Blessed Be the Name

Brace yourself…I have an illogical amount of photos to share from our busy week.

img_1078

Jake had the week off for fall break (yes, a wonderful week off that southerners invented) so we did our best to be intentional about using the time wisely. It is so easy to justify NOT doing things when you have children with complex needs. On a pros and cons list we are always heavy on the cons. But we can’t just talk about wanting to give them a typical life- we have to be willing to actually do it.

And almost as if we needed another push in the right direction, 4 of our 6 appointments for the week cancelled on us leaving us with some rare wide open chunks of time.

img_0752

On Monday we made a trip down to Chattanooga to go to the zoo. It is a small zoo but perfectly suited to our needs. Levi hasn’t always handled the zoo well and this trip was no exception. Malachi was ecstatic about going and especially about seeing the jaguars.

img_0780img_0790

img_0772

Right next to the zoo is a massive handicap accessible playground so we took the boys over to check it out. Levi had never been on a playground before (germaphobe momma) and he loved every second of it. We were reminded that he knows no danger and is still learning the whole concept of cause and effect.

img_0806img_0821

On Tuesday we hosted the first round of the tournament for the district championship. Our girls were able to snag the win!

img_0856

On Wednesday we took the youth group out to a local campground for some tin foil dinners and flashlight tag. Malachi and Levi love spending time with the big kids!

img_0453

Thursday was our busy day and started with a trip to the aquarium at Malachi’s request. His eyesight is improving so much and it was exciting to watch him track the fish. He tried hard to catch a glimpse of every creature that came close. Thankfully the otters, sharks, and penguins all got very close to him and swam right within his line of vision.

img_0980

img_0960img_1025

Again, Levi was not a fan.

Malachi also got to pet a snake! He waited patiently for his turn as the woman discussed the type of snake and different facts about it. He clung to every word, his eyes wide with wonder. He is such an intelligent kid, I wish you could see how well he handles receptive communication.

img_1048

On Thursday night we took our soccer team to their district championship game. The game went into overtime and finally had to go to sudden death penalty kicks. Unfortunately we fell short earning 2nd in the district but we  still have a chance to earn Regional champions. On Tuesday we will travel 2.5 hours (close to the border of Kentucky) to play our first round of the regional tournament.

And then there was Friday! I still had to work on Monday, Wednesday, and Friday this week so we did our best to cram these adventures around my work hours. Friday afternoon we took the boys to the pumpkin patch, which proved to be their favorite adventure of the week!

img_1359

img_1092img_1169img_1105

Malachi jumped with his daddy on a trampoline style pad and I took a short video to share with you:

Levi soaked it all in and even got to eat some hay before daddy caught him.

img_1402

They each picked out a pumpkin which we will be painting soon.

img_1284img_1306

And we all four rode the cow train which was an interesting endeavor.

img_1347

The week was refreshing for us as a family. Sometimes we just need to pretend we are typical, and that is what we really tried to do this week. It is so important for us to create these opportunities for Malachi, knowing that we may not be able to do all these fun things as easily the larger he gets. The photo on the left was from 2017 when I was very pregnant with Levi. You can visibly see how long his legs have grown!

img_1401

 

With less appointments this week we spent a lot more time around the house. I love watching Levi play with Malachi. Their love is so special. Earlier today I was cooking for the youth group and things were suspiciously quiet so I went on a hunt to find Levi. I peeked over the couch to see him sitting on Malachi’s lap and leaning down to give him a  kiss. Their bond is so special.

img_1436

Sunday nights have changed dramatically now that we are holding youth group here at the house. I start cooking around 2:30p and the kids come at 6:30 and stay sometimes until 10:00! We get our two to bed and I start writing the blog. I typically finish typing it around 12:30a and then head to bed myself for a few hours of sleep before Malachi wakes up.

Last Sunday night Malachi just couldn’t seem to get comfortable in his bed. He squirmed and wiggled all night long and I checked on him over the monitor what felt like hundreds of times. Levi also has had something GI going on and we have had to fiddle with his feedings, especially at night so he doesn’t throw everything up. Needless to say, it was an up and down night.

Right before I closed my eyes that night I read a post in one of my Facebook support groups about one of the warriors passing away. When that happens in our online community it is always a shock and a blow, as we can all relate to the situation with our own fighters.

This one hit me exceptionally hard though because you could tell by the young boys photo that he was not nearly as severe as Malachi. I read through the comments and found one where a brave momma asked the boy’s mom how he had passed (a question we are all asking but one we don’t want to verbalize). She was very gracious and explained that it was a freak accident. He had fallen out of his bed and his mouth was too close to the side of the mattress causing him to suffocate.

I prayed for that family as I drifted off to sleep, not even being able to imagine what their hearts must be going through.

img_0895

Little did I know that on that very night we too would have a scare of our own with Malachi. I posted this to my Facebook page and it just seems appropriate to share it here as well:

It makes me sick to my stomach to even type this, but I just feel like I need to speak it. We almost lost Malachi early Monday morning while we slept.

I recently moved Malachi from our bed back into his room where he has a special mattress that helps keep him in a proper position while he sleeps. We have a baby monitor on him that stays inches from my face every night, one that I obsessively check while he sleeps. I wake up and check the monitor for Malachi and check to make sure Levi (sleeping in a crib next to me) hasn’t gotten any cords wrapped around his neck…something that happens more often than I care to share. I also run my hand over Levi’s belly so I can tell if his tube has been pulled out or burst while he sleeps. I literally do these “rounds” at least 8 times a night.

When I tuck Malachi in at night I have a weighted blanket that we strategically wrap around his lower legs to keep him from contorting his body while he sleeps. Both of his hips are dislocated as are his knees so he doesn’t bend his legs. But he does fold at the waist and fling his pencil straight legs up which causes him to wake up…the weighted blanket helps prevent this.

Malachi usually wakes up around 4am but for some reason he stayed asleep that night. I sleep in a twilight sleep and jump anytime I hear either boy move and around 6:30 I woke up to a very faint noise. I glanced in the monitor and at first it looked like Malachi wasn’t in the bed, but then I saw a tiny movement and realized that he had the weighted blanket up over his face, covering his entire body and head. I am baffled as to how this happened as we are so safety conscious with that blanket and setup.

I ran to his room and grabbed it off of his face and he took a big gasp of air which sent chills down my spine. I snatched him up and held him close and asked him if he was scared and he signed with his mouth that yes he was, which shattered my heart.

Had I not that faint gasp for air over the monitor things could have turned out very differently. He lacks the ability to grab things and I don’t think he is strong enough to push a blanket off successfully. Asphyxiation has always been my biggest fear with him.

