maybe it would be a short illness but by Monday evening Malachi was requiring supplemental oxygen.

Our appointment has been rescheduled for mid October, the soonest available date with these two surgeons. And as you can imagine Malachi was devastated. He was looking forward to his trip SO much and we had even started packing our bags and picking out which outfits he would wear.

By Thursday Levi was completely back to his normal, but Malachi’s body is still having a hard time recovering. He is still requiring 1-2 liters of oxygen but he is interactive and responsive which is a great improvement from earlier this week.

When Levi gets sick his airway gets restricted. Usually I can tell 24 hours before symptoms hit that something is coming because his stridor gets louder and he is very noisy at night. With his vocal cords being paralyzed there is not much room in his airway, so any tiny change makes it harder for him to breathe.

When Malachi gets sick we go into hospital mode, breaking out all of our medical machines and setting up home base in the living room. When Malachi is very sick we keep him upright when he sleeps in case he aspirates.

Our medical cart came in handy and had all the things we needed to avoid a hospital stay. His cough assist machine sends pressurized air into his lungs and then pulsate suctions the air out, something that we used several times each day to try to help clear his airway. His suction machine helps get any gunk out that he coughs up quickly. His pulse ox machine stays hooked up 24/7 to monitor his oxygen saturations and pulse so we can adjust supplemental oxygen accordingly. And his oxygen concentrator is vital! There were days this week we had to stay at 4 liters of oxygen to keep him in a safe range, which is my maximum comfort level for treating at home versus the hospital.

We are continuing to trial him off oxygen each day but his body just isn’t ready to work without the help quite yet. His discomfort has also been sparking some pretty hard seizures, and Malachi body is just so tired.

Sick weeks are very difficult physically, emotionally, and mentally. I go into a survival mode of sorts and ignore the normal rules of night and day. We just do the best that we can to keep everyone alive and home. We played lots of games, watched lots of movies, and used our imaginations more than ever before. We also took did lots of baths/showers, laundry, and lots of cleaning syringes. When the kids are both sick and we are adding in Motrin to our regular meds we use 28 syringes a day (all meds for both boys are administered via g-tube).

Levi even “made his own breakfast” while I took a quick shower one morning.

Malachi and I spent some time talking through some options for a mommy and Malachi trip. Jake and I decided that since this was the second time these Nashville appointments/trips have been rescheduled that we needed to prioritize his special trip instead of waiting until October. I presented him with so many options but he wasn’t reacting very enthusiastically to any of them.

When Malachi was little we took him to Medieval Times, so I thought I would see if that was something he would enjoy. When I asked him about it he started madly signing YES YES YES! That was it…the one magical thing he was waiting for haha. When Malachi is feeling 100% he and I will drive to the Medieval Times outside of Atlanta and attend a show, stay the night in a hotel, and come back the next morning. Having something fun to look forward to has perked him up so much. He giggles uncontrollably when we talk about it and seeing that smile makes again me so happy.

We have been trying short trips out this weekend to test Malachi’s stamina using the portable concentrator we were able to get with grant money when Levi was on oxygen 24/7 as a baby. What a blessing that machine has proven to be. Malachi is only handing a maximum of 2.5 hours before his numbers start to drop. So this week will likely be another week of staying close to home.

Jake and I wear lots of hats in our community and when weeks like this pop up we just do the best we can to divide and still continue our other responsibilities. Jake took over soccer practices and games as well as Wednesday youth group but by the end of the week I was ready for some mental distraction. The youth were scheduled to come over tonight for dinner and Bible study and we felt like the kids were healthy enough to continue with that plan (with some deep cleaning of course).

Tonight we had a packed house with over 40 teens. And Malachi sat in the middle of them all, hooked up to his machines and as happy as can be. As I watched the normalcy of the reactions to Malachi it reminded me of just how blessed we are to live in this community and to be surrounded by others who have accepted our normal as their normal. What a blessing.