All day I haven’t been able to get this incident out of my mind. I keep replaying that visual on the monitor and that sound of his gasp over and over in my head. The guilt is overwhelming and such a heavy cloud on me right now. Last night I couldn’t sleep and instead just watched him, that sick feeling in the pit of my stomach.

Sweet Malachi is so forgiving and has recovered from the incident just fine. But I can’t shake it. Being a special needs mom has a unique set of challenges but knowing that his delicate life rests in my hands is terrifying. There are so many horror stories like this one that didn’t end well- things that could have been prevented with just one tiny change in a routine.

Today I have hugged Malachi and covered him with kisses. I have thrown out that stupid blanket. And I have promised him that I will never make that mistake again.

But I have also prayed over his death. I have prayed that Malachi will always feel loved, safe, and comfortable. That he will never again need to feel the fear and helplessness he experienced this morning. I have prayed that when God carries him to heaven for his complete healing that He will do so in a painless, beautiful way.

This is the special needs mom life. We beg God for life for our children, yet also pray fervently over their death. I never knew a world like this one existed. A world full of so much beauty yet so much sorrow. A world where you are reminded again and again that your child has been entrusted to you for an undefined amount of time. That unknown timeline for their lives can drown you if you let it.

Tonight say a prayer with me for the special needs momma. Pray that the guilt and fear that the devil likes to plant in our hearts would wither and die. Pray for boldness and courage as we fight alongside our warrior children. We can’t afford to be meek. And pray for peace for our weary and worried hearts as this battle can get exhausting.

Needless to say, I spent the next several night watching him like a hawk instead of sleeping. It took me most of the week to get that nauseous feeling out of my stomach as I pondered the “what ifs”. The whole situation shook me to my core.

Our life with Malachi is very difficult, but it is so very special. Just knowing him for these past 6 years has transformed our lives and especially our walk with God. Biblical concepts that seemed so simple have come to life before our very eyes as we navigate the painful parts of faith.

I can’t imagine a life without him.

But I also have to remember that all that we are given in this life is not ours to claim.

The night he was born will forever be etched into my mind. There are certain details that I will never be able to unsee. But as we raced to the operating room and I watched those ceiling tiles whiz over my head I prayed the words of Job over and over again: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”

I don’t know why those exact words came out. I just remember wanting so desperately to plead for Malachi’s life, but also wanting God to know that I trusted Him fully.

Those words have been playing in my mind this week as I think about life with Malachi. Every day that we get to spend with him is a gift from God. I pray that my heart always remembers these words and when that time does come for Malachi to claim his heavenly healing that I will be able to say with my whole heart “Blessed be the name of the Lord.”

Jake heads back to work tomorrow and our chaos resumes! This momma is headed to bed.

Much love,

Leah

 

 

Painful Roots

I had to look through my photo album to try and remember what all we crammed into this week!

We rocked out some therapy sessions. Levi has a hard time understanding when his therapy session is over and brother’s begins. He tends to get very jealous that they are working with Malachi instead of him and tries to join in on the fun.

img_0504img_0495-1img_0490-1

We went to the apple orchard with our Chick-Fil-A buddies. We don’t get to meet up very often but it is always fun to spend time with those sweet children. Both Malachi and Levi thoroughly enjoyed the hayride through the apple orchard.

img_0678

img_0673

I was barely pregnant with Levi when the infamous Chick-Fil-A encounter happened which led to the viral post. So it is wild to see how much our families keep changing!

img_0686img_0683

We ate chicken in parking lots in between appointments. I know that sounds like a weird sentence. But most days we have an hour or so to kill in between appointments and getting the boys out is getting more difficult now that Levi is so mobile. So we find a quiet parking lot and I let Levi join me in the front seat to get some wiggles out and get a few bites of food.

img_0533img_0530

 

We all four got our flu shots! Our local pharmacy is absolutely amazing and they come out to the car for our shots so I don’t have to get Malachi’s chair out.

Levi was too young to get his at the pharmacy so we made the drive to his pediatrician in Chattanooga. This was his first ever flu shot which made me a nervous wreck- the last time he had a vaccination he went into respiratory distress and had to be put on 6 liters of oxygen. Thankfully he managed this one well.

While I am very respectful of others opinions about vaccinations, in our world it is a very black and white, life or death issue that we don’t feel like we should negotiate on. When you become a medical momma you are forced into a world where you have to choose a lesser of two evils…we have to prioritize LIFE over all else.

img_0722

Levi managed to sprain his ankle on Friday morning which led to a bonus trip to the pediatrician and x-rays. He wasn’t able to put pressure on it for a bit and would fall every few attempted steps so we were concerned he had fractured his ankle but the images showed no break! He has cried several times over the last few days and held his foot so I know it is still hurting but there isn’t much you can do for a sprain other than Tylenol.

He spent a solid day and a half walking like this on the inside of his foot, which in turn caused him to fall over frequently in pain.

img_0708

The weather is finally changing here in Tennessee and oh boy are we loving it! The fall days tend to be more overcast so Malachi can comfortably spend time outside without trying to dodge the sunlight. Look at all that eye contact!!! He is such a beautiful child.

img_0569

img_0549 Plus now the bears seem to be in hibernation making me much less nervous about letting Levi play on the front porch and in the driveway!

Malachi’s body temperature issues have leveled out but his new wake up time has yet to be determined. We were all over the map this week, some days waking up at 3am and other days waking up at 5am. We obviously are crossing our fingers for him to settle on a late hour!

Speaking of late nights, we have had several with both boys this weekend. In addition to Levi’s sprained ankle he seems to have a slight postnasal drip. Since his airway is very sensitive any drainage back in his throat makes him immediately vomit. We run him on continuous feeds for 8 hours at night and for the last two nights he has been getting up around 4am and projectile vomiting.

On Saturday I attempted a trip to the grocery store with the boys and made it down two aisles before Levi projectile vomited all over the floor. I was trying to use the cart and Malachi’s wheelchair to block the puddle while holding a vomit covered Levi. Thankfully someone in the aisle offered to go to customer service for me and they brought some cleaning supplies. Never a dull moment!

So as a back up plan we are carrying a towel everywhere we go and only feeding Levi small amounts more often than normal. There are no other signs or symptoms in any of us or Levi other than his vomiting which leads us to confidently believe it is an airway reaction and not a virus.

img_0620-1

Levi has started using his imagination a lot and loves pretending that everything is a phone. He always answers it “Hey Dada”and proceeds to have a pretty intense conversation. He hands the phone to me but gets very frustrated when I don’t say the right persons name who is on the “other line”. Silly boy.

Levi is developing a little attitude and it has shocked both Jake and I in a humorous way. For example, one day this week he turned to Malachi and said “I love you” then walked off. I was touched by the sweetness of the moment and said “You love Malachi?” and Levi turned around with a sassy attitude and an eye roll and replied “I just said that.”

He is also picking up some new dance moves. Here is an updated dancing video for you:

Malachi loves Levi but sometimes needs some space (totally relatable, kid). We have been putting him in his activity chair out of Levi’s reach.

img_0608-1

I took this silly video for you and you can just see how happy Malachi is to play with a toy all by himself:

Jake is on fall break this week and we are planning to tackle some big projects around the house. We also have some fun things planned, like painting pumpkins and maybe a trip to the zoo. Malachi has been excited all weekend about extra time with daddy!

Levi is going through a mommy stage and will scream for at least 45 minutes if I leave the house. He is afraid I will leave him if I get out of his sight so he is following me everywhere I turn. I am really hoping this week will help ease that situation as Jake will be staying home with the boys when I go to work.

I’m not going to lie here- this week has been exhausting. There were days I was running on just 3 hours of sleep and trying to whittle down a to-do list that continued to grow. On days like those it is very VERY difficult to show the light of Jesus to people. It is hard to find empathy for others when my day is so chaotic and miserable. We spend hours in waiting rooms each week, hours in the car driving to and from appointments. There is so much unpredictability and when someone adds chaos to my chaos I tend to get angry.

But I have to keep reminding myself that even in these stressful moments, God is refining me. He is bringing my impurities to the surface, the ugly parts of my character, and He desires to scrape those out of my life.

When we are a child of God we need to be okay with the uncomfortable feeling of being refined. We need to be okay with God pointing out our ugly, knowing that His goal is for us to be a reflection of Him…something we can’t do well when we smear our innate ugliness on that mirror that He wants us to be.

James 1:2-4

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

I tend to forget that there is purpose in pain. I forget that in order to really, truly grow I have to develop roots that painfully work their way into the soil but concrete me into that garden of Christ. And once those roots are established I can start to bloom where He has planted me. I can start to display the beauty of the Creator.

But we also must remember that sometimes God uproots us out of our comfortable, established plot of land and tries to plant us in a new garden. Those roots have to be re-established, an uncomfortable but necessary process for us to flourish in our new God-chosen spot.

I pray that my heart always stays soft enough to be uprooted and re-planted, as many times as He requires, and count it all joy each and every time.

This momma is headed to bed! Much love to all of you.

Leah

 

 

Wings & Endurance

I haven’t done a medical update for you in quite awhile so I figured we would kick off with a few updates on each of the boys.

Levi is always the “less complicated” one so let’s start with him. His vocal cords are still very much paralyzed but right now the piece of rib in his vocal cords still seems to be allowing him to breathe safely. At night he will have a desaturation a few times a week but self recovers without me having to touch him. We still keep him hooked to his machines at night so we can keep a close watch on his oxygen levels and heart rate.

He isn’t scheduled for another Cincinnati trip/surgery until June which is amazing! He will be put under anesthesia the day after Christmas for an MRI so we can see if the spots of brain damage have changed since his last MRI. This is being ordered by his neurologist and will give us  a better picture of what impairments we might be looking at. Although he is catching up with his milestones there are several red flags that still indicate that Levi may get a cerebral palsy diagnosis due to some low tone in his legs and core. They typically don’t formally label a child with CP until after their 2nd birthday.

Levi will also have another dreaded sleep study a few days before Christmas to make sure he is still safe to sleep without oxygen. He will still have his routine specialist appointments with neurology, pulmonology, gastrentergology, and the eye doctor but at this point there are no major changes with his care in those departments. He is also getting weekly feeding therapy and physical therapy. He is down to only taking one dose of medicine a day to help control his reflux.

Levi has been fascinated with his g-tube lately which makes me a nervous wreck. He is so sneaky about it too, reaching down the front of his onesie when we aren’t looking. One of my personal goals is getting him to take enough calories by mouth to eliminate having to do any daytime feeds through his tube. We are very far from that goal, but he is making progress. He is even able to eat an entire french fry without choking which is wild!

He is trying to figure out how to run which has made life a little more interesting haha. He is one fast little rascal! And he is mastering this whole temper tantrum thing which to be honest is a bit hard to not laugh at sometimes. That boy could win an oscar award for his performances.

img_0355-2

Jake and I were talking today about how much chaos he has added into our lives, but how wonderfully that chaos and normalcy feels. We can’t imagine life any other way.

Like a sour patch kid, he also has a sweet side and says “I wuv you” to me unprompted at least a dozen times a day. He also pretends that everything is a phone and calls his daddy on it. This morning he was acting up in church and when I turned to get onto him he quickly folded his hands and closed his eyes to pretend like he was praying, trying to get out of whatever lecture he was about to receive.

And just in case you hadn’t already figured out that Levi is a spitting image of his daddy, here is a side by side comparison for your enjoyment:

img_0185-1

Malachi has been so healthy this year, which is something we are confident God has orchestrated. We haven’t had any surprise hospitalizations for him in over a year as his sicknesses have been able to be managed at home. His immune system is still a little wonky so we are still cautious around germs.

Malachi doesn’t have any surgeries or big procedures on the horizon. He has routine appointments with neurology, neurosurgery, gastroenterology, orthopedics, and dentist. Each week for he has feeding therapy, physical therapy, speech therapy, occupational therapy and hippotherapy.

Malachi is taking 7 doses of medication per day, five of those being seizure meds. After his recent neuro appointment we increased his CBD medication a bit to try to control the seizures a bit more. He is down to having about two a day, and the CBD oil increase seems to be helping decrease their severity. We still carry a rescue medication for him in case his seizures last longer than 3-5 minutes but most of his are currently lasting under a minute.

We watch Malachi very closely for any changes since he can’t verbally communicate issues to us. We have to know every detail about him so we can spot a change quickly. When the seasons change sometimes he has a hard time adjusting, so this week he has been dropping his temperatures a little too low at night (just under 97 degrees). When I get him out of bed he is ice cold and it takes at least an hour to get his body temp back to a safe spot.

We had some bloodwork done last week to check his kidney function, something that can be affected by his medications and diet. Some of his medications make him more prone to develop kidney stones so he typically has a lot of debris in his urine. All of his tests came back great though!

Since we increased Malachi’s CBD oil we are noticing him trying to visually see things more. I know I say this a lot, but just in case you are new to the blog: Malachi has something called corticol visual impairment which means his eyes are structurally fine but his brain prevents him from seeing. He has certain settings that you can tell he sees better in (like low and natural light) but he has been trying really hard to look at things this week, regardless of the setting.

img_0251-1

I snapped this photo earlier this week at a soccer game and it gave me chills to see him looking at me. Beautiful boy.