Over the last few weeks I have had a verse playing in my head over and over again. It is a common one that most of you have probably heard as it appears multiple times in the Old and New Testaments. But for tonight’s entry I will focus specifically on Mark 12:31. Jesus was asked “Of all the commandments, which is the most important?” And this was Jesus’ response:

“And you shall love the Lord your God

with all your heart,

with all your soul,

with all your mind,

and with all your strength.”

The response could have simply been “You shall love God.” But It goes into detail about the ways we are to love God, and when scripture does this it always catches my eye as being something important to pay attention to.

As I looked at this verse I started to process the differences between each of these things…your heart, your soul, your mind, your strength…and evaluating how I am loving God in each of these areas. It is easy to say “I love God” but do my actions reflect that love?

Two weeks ago I felt conviction over “with all your strength”. I thought about the life of Christ and how He poured himself out for others during his short time on earth. He didn’t focus on “me” time, instead He focused on doing the will of the Father. And God continued to sustain Him. He even sent angels to minister to Him on two specific occasions (Matthew 4:11 & Luke 22:43).

We live in a culture that prioritizes self. But when we are loving the Lord our God with all of our heart, soul, mind, and strength I don’t see how that fits in there.

And just as God often does, He provided an opportunity this week for me to practice loving God with all of my strength and serving Him by caring for these precious boys that He has entrusted to me. I poured out every ounce of my energy as an offering to God, and when I changed my view from obligation to act of worship it blessed me.

There is so much power in the foot washing.

And after a week of pouring myself out I find my cup is so incredibly full of a joy and energy that is undeniably a gift from God.

God doesn’t need our strength. But oh how He loves to multiply it when we willingly and gladly place all that we have in His hands.

Please continue to pray health and improvement over our Malachi.

Much love,

Leah

This week started with a Monday full of appointments. The boys see most of their specialists together, with the exception of neurologists. Malachi has been diagnosed with intractable epilepsy (uncontrollable, multiple seizure types) called Lennox Gastaut Syndrome and sees a neurologist specialized in epilepsy called an epileptologist. Levi just has one seizure type that is controlled right now so sees a different neurologist.

Levi’s neurologist also saw Malachi before his seizures progressed so he is very familiar with our family. He has also watched Malachi grow up and knows his norm well.

When he walked into the room his eyes immediately went to Malachi, who was grinning from ear to ear. As the appointment continued he kept his curious eyes on Malachi, which made me wonder if he realized we were actually there for Levi…a theory that I quickly debunked.

The appointment ended and before he left the room he turned around and said “This is the most engaged and interactive I have ever seen Malachi. He seems to be doing really, really well today. What is he so excited about?”

I laughed, because the truth of the matter was that Malachi was THRILLED to be at an appointment that wasn’t about him. He smiled from ear to ear the whole time. And to add to the drama, the doctor told me that Levi needed bloodwork. The fact that Levi had to get bloodwork done instead of Malachi was a first and set him into giggles (much to Levi’s dismay).

The blood lab employees know Malachi well and as Levi screamed during his draw Malachi just sat in his chair and smiled smugly. The phlebotomist turned and said “Are you just happy it is him and not you?” To which Malachi avidly signed YES.

And as you can imagine, Levi’s blood draw was pretty traumatic. The seizure medication he is on can cause his sodium levels to dip low so we have to do routine draws. Unfortunately they called a few days later to let me know that his sodium levels are in fact too low and they asked us to do another blood draw in the next three weeks before we make a plan of action to get those levels normalized.

Shhh….don’t tell Levi. Or Malachi.

The brotherhood of these two continues to be the highlight of each day. Malachi is getting more and more mischievous. One afternoon Levi feel asleep on the couch next to Malachi and I. I leaned in and whispered to Malachi “Be very quiet, Levi is finally sleeping.” Malachi smiled and proceeded to shout at the top of his lungs, trying to wake him up. Little stinker.

And Levi’s heart of inclusion continues to grow. This week he keeps scooting Malachi all over the house to be close to him. He pushes him to the entrance of the play room so they can play together, putting Malachi in handcuffs and taking turns being the policeman/firefighter/ballerina/magician.