Malachi broke his 4:04 wake up streak PRAISE THE LORD! He seems to be settling on 5:18 but time will tell. It really is fascinating how his little brain works.

img_0199-1

Malachi’s school picture

Malachi’s classmates haven’t been healthy so I kept him home with me for most of the week. I work on Mondays, Wednesdays, and Fridays and obviously both boys came along. The older Levi gets the more difficult it is for me to keep him content sitting in the office. He loves sitting with Malachi and this week I caught him helping Malachi play the keyboard. He held his hand and used it to push down on the keys for Malachi. It was just so sweet.

img_0286

img_0173

Levi loves to open and empty every drawer he can gets his hands on…the copier, the desk, the bookshelf…. By the time Friday rolled around I was mentally exhausted from chasing him around the office and keeping him out of dangerous situations. In an effort to keep him entertained I tracked down a used play kitchen this weekend and filled its drawers with pretend food and dishes. I am crossing my fingers and hoping this is the answer but I am little afraid to get my hopes up. Tomorrow will be the big test!

This week we are hoping to knock out flu shots for all of us. On Malachi’s first birthday he contracted the flu and we almost lost him. We spent two weeks in the ICU battling pneumonia, so for us shots are a must.

There is also a chance that we will get to see our Chick-Fil-A buddies this week at the apple orchard!

Speaking of Malachi’s viral Chick-Fil-A post, a few months ago we were contacted to do a podcast interview about the incident. We conducted the interview via phone on the way home from Cincinnati and it aired this week. Here is the link if you are new to our story and have any desire to listen: https://speaking4him.sermon.net/main/main/21460542

I know I have mentioned this before, but we recently moved our Sunday night youth Bible study from the church to our home each week. We were hoping the atmosphere change would bring more of our youth group teens out on a consistent basis. We also bribe them with lots of food haha. Side note- while it is a ton of work, it really has brought me joy to start cooking for crowds again. And it is so important that the teens know that we love them, and as silly as it sounds food seems to be their love language.

God has been multiplying the numbers each week and we are getting 25-35 teenagers out to study the word of God. GOD IS SO GOOD!

We split the group up and the guys go downstairs with Jake and the girls stay upstairs with me. A few weeks ago I felt a prompting from God that we needed to teach them how to truly study the word of God. Our modern world tries to teach them the the Bible is outdated and full of contradictions; that it isn’t reliable. But I feel so strongly that the Word of God is living and active, sharper than any two-edged sword.

So we changed gears and I give them each a printed out chapter (the message version since it is the easiest for them to understand) and a highlighter. They each read the chapter and mark anything that sticks out to them, confuses them, or pricks their spirit and then we have an open dialogue about each paragraph.

I can’t explain the joy I feel when I get to discuss scriptures with these young women and hear their unique perspectives. There is just something about studying the Bible with other believers that is so special. There is no age distinction when talking about God with another sister in Christ, but how often do we limit our spiritual conversations to people our own age?

Tonight we got to a verse that led to a discussion about the common belief: “God won’t give you anything you can’t handle.” I told the girls that this was not true and by their reactions you would have thought that I slapped their mommas.

They were confident that there was a verse in the Bible that said this very phrase, but the closest verse is found in 1 Corinthians where it says that God will not allow us to be tempted beyond what we can bear without an escape already in place.

They told me that believing this phrase had always brought them comfort and when they are faced with something big and say this quote and it gives them the courage to embrace it head on.

I explained that while that mindset works for them in most situations now, there is going to be a moment in their lives where something comes along that they can’t handle on their own. Even the biggest dose of courage and wishful thinking won’t help them overcome it.

At some point in our lives we will all experience true helplessness. A moment where you feel like you are drowning and there is no foreseeable backup plan to turn to.  There will be a moment in your life where your only option is to lift your hands to God and call upon His name.

When we believe that God won’t give us anything we can’t handle we accept this master/slave view of God rather than seeing the potential for a true RELATIONSHIP with the Father. God wants to DO life WITH us. Not just write out a chore chart and check the list for completion.

While God doesn’t rejoice over our brokenness, He loves to meet us there as we rest in His embrace.

So yes, we will be given things that we can’t handle. There will be things in your life that are too much for you to process, too much to physically take on, too much to bear.

“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

But did you catch those early words: “But those who hope in the Lord…”

When we are faced with a hopeless situation beyond what we can “handle” we are called to put our hope in the Lord and expect Him to give us wings to fly and endurance to complete the journey.

We have seen this firsthand on our parenting journey. We have watched God sustain us physically, mentally, financially when we have been stretched beyond what we can bear. We have watched Him preserve our marriage and allow Jake and I to be one mind and one soul.

We have been broken, but God has always met us in our brokenness. He has been our rescuer, our redeemer.

So my challenge this week is for us all to stop letting our pride get in the way of our relationship with God. What in your life has become too much for you to handle? Instead of repeating the lie over and over again that you can handle it alone, why don’t you try taking the road block to God?

Instead of seeing your inability to fix something as a negative, start to see it as the beautiful thing that draws you closer to the Lord.

God bless you all this week and thank you for checking in on our family.

Leah

 

 

 

The Throne Room

Let’s start off with a video that I keep watching over and over again in amazement…right before I started filming I asked Levi “Who do you love?” Let’s see if you can understand his response:

Levi, the boy with paralyzed vocal cords is speaking clearly and loudly!!! He said “I love my dad alot alot.” When they first gave us his diagnosis when he was one week old they warned us that he would likely not have a voice, and if he did it would be very quiet.

God is so good!

The jealousy bug has infested our house. If anyone or anything is stealing my attention away from Levi he is sure to make his presence known.

img_0023

Malachi actually thinks it is funny to hear Levi whine so he encourages the jealousy in his own silent way, making sure to steal lots of kisses when he is sitting with me and Levi is watching close by.

We had a week packed with appointments and Tuesday was our full day. At 11:30 the night before Malachi was still wide awake so I did what all good parents do and I bribed him. I told him that if he went to bed and slept until the sun came up that I would take him for pancakes. He has still been locked in on the 4:04am wake up time and I knew I wouldn’t survive Tuesday’s long day with the tiny chunk of sleep. I explained to him that if he woke up and couldn’t see the light that he needed to be a big boy and close his eyes again.

Jake laughed at my bribe and rolled his eyes. But Malachi stayed asleep until 5:45!! When I went in to get him out of bed after he woke up he was giddy and squealing with excitement. The sun wasn’t technically up but he knew he had lasted longer than normal so we still sprung for pancakes with lots of butter and syrup. Side note- no one warned me how nasty toddlers can get when dealing with syrup. YUCK!

img_0034

Our regular therapist is out of town but thankfully the woman taking her place is Malachi’s hippotherapist and both the boys know and love her.

img_0020

img_0021

img_0012

We knocked out a few more soccer games.

img_0140

And I played with a new phone camera a bit and got some sweet pictures of the kids.

img_0069

img_0125

And one of dad just for the fun of it!

img_0048

Jake and I are what the youth group teens call “old school”. We use things until they stop working, regardless of how uncool or outdated they may be. I have been using a very old iphone for years but it still worked just fine so I didn’t see a need to swap it out. But over the last two weeks it has been declining FAST, and this week it met it’s end and had to be replaced. But I will say that the photo quality is such a nice upgrade!

Levi has been working on trying new foods and has really enjoyed playing with fruit. We got him to suck on an apple slice which is big considering his oral aversions!

img_6816

This weekend I had the privilege of attending a ladies conference in Alabama with a group of women from my church. Aside from the youth group lock-ins, I do not spend the night away from the boys.

Like any trip, it had positives and negatives. Some people from our group had to back out at the last minute leaving we with a room all to myself! It was so nice to just alone in a room, as crazy as that sounds. I really enjoyed getting the chance to spend quality time with my church friends and get to know some of the new ladies that came along.

It was also refreshing to be able to be spiritually fed. Since we are on staff at our church, almost every service time we are expected to be doing something with the youth. Sunday mornings during service is our time to get spiritually challenged but with Levi’s attention span I can’t stay in the service. I listen to it over the speaker in the lobby but get easily distracted so the focused God time was appreciated.

As for the negatives, I forgot how big crowds freak me out. There are so many germs floating around the room and since it was a ladies conference they would stop and do meet and greets way more than normal. My friends understood my germ fears and were respectful but not before a few strangers leaned in for some big bear hugs AHHHH.

While having a hotel room to myself for a night was wonderful in so many ways, it gave me a few PTSD flashbacks that I didn’t see coming. When I laid my head on my pillow and closed my eyes I automatically drifted to the memory of the night Levi was born. Jake had to take Malachi back to the house and I was alone. Levi had already been transferred to another hospital and I was spending the night without either of my children. I remember the tears coming as I heard other moms in the rooms next to me talking excitedly about their crying baby. And there I was, alone with a fresh surgery scar and no baby to show for it. That feeling of disappointment and desperation is something that I will never forget and hit me like a wave this weekend.

But it truly was wonderful to get away for a bit and take a deep breath. I am thankful that Jake was willing and able to keep the kids so I could focus on God.

img_0156

I really thought I could do it this week. I was so hopeful that I could successfully go to the eye doctor with Levi and not cry a single tear. But once you have attached an emotion to a particular place and building, it makes it harder to sever those habits.

I gave myself a quick pep talk and wheeled the boys in for the appointment. I think the devil saw my confidence and decided to attack in the waiting room. As I looked around at the other families waiting for their turn I noticed that literally every child in there had a support group with them….both parents, some even also had grandparents….and I started to feel sorry for myself (oh the stinking devil is quick to attack).

Between the two boys we have too many appointments for Jake to even consider taking a day off to attend each one. We are very protective of taking unnecessary days off just in case there is a medical emergency that might take him out of the classroom for weeks.

I could ask grandparents or friends to come along, but to be completely truthful that adds a different stress element to the day. We live so minute to minute and many appointment days cause me to be a stressful bundle of nerves. Adding another adult personality into the mix isn’t worth it from a mental sanity perspective. My decision, but for some reason I was still jealous of all these other eye appointment families/cheerleaders.

The appointment itself went well with no further bad news or surgeries needed. He said that the patching we have been fighting Levi to do seems to be helping but we are looking at having to do two hours of patching daily for the next several years. Hearing all of those facts again set me into that dark place I hate to go to.

I was fighting back tears for the second half of the appointment and when I made it to the car I unleashed those bottled up emotions. I cried as we drove home, mourning over the motherhood picture I was yet again having to modify.

I spend a lot of time each week in the car. Our specialist appointments are all an hour away and our therapies are a thirty minute drive each way. I spend every second of the drive listening to worship music and singing at the top of my lungs.

As I drove down the highway, tears streaming down my face, a song came on that I had heard many times before. But this time was different.

The song is called “Nothing Else” by Cody Carnes and the first line was like a reset button for my hurting heart:

I’m caught up in Your presence
I just want to sit here at Your feet
I’m caught up in this holy moment
I never want to leave
Oh, I’m not here for blessings
Jesus, You don’t owe me anything
More than anything that You can do
I just want You
I had such a visual of me sitting at the feet of God with my tears landing on His feet.
I have visualized this scene so many times, and each time before I have been begging God for something. For Malachi’s life to be spared, for Levi’s healing, for answers, for courage.
But this time was different. I just needed a place to land and mourn. I needed a safe place to let the tears flow. And as I entered that throne room of God I felt his presence. I didn’t want to ask Him for anything, but simply craved being in the presence of someone that understood my struggles and my challenges.
Hebrews 4:16 says “Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Why is it that I wait for a total breakdown to enter into God’s presence? Why is it that I wait until I need to beg for miracles before I go into the throne room of God?
Like the song states: I’m not here for blessings. Jesus, you don’t owe me anything.I just want You.
I have been personally challenged to enter with the confidence that Hebrews refers to. I know my God is a good God. I know He longs to hear my fears, disappointments, and desperation. And He longs to offer his grace to me in those moments.
But my pride gets in the way and keeps me from entering into His presence as much as I should. I use it as a last resort rather than a first reaction….like somehow God’s grace for me is already portioned out and might be wasted on situations that are fixable by me.
So I am praying for more throne room moments. I am praying for more confidence. I am praying that when my heart is hurting I can remember that His grace, His free and beautiful grace is more than enough for me.
I am literally going cross eyed- I wish I had a hidden camera on me so you all could laugh with me at the number of times I have had to jerk my head up and delete a string of nonsense my fingers have typed while I slept. The kids are officially asleep so I am heading that way, but thank you for taking the time to read up on my boys.
Much love,
Leah

 

 

 

The Unseen

This week I had a moment…

img_6733

On Thursday morning as I took my 45 second shower and prepped the boys for their day of appointments, I stared at my closet looking for something to wear. We would be at the hospital so it had to hit all the marks on the hospital outfit checklist…no laces that might drag on the ground, soles of the shoes had to be able to be sanitized, comfortable, dark colored shirt in case of a needed blood draw on one of the boys, dark colored leggings in case one of the boys had an accident that made its way onto me (a freakishly common occurrence).

I was in a mood. A negative, cranky mood and I knew I needed to catch that attitude before it made its way out of the house. I reached for one of my shirts with scripture on it as a way to hold myself accountable to act right.

The appointment was a routine one with the gastroenterologist. It is one of the only specialists that the boys share, which makes life a little bit easier. We went through triage with the nurse, getting the boys heights, weights, and updating background information.