Soccer season has officially begun, which is a family affair with the help of friends. Going to soccer games is one of Malachi’s favorite things to do as he loves the emotions coming from Jake as he coaches. And Levi loves playing with his buddies.

I can’t get past how much Levi has grown lately! He will turn 5 years old in just three short months.

This week is a big one as Malachi and I prepare for our Nashville trip. To say that he is looking forward to it would be an understatement. There is a medical side to the trip as we meet with Malachi’s ortho surgeon and his spine surgeon.

Last year his ortho surgeon mentioned the need for some more foot surgeries and tendon releases. I am really hoping it is something we can continue to put off, but regardless this appointment is to evaluate that, not actually perform the surgery.

His spine curve last year was 45 degrees and we are continuing to watch that for any major changes. Many kids with Malachi’s spasticity require major spine corrections in their lifetime, a surgery that is a BEAST and requires metal rods to be fused to his spine. This would be a very hard surgery for him and one we are not eager to have. But the body positioning can create pressure on the lungs and make it difficult for him to breathe over time. We are continuing to pray that Malachi’s quality of life can continue without these major interventions. While I don’t suspect that his degree is significantly different based on what I can see, these appointments take me down some difficult mental “what ifs”.

There is also a fun side to the trip each year as we make this a special mommy/Malachi trip. I let him choose the activities we do and he takes the role very seriously. This weekend I sat him down and presented all of the options to him and it took him just ten minutes to set our itinerary.

He wanted to watch a new movie so I pulled up the trailers to a few. When we finished the trailers I gave him the titles of the movies he could choose from and then gave him the multiple choice list, pausing after each one to allow him time to say yes or no. “Minions”? no reaction, “Super Pets”? no reaction, “Jurassic Park”at the hotel? Firm NO sign.

After we narrowed it down to two I started the list over again and again he sat stone cold faced, refusing to sign yes or no. I then asked “Do you want to see both of them?” And he nearly came out of his chair he was signing YES so hard.

He chose a few more activities to do, but his primary goal is watching TWO movies while we are there…which mind you is a 24 hour trip. I love his opinions and the freedom he feels expressing them. He also made sure I knew that he wanted a cookie while he is there. Last year he had a cookie and I guess that has become a tradition, because he has never EVER chosen a cookie over the other presented options.

He giggles every time I mention spending the night in a hotel. I can’t wait to share our adventures with you in next week’s blog!

Luke 9:62 But Jesus said to him, “No one, after putting his hand to the plow and looking back, is fit for the kingdom of God.”

In this scripture Jesus is talking specifically about the cost of following Him, and the level of commitment He desires in that walk. Too often we cling to pieces of our former selves and the mix between the hot and cold makes us simply lukewarm in our walk with Him.

I have been really thinking about this verse this week, trying to evaluate the ways in which I “look back”. What things from my past tend to catch my attention and slow me down in my current walk and work with God? What things are my eyes and memories drawn to?

And the answer that I have come up with has surprised me a bit.

My past is littered with hard things. Lots of rejection, lots of insecurities, lots of broken relationships. Then layer on the countless medical traumas with the boys and all of the memories that trigger from those events.

These stories in my past and these scenes that I can’t seem to forget are not in themselves sinful….but oh how they are so distracting! I can be plowing along and something will spark a memory and the emotions that come with it.

The devil can easily take our memories and use them to distract us from the work God is calling us to do.

Sometimes I find that I have created an idol out of my “victim moments”…moments when someone else’s actions truly hurt me. I cling to my hurt, feeling justified in it- and the world would absolutely affirm me in those feelings. But God calls us to a life that looks forward, not back as He called us to draw nearer to Him.

Yes, our testimony can be what God has brought us through. And the lessons we learned along the way. But there is also such a testimony in the plowing we continue to do for the Kingdom of God despite the distractions from our past that beckon to us.

“…forgetting what is behind and straining towards what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.” (Philippians 3:13–14)

This week I am praying for focus. I am praying that I am able to fight the temptation to dwell in the past hurts and traumas the devil continues to highlight in my life.

Please pray for our family this week as we tackle another medical trip. Pray for Jake and Levi as they hold down the home front, and Malachi and I as we travel and meet with doctors. Pray that my heart is prepped to receive any potential hard news we may receive.

Much love,

Leah

This week we visited the GI doc for weight checks and g-tube talks. When I talk to the boys about this appointment we call it an “easy one” because it is just talking and very minimal interaction between doctor/patient. Levi is still carrying some major anxiety in medical settings, but really did well regulating his emotions in this one.

We are in the season of preschool life where he wants to dress himself and doesn’t always put things on the right direction, so ignore our backwards shorts and mismatched outfits…it simply just isn’t worth the battle.

We have incorporated a lot of big changes in Malachi’s medication routines and daily routines in the last year due to his lung condition, and one of the side benefits from these changes has been weight gain. He is not working as hard to breathe with the new regiment (cough assist and antibiotics every Monday, Wednesday, Friday for lung bacteria) and he is able to put on a little more weight.

This has obvious pros and cons. The doctor is pleased with his growth, but he is still significantly smaller than a typically developing 9 year old at just 38 pounds. We could always increase his caloric intake each day but we are also recognizing that the larger he gets the more physically difficult it will be to safely care for him. So we are always working towards that delicate balance of health and strength, making sure his nutritional needs are met.

Levi is weighing in at 36 pounds and the GI doc seemed pleased with where he is at on the charts. Levi’s breathing also makes him burn more calories throughout the day so we are continually working to find that balance for him based on his physical activity each day. He is eating food by mouth often and frequently, but it still isn’t enough to sustain him. Right now we are giving him 4-8 ounces of high calorie formula through his g-tube during the daytime and he also gets about 20 ounces through his tube while he sleeps at night.

Every day is a new feeding routine for Levi based on what we have planned for the day and how active he will be moving. His mood is very much affected by his caloric needs, so if we don’t plan well with extra feeds we are dealing with a very cranky, hungry 4 year old who can’t be fully satisfied by table foods.

Over the last few years I was very hopeful we would be able to get Levi to the point where he wasn’t dependent on the g-tube. Now that he is taking seizure medications twice daily and his activity level is increasing (meaning work of breathing is also increasing) I have put those goals to rest and we are simply accepting where we are at right now. Our only goal is health and growth for right now.

Speaking of breathing….this week we did several play dates with friends. Levi’s stridor (noisy breathing) came back often during friend time and having breathing safety back on my radar is disheartening. It has been a reminder of the long term nature of his diagnosis and the ever changing anatomy and safety we are dealing with. I am having to remind his often to sit and rest so he can catch his breath.

With Jake back at work and the boys being stuck with just mama each day we are seeing a huge increase of jealousy between the boys. Levi will verbally affirm this saying “Malachi is getting ALL the attention.” And when Malachi is feeling those same emotions with Levi he signs NO and makes sure I see that he isn’t happy.

Today Levi has been upset because “Malachi has more best friends than me”. To which Malachi avidly signs YES YES to. The triggers for each new frustration are comical.

I went out with a friend this week and had the boys with me. Levi got to hand the cashier the money which set Malachi into a NO face and seething with jealousy. So I let Malachi hold the receipt and carry some forks.

The fork carrying set Levi into a fit of jealousy, crying because he wanted to hold the forks. Malachi then repeatedly waved the forks in the air in a gloating fashion, making sure that Levi saw him continuing to hold the coveted items.

And if I am being completely honest with you all…

I am loving it.

Seeing such normal brother behavior has been such a gift. Seeing them bicker in their own ways has brought me so much joy and reminded me that God is a loving God, sprinkling our challenges with glimpses of normalcy.

The love that they have for one another is unique and special. To Levi, Malachi is simply his brother. And I love the pure relationship they have- unpolluted by the world and it’s standards.

And even the bickering has unlocked so many new moments of communication with Malachi and increased his desire to be heard. Having Levi around has become the motivation he needed to let his voice be heard.