I had popped out of my mood for the most part, but when she started reading the list of surgeries for Levi I felt myself slip right back into that darkness. I nodded with each surgery mentioned…all two dozen of them. Then she started the list for Malachi and I slipped even further into the darkness as I flashed back to the scary moments that surrounded most of those 15ish surgeries. Brain surgeries, heart surgeries, stomach surgeries…

As I listened to that list I just felt like such a failure of a mother. Why do my beautiful children BOTH have to suffer so much? Why can’t I fix them?

I had one of those special needs mom moments where you just feel like you aren’t enough. I would like to blame the devil for those thoughts, but in reality they stem from being told time and time again by specialists that I am not doing “enough”.

The doctor came in and we had a decent appointment. At the end of the appointment I asked the doctor: “So what are you going to tell me I should be doing that I am not doing?”

He glanced up from his computer and said, “Actually I am happy with how they are progressing. Keep doing exactly what you are doing.”

In my world comments like that one are rare. Every single appointment and therapy that we go to I leave with a list of things that I should be doing each day. The list is so long that it is unattainable. If I spent all of my focus on that list I don’t know that I could meet its expectations. So each day I have to choose to live minute by minute and do the best that I possibly can for each of them.

I felt my emotions starting to waver with his words of affirmation. Some days that rising water just sits a little too high on my neck.

We tackled 9 appointments this week, 5 of them falling on Tuesday. This week we will have 7 appointments including a trip back to the dreaded eye doctor. Malachi will also see his epileptologist.

This may be too much information, but Malachi’s urine has started to smell strongly over the last few days, which usually means something is brewing in his kidneys. Sometimes it means a urinary tract infection, other times it can be debris building up in his kidneys and trying to form stones. I am watching him closely to see what steps we need to take next. We hate to overreact and take him in for a urine sample (they usually have to use a catheter for that) but don’t want to under-react and allow him the opportunity to develop sepsis.

Levi has been extremely congested since Friday; we are hoping allergies are to blame. He is pretty pitiful but his oxygen levels have been staying up. He is breathing louder than normal so you can tell there is definitely some constriction in his airway but it isn’t to a dangerous level yet.

Let’s talk about some of the highlights of our week!

Levi has started dancing and it might be the cutest and funniest thing I have ever seen. I took a very short video for you:

Jake and I do not dance and have zero rhythm so we truly don’t know where he learned how to do this. I have watched that clip at least a hundred times and laughed and laughed.

Levi is also learning how to wave goodbye, but it is still a work in progress. Here is a clip:

Malachi has been pulling some late nights with momma. He is still waking up at 4:04 on the dot, but he is staying up later as well. We were hanging out in the living room one night this week and I noticed that he was really looking at me. In the low light of the room he was able to see me well. It is always so encouraging to see improvements with his eyes. You never realize how special eye contact truly is until you have a child that can’t easily give it to you.

img_6742

Malachi is still absolutely smitten with baby Levi, and the feelings are mutual. We have to keep an eye on Levi because he assumes that Malachi wants to do whatever he is doing and tries to get him involved. Levi is quite the handful these days and drags whatever he can find and carries it all over the house. This afternoon he sneaked up onto Malachi’s lap to show him the can of pumpkin he had snagged from the pantry. When I turned the corner he had gently placed it on top of Malachi’s head like a hat. Malachi loves the randomness and their bond is just heart warming.

img_6675img_6674

Looking at that chubby belly reminds me to tell you that Malachi is 31 pounds now! Before baby Levi was born Malachi was 40 pounds, and he dropped down to 25 pounds while we were in the NICU in Ohio trying to manage the care of both boys. It devastated me to see such huge physical changes that were a direct result of me not being able to be mom to both boys each day. He has started to put that weight back on and we are seeing some meat on his bones.

Levi has been fascinated with Malachi’s wheelchair so we have been letting him drive it, much to Malachi’s delight.

img_6709

Levi is going through a very jealous stage and oh boy is it wearing this momma out. Anything or anyone else that competes with my attention is unacceptable to his little one year old brain. We are dealing with a lot of meltdowns and temper tantrums, which we in turn combat with lots of sitting on mom’s lap and hugs and kisses.

At one of the soccer games this week we were having one such moment and a friend snapped this picture of me trying to help Levi calm down:

img_2054

But I love that sweet little annoying boy with all my heart!

img_2057

He has also started walking around like a major general with his hands tucked behind his back. We have no idea where this habit came from but it is awfully cute.

img_6728

He had a fun morning with his buddies at church this morning.

img_6760-1

Since we end up spending a lot of weird hours awake with Malachi, Jake and I both record several different television shows to keep us awake and help pass the time. I have been so disgusted lately at the content of the television shows and commercials that air so I revert back to the old fashioned shows like Little House on the Prairie and The Waltons. Jake sticks with history channel shows. But we have a few favorites that intersect, like Jeopardy and America’s Got Talent.

This week was the season finale of America’s Got Talent, a talent show that features a variety of performers. The performers go through several rounds and the rounds at the end of the series are voted on by viewers. It is easy to get invested into the contestants and their stories.

But one particular one this season really hit a special nerve for both Jake and I. There was a man named Kodi Lee, a blind and autistic 22 year old singer who also plays the piano. We watched week after week as he was voted through to the next round. And each time he did a new performance you got to see a little bit more of his personality and spirit shine through.

Since Kodi is blind he relied on his mother to walk him out onto the stage each performance and I couldn’t help but be drawn to her. I watched her more closely than I watched Kodi and I felt such a connection to her, especially in the way she looked at her son. There was such a bond between them, a connection that is shared between a son that is locked in his brain/body and his mother.

I saw myself in her eyes.

I have so much pride overflowing in my heart for Malachi. He may not achieve the world’s milestones for a six year old, but he is amazingly special, talented, and intelligent. He is one of a kind. I wish the world could know my Malachi the way that I do. I wish they could see the boy that I see.

Spoiler alert- Kodi Lee ended up winning America’s Got Talent. As they announced him as the winner I watched his mom, even getting emotional at the victory that was taking place. Not only was her son recognized for his above average talent at singing and playing the piano, but voters had looked past his “can’ts” and fallen in love with this young man.

img_6749

I saw the emotion overcome her face as she watched her son simply be seen and valued for the unique person he is.

img_6752

Oh how my heart connected with hers.

I don’t know why God has chosen me for the task of being a mother to two very special boys. But when I look into the eyes of Malachi I see the love of Jesus and I know that this is right where I am meant to be.

I am not enough for them. I will not ever be enough. But I believe that God stands in those gaps with His overflowing grace and mercy. He carries all of us in the palm of His hand.

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

This week I am choosing to fix my eyes on the eternal unseen. And I pray that God continues to renew me day by day as He has promised.