Our days are still filled with lots of challenges, lots of seizures, very little sleep, and a whole bucket full of varying emotions. But we are healthy, happy, and thriving.

Transparency time: digging into God’s Word has been hard lately. I am still making time to open my Bible and spending time in prayer (OFTEN) each day, but the mental cloud that is following me during this transition time has been making it challenging.

When I go through cloudy seasons like this I try to saturate myself with God things. We play a lot of praise and worship music, I play the Bible app reading scripture as I drive to appointments, and I try to pick one scriptural truth to repeat over and over again each day to myself and to the children.

Being youth pastors we spend time in the word each week preparing Bible studies, but a relationship with God is such a personal one. Taking time to connect with the Father in my personal struggles and worries is also vital.

As I read through 1 Peter this week this particular verse caught my eye and got the wheels turning in my brain and heart.

1 Peter 3: 4 “but let it be the hidden person of the heart, with the imperishable quality of a gentle and quiet spirit, which is precious in the sight of God.”

The hidden person of the heart.

This led me to so many questions: Is the outward person that I present myself to be the same as the hidden person of the heart that God sees? Does my heart reflect a gentle and quiet spirit?

And as I processed those questions I felt the Lord gently pointing out the “loud” in my life. Pointing out the ways that my flesh contradicts the Spirit of God inside me.

We don’t have to focus on practicing or creating the gentle quiet Spirit inside of us, this hidden person of the heart. That is Christ in us, who has transforms us into His image. He does the work for us as we simply connect to the Vine.

Sometimes I need that reminder that a walk with God requires a heart of humility and gentleness. A soft heart instead of a heart of stone.

Ezekiel 36:26-27 “I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws.”

This week I am thankful for the gift of the Spirit of God inside of me. May we never take that blessing for granted.

Please pray specifically this week for an unspoken prayer request in our family. And pray for our endurance as we continue to settle into new routines.

Much love,

Leah

This week was a “to-do list”week. My brain was swarmed with the many time sensitive things that need to get done in addition to the hourly tasks that being a mom (and a medical momma) requires. I could tell I was starting to become fragile. I don’t know if that ever happens to you, where you feel like you might start crying at any moment? So in an effort to regroup I started the to-do list and celebrated each checkmark I successfully put on it after each completed task.

It is still incredibly long, but the items I have left are the ones that require time AND mental focus. I am able to sacrifice the time but not quite ready to expend the focus. Maybe this week I will have the clarity of mind to knock a few more things off the list.

One of the biggest setbacks from our wonky sleep schedule is that my prime focus hours are between midnight and 3am, and unfortunately the places I need to call and coordinate with aren’t open during that time slot haha. And yes, Malachi is back to wild sleeping again this week- I celebrated too soon. His oxygen levels have been dipping a bit right before bedtime so we are using cough assist at night as well to help clear his throat.

Aside from oxygen dips and very little sleep, Malachi is doing amazing. He has been hilarious these days with his strong opinions and imagination. The jealousy between Levi and Malachi is at an all time high, and I can only assume Levi’s trip to Ohio fueled that fire. If someone that Malachi really loves talks to/about Levi he rolls his eyes and signs no.

And Levi reciprocates the jealousy. Today he got mad at Malachi and said “I’m going to say something mean to Malachi. Malachi, I don’t like your wheelchair.” This is new territory for us to deal with and to be honest, it is somewhat entertaining to see one verbal child and one non-verbal child get so frustrated with each other. It is a precious gift of normal for us as parents, even though sometimes it doesn’t feel that way in the moment.

Levi is exhibiting some behaviors that we often see post op. He is highly emotional and very guarded, still dealing with trust issues with me specifically. This is always a hard season for us both. These emotions flared at therapy this week when they switched gears and had a giant water slide for the kids instead of riding horses. I talked him through this change and he immediately spiraled.

But then there was Malachi, happy as could be to be flying down the slide like a rocket.

Friday evening Levi pulled his shirt off to get in the bath and in the process it caught his g-tube and pulled it out. This usually causes a quick moment of pain and then sheer panic sets in. Think of an earring getting tugged out of your ear with the back still on. He is very sensitive about his tummy tube and panics often over it with the slightest bump or twist. So to have it come out set him into a frenzy.

The balloon itself (think of it as the “earring back”) popped from the incident so we had to put a whole new unit in. When he was young I could hold him down and get the job done but now that he is larger it takes negotiating and lots of patience. When he is crying and screaming his abdominal muscles contract making it hard for me to get the stem of the tube into his stomach. So we have to get him to calm down and then try insert the new tube.

Fun fact: insurance only allows us to get 4 g-tubes a year for each kid (they have different sized g-tubes). We are supposed to change it every 3 months because the inner components can get worn down from the stomach acid. But I typically try to get 3-5 months out of each one so we have some cushion.

But here is the frustrating part about this week’s incident…I JUST put that tube in for Levi while he was still under anesthesia in Cincinnati two weeks ago. If he has a surgery I try to time the g-tube change with it to reduce the trauma at home. So now we are back to the anxiousness of trying to get a few extra months out of each tube.

I didn’t take very many photos this week due to my mind being focused on other things. But I absolutely love this video of Levi from 2 years ago as he was practicing jumping. Look at that sweet baby:

Malachi is officially registered as a homeschool student this year and I am going to attempt to re-establish routines and structure. Typing that makes me nervous. When I set out to re-structure it often creates opportunities for disappointments and reality checks. It is hard to plan any further than about 6 hours in our world, and when I come up with a beautiful plan on paper something always hijacks it leaving me disappointed.

Getting Malachi to a school building each day by a designated time is just simply not in his best interest. His morning routines take hours and his sleep habits are ever changing. We also worry about the amount of sickness he is exposed to in the school system.

This week I have found so much encouragement in Hebrews 12:1-3 and I am hoping it blesses you too.

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

I have been feeling convicted lately to re-evaluate my life and find the things that “hinder” and “entangle” like the verse mentions. What things are keeping me distracted from my calling as mother, wife, and daughter of the King?

I am most definitely running a race and weeks like this one cause me to question my perseverance. I think perseverance is a mindset so when it is lacking it usually means that my mind is focusing on distractions. Weariness sets in when I allow myself to look to the left and the right, desperately searching for signs of progress in this race. But faith means I trust God, even when I am running in place and not making any forward motion.

God isn’t looking for progress in our race. He is looking for perseverance and intentionality with each step. He is looking for eye contact.

When was the last time you fixed your eyes on Jesus?

Please pray for us this week as we continue to navigate new routines.

Much love,

Leah

Our final week of summer break has officially ended and I am mentally trying to pump myself up for mothering solo. It is always blessing having Jake home and being able to split the responsibilities. He heads back to work in the morning, and it will take a few weeks for the boys and I to acclimate again.

Malachi has settled into a very manageable and generous sleep cycle, going to bed by 2am and not waking up until 9. We never know how long each new cycle will last but I am really hoping this can be his new norm for awhile.

In an effort to get Levi to sleep until 9am I am putting him to bed at midnight. It is difficult to have to tailor one bedtime to suit an ever changing one, but it is the only thing I can think of to preserve a bit of sleep for myself.

Levi has recovered well from surgery last week, but is still having some issues with aspirating. I am not completely sure why this issue is lingering post-op and I am a tiny bit concerned. He has also been extra cranky this week, but I am thinking this is more of a caloric needs issue- and the two issues could possibly be related. If something is making it uncomfortable to eat and drink then his blood sugars can get wonky. I am going to start doing some daytime g-tube feeds with him this week to see if I can notice a difference.

Excuse the play room explosion in the above picture! We had lots of play dates this week!

The soccer team that we coach hosted a soccer camp for kids this week and Levi had so much fun! We ran them through stations and by the time he made it to mine he had a loud stridor and his little ankles just couldn’t handle anymore activity. They were folding out, even with his braces and supportive high top shoes.