I pray also that the world continues to look into the eyes of my Malachi, and others like him, and see the beautiful and valuable creation that he is. I pray that Malachi continues to tell people about the love of God without ever having to speak an intelligible word. And I thank God that He has given me the privilege to be a part of his story.

May we always focus on the unseen.

Much love,

Leah

Unstained

Let me just take a few moments and brag on my sweet Malachi.

img_6496-1

Malachi is intelligent, opinionated, and so unique. When people take the time to get to know him they see what a normal little boy he truly is inside. He is mischievous beyond belief and has a very tender heart.

As I have told you before, watching people truly SEE him is one of the best feelings in the world. But with the addition of Levi into our chaotic world I have been guilty of not giving Malachi the opportunity to “talk” to me and give him a voice.

This week I have been trying to be a more conscientious mother and take the extra time to give Malachi more choices in his day. I always want him to know that I see him and value his opinion.

img_6499-1

Malachi has been so excited this week at all the choices he has been getting to make. We do the typical clothing options, food options, and toy options but I want to let him make bigger decisions too. One night this week as we got ready for bed I asked Malachi if he wanted to sleep in the big bed with mom and dad like he usually does and he quickly signed NO. This caught me off guard as he has been sleeping in the bed with us since we came home from the NICU with Levi last March. We had been sharing the bed at the Ronald McDonald House together and it just became a habit. It never occurred to me to offer him another option.

So I asked him if he wanted to sleep in his own room by himself and he squealed while signing YES YES YES!  Each night this week he has chosen to sleep in his own room again, and we have made sure to celebrate his big boy decisions each night.

img_6536-2

In true Malachi fashion, his brain has been locked in on a new time to wake up each morning. This round he is stuck on 4:04 and stays up until about 6:00. His brain fascinates me so much.

Both of the boys have been amazingly flexible this week with our chaotic schedule. We had 5 soccer games in 6 days, 6 medical appointments, and lots of activities with the youth group.

Jake and I are pretty good at switching out our hats for each of the roles we play, but this week we had a lot of overlap so we had to divide and conquer. Saturday morning Jake had to get 21 soccer girls to a tournament and I had to get 16 of our youth group teens + my own kids to the local food bank to fill food bags. Yes, I could have easily found someone to go in my place and supervise the teens but we feel so strongly that the kids need to see examples of choosing to serve over the more entertaining aspects of life.

img_6584-2

As you can also see, Malachi got a haircut this week. But back to the food bank, Levi became the self proclaimed supervisor, distracting them as much as possible haha.

img_6567-2

Afterward we headed to the field to catch the rest of the soccer game. I took a ton of photos this week at the games and couldn’t decide which ones to post so you get to see them all! Levi manages to get filthy at each and every one- I think he just wants to guarantee that he will get to stay up later to get a bath each night…he loves his bath time.

img_6467-1

img_6508-1

img_6460-1img_6474-1img_6476-1img_6560-2

Malachi’s wild raptor has been such a blessing this week as it gives him an easy way to get from the car to the field and also provides a comfortable place for him to sit during the game.

Side note- the group that modified Malachi’s ride created something called “The Malachi Movement” and are now adapting these for special needs children all over the United States! They are currently working on some for three local families who happen to be buddies of ours through the special needs world, and I can’t wait to see the smiles on their faces.

Levi has been so active lately, running everywhere he can. He is completely done with the whole crawling concept and never stops. As he becomes more active we are starting to hear his stridor come back, which is a reality check to me that we are still in need of a miracle. I have caught my heart mourning a few times this week as I watch him with a soccer ball and realize that sports might not ever be in his future. If his vocal cords don’t wake up, doing anything active that could restrict his breathing can be life threatening for him.

Obviously I don’t care if he plays sports, but the idea of having to have that conversation with him one day makes me really sad. Life will already be different for him as we live our beautifully unique life with Malachi- I just crave some normalcy for him.

But Levi’s talking is improving each day! Tonight I put him to bed and said “I love you Levi” and he quickly responded “I love you too bye bye” as he laid his head down. Jake was in the room and we both looked at each other completely shocked to hear such a complete and appropriate sentence. To God be the glory!

img_6621-1

In a few weeks I will be going to a women’s conference with a group from my church that will require me to be away overnight. I have so much anxiety about those 30 hours. Jake is an excellent and capable father but there are so many things in our routine that have just always solely been on my to-do list.

In an effort to help ease some of the anxiety I have been having to put Jake through a boot camp of sorts making sure he knows where all of the medical items are what to do in case of emergency. On Saturday I had him swap out Malachi’s g-tube so he would know how to put one back in should one of theirs pop again. Malachi’s is easy to switch as he is still and calm. Levi decided to toss the challenge our way on Tuesday night and popped his out when it was unprotected during his bath time.

Getting his back in is at least a two man job but we managed to get it back in quickly. We will just pray Jake doesn’t have to deal with that emergency while I am gone!

The truth is, I am most anxious about bed time as Jake is a heavy sleeper. I am up and down with the boys several times a night, checking g-tubes, fiddling with pulse ox machines, un-kinking Levi’s tubing when the feeding pump alarms go off…on a typical night I am up 6-8 times between 11-4:04 when I wake up with Malachi for round one.

Malachi wakes up every single morning, no exceptions, with a tummy ache which quickly sparks seizures if you don’t address it. It takes at least an hour but more often two hours to get his stomach to a safe enough level for him to relax and maybe go back to sleep. That process is truly an art form haha.

I guess I just have to give those worries about the conference weekend to God and try to capitalize on the uninterrupted sleep…I am not so sure my body will recognize what to do!

This week God has showered our family with blessings. From little gestures to mind blowing generosity from strangers, we are reminded again and again that God is holding our family in the palm of His hand.

This week marks the one year anniversary of our buddy Johnny going to heaven in a motorcycle accident. As this week has approached I have found myself running a myriad of emotions. We have the privilege of being involved with his children’s lives and each time I look at them I can’t help but see Johnny.

img_6624

When we first met Johnny ten years ago he was a gruff and angry man. But as the years went on we watched a beautiful transformation happen within in. His anger melted away and God replaced it with such a beautiful spirit that drew you to him.

Johnny lived a radical life for God. He was uncompromising in his faith, especially over the last few years. He craved the gospel and spent time pouring over the words of Jesus- he would come over to the house and talk for hours about verses that pricked his heart. When you talked to him about God he had a unique fire in his eyes.

But there was one verse in particular that he locked in on and couldn’t ignore. I literally cannot read this verse without hearing it pour out of the mouth of Johnny, that’s how much he recited it.

James 1:27  Religion that is pure and undefiled before God the Father is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world.

This week I have been focused in on the word “unstained”. I can’t stop saying that line over and over again in my head.