If I am being honest, this realization made me so sad. I had convinced myself after our indoor kids soccer league that Levi was going to be able to play sports, despite the initial reports from doctors that many children with his condition cannot play sports that involve running. Watching him fatigue so quickly and breathe so hard made me process that Levi may have to be selective in his hobbies.

Malachi has been growing so much lately and is getting heavier and heavier! He also has been so playful and full of energy. He has gone from swimming for 30 minutes at a time to over 3 hours!

Malachi is also cognitively growing in so many ways. He is 100% aware of every conversation had in his presence. He is aware of when he is included and keenly aware of when he is being excluded. Before Levi was active we were able to get away with a lot more, but now Malachi is aware when Levi is being given the chance to do something Malachi cannot. As a parent, it is so hard to balance when to prevent Levi from doing something for Malachi’s sake and when to allow Levi and try to help Malachi process through those emotions.

This week we went to a local climbing place for a family members birthday party. Malachi was completely fine until all of the kids started climbing, then his emotions changed. It is a hard decision for us to make…do we keep him home from these events to spare him from feeling excluded (not intentionally by people, but by experiences) or do we continue to take him and have lots of conversations before and after to help him have realistic expectations?

The medically complex life is full of decisions that I do not feel prepared to make. There are no books, manuals, or mentors who have walked the exact same journey I am called to walk. Even other medically complex moms can only offer suggestions, as each child with complexities is so incredibly unique.

I find my prayers often diverting to the same theme…wisdom. I often pray that God gives me clarity of mind, grace for my moments of regret, and lots and lots of God-given wisdom.

This week I spent some time studying Solomon in his prayer for a discerning heart from 1 Kings 3:7-9. I actually have been really debating whether or not wisdom and a discerning heart are truly the same thing. But nevertheless…In verse 5 we read: God said, “Ask for whatever you want me to give you.”

Solomon speaks back to the Lord with this request:

 “Now, Lord my God, you have made your servant king in place of my father David. But I am only a little child and do not know how to carry out my duties. Your servant is here among the people you have chosen, a great people, too numerous to count or number. So give your servant a discerning heart to govern your people and to distinguish between right and wrong. For who is able to govern this great people of yours?”

There are so many powerful, noteworthy things in this tiny chunk of scripture. The first being God’s sentence to Solomon. He didn’t speak like a genie in a bottle, offering to grant one wish. He simply said “Ask for whatever you want me to give you.” There was no promise of granting the request, just a relational moment between the Creator and his creation, wanting to hear his heart.

How often do we verbalize to God the things we desire? If we see God as our Father, why do we keep our heart’s desires hidden from Him?

Solomon’s response related to me in so many ways. Particularly the part of “But I am only a little child and do not know how to carry out my duties.” WOW what an accurate portrayal of the special needs parenting world. But the more I read it the more I recognized all the other ways in which this sentence applies to my other roles (and possibly yours). Inadequacies are rampant in our callings in life. Very rarely do I feel confidently qualified.

Which reminds me of the importance of humility in our walk with God. Oh the beauty of God shining through our inadequacies and filling the holes in His perfect way. And what a faith building scene to witness.

I was also struck by Solomon’s word choices in his prayer to God. His continual reference to himself being a servant to God is such an honoring stance to take. It is easy to view myself as a child of God, a role that is bestowed by His grace and atonement. But to in turn view myself as a servant of God, someone who desires to carry out the tasks He has written for me…what a beautiful gift it is to God when we look for ways to bring Him glory and honor. What a transformation of faith we can experience when we wake up every morning, looking forward to the to do list written for us by our God.

Please join me in praying for a discerning heart as we navigate this complex world. And pray specifically for our transition as Jake goes back to work.

Also, please be in prayer with me about this blog. We have written an entry every week for over 9 years and I don’t feel led to stop writing. But I do periodically prayerfully reconsider the frequency of entries. I write for myself mostly, to be able to give room to process emotions in a safe place. But if even one person can draw closer to God each week then it is worth continuing. Please join me in praying for a very clear direction from God.

Much love,

Leah