Truth be told, Johnny’s life was far from unstained. Johnny had a past and he fought battles in which the world won. But we are never so stained that God turns away from us. The Holy Spirit continued to pursue Johnny’s stained heart and he allowed himself to be washed clean by the grace of God.

How often do we knowingly open our hearts to the stains of the world and welcome them to become a part of our lives? We even start to see our worldly stains as normal and acceptable, as we look around and see stained Christians all around us. We start to normalize and justify our stains instead of desiring for God to wash them away.

As children of God we are called to keep ourselves unstained. Is that even possible? Our sinful natures are continually drawing us to the things of this world, re-prioritizing God’s place in our lives. I dare say that it is impossible to remain unstained from this world.

So is this verse challenging us to something that we can never truly attain?

Regardless of our human efforts, the stains will continue to come. But the grace of God is so powerful that it can erase every stain from our lives, much like we saw in Johnny’s short life.

But here is the catch….

Do you see the stains? Do you hate the stains? Do you WANT to look different than the world?

God’s desire is that we stand out and look different than the world. His desire is that our countenance that is white as snow would be like a lighthouse for others who need to come and know Him. When we start to blend in with the world we lose that lighthouse effect.

My prayer this week is that God continues to give me the courage to pursue the unstained life. Yes, I will undoubtedly fail at remaining unstained, but the constant pursuit of that life is what pleases the Lord. I pray that God allows me to see my stains and washes me clean yet again with his unlimited grace and mercy. And I pray that God gives your heart the same desire.

Please pray with us this week for miracles. Pray for good reports for our upcoming appointments and safety as we travel back and forth to the hospital this week.

Much love,

Leah

 

 

 

 

 

 

 

 

Wounding Work

This week we dealt with the typical post-sickness battles with Malachi. While the head cold we passed around was very mild, the extra mucus that it created for Malachi set him into some intense seizures each day. He has something called Lennox Gaustat Syndrome (uncontrolled epilepsy) and is having 2-4 seizures on a good day, which is down from his 8-10 he was having daily before his CBD oil. He had a pretty massive 4 minute one on Thursday and I started considering administering his rescue meds, something I haven’t had to think about doing for quite some time. We carry them with us wherever we go and when we administer those we have to call 911 as it slows his respiratory rate down a little too much. Thankfully he popped out of it without any intervention. By Friday morning I felt like he was stable enough to try school for the day.

img_6406-2

A praise report though: Levi was the only one who didn’t catch the cold! That is such a blessing with his narrow airway and something that only the Lord could have orchestrated.

img_6426-1img_6417-1

We canceled all but two of our appointments this week, which was actually pretty refreshing. We get into such a monotonous routine sometimes with therapies and having a surprise break of getting to sit at the house and rest was much needed. To give you some perspective, we still have 29 appointments/therapies left for the month of September. Just process that number…our medical schedule alone gets so overwhelming.

Despite the down time, we still had a few adventures this week! On Friday evening I had taken a solo trip to the grocery store and pulled onto our road at 9pm. As I came up the hill I heard the camera alarm go off on the front porch and assumed it was Jake coming outside to help carry in the groceries. But when I glanced at the camera I saw another very long black bear meandering by the front door.

img_6379-1

When we built our house we designed the front porch to be an extension of the driveway so I could pull under the awning when it is raining to get Malachi out without getting wet. So I cautiously drove up to the front door and sprinted inside, asking Jake nicely to  carry in the bags of food. I just feel like we are constantly being watched by the bears in the woods. It is such a spooky feeling!

img_6387-1

Soccer is also in full swing- this week we have a game on Monday, Tuesday, Thursday, Friday and Saturday. That is insane! Malachi and Levi still love going to the games so we haul out lots of seating options for the kids, a small tent canopy, and enough snacks to keep Levi happy. By the end of the games Levi is usually filthy beyond recognition and exhausted which is a hidden bonus as he sleeps like a rock!

img_6320-1

On Saturday Jake, Malachi, and I went to a friend’s wedding. We were worried that Levi wouldn’t be quiet so when our buddy Tanner offered to sit at the house with him we gladly agreed. We talked the adventure up to Malachi explaining that only big boys got to go to this wedding…no babies were allowed! He felt like big stuff and was extremely well behaved. The ceremony was outside and he got overheated a bit. Interesting fact about Malachi: he doesn’t sweat so his temperature can get a little dangerous. But much to Jake and I’s surprise he was dripping with sweat after the ceremony, so much so that it saturated his hair! I know it sounds crazy, but I get excited when things like this happen as I wonder if his brain is rerouting connections like we always pray for.

img_1617-2

Levi has still been singing while he does just about anything. In fact, right now it is 11:00pm and he is laying in the crib next to me trying to fall asleep…just humming away. His speech is improving and he is adamant when he asks for something, like “Bubble” for Bubble Guppies. He has also been very eager to help with Malachi, like trying to put on his shoes and socks for him. He really has a sweet and tender heart. Here is another sweet video of him singing:

The mix of sleep deprivation and not feeling 100% took its toll on me and I found myself doing the most ding-batty things like putting the TV remote in the car. In addition to all of that, the fire extinguisher in the kitchen at the church had leaked all over the floor and as we investigated what the fluid was I managed to get some of it in me eye. It burned and kept me awake at night even though my body desperately desired the sleep.

This morning in Sunday School our teacher brought up a man named John Bunyan. I remembered the name from a book I read in High School called Pilgrim’s Progress but I didn’t know much of anything about him other than that.

John Bunyan was a preacher in the 1600s who was imprisoned for preaching the word of God, and during this time he wrote several books including Pilgrim’s Progress. He was given several opportunities to be freed if he would vow to stop preaching, but that was a vow his convictions never allowed him to make.

He had a wife and four children who clearly suffered during his time in prison from the lack of financial and emotional support from Bunyan.  One of his children was born blind, and after reading a bit about her you can tell that they had a very special bond.

Bunyan said: “O I saw in this condition I was a man who was pulling down his house upon the head of his Wife and Children; yet thought I, I must do it, I must do it.”

When I look at John’s life I see something that a lot of us choose to look past when it comes to our walk with God.

For true separation from the world and a concrete unity with God, there will be pain involved. Obedience to God’s calling on our lives requires self denial and the desire to pick up your cross and carry it joyfully, seeing the beauty in the sometimes painful journey.

In The Excellency of a Broken Heart he says, “Conversion is not the smooth, easy-going process some men seem to think . . . . It is wounding work, of course, this breaking of the hearts, but without wounding there is no saving.”

There is a wave happening in Christianity today where people choose to focus on the loving attributes of God and not the hard stuff that He asks of us…the obedience and the sacrifice. Our human nature likes to focus only on the things that make us happy and assume that God desperately wants us to be happy- we don’t REALLY want Him to exchange our heart for one like His. We want to pick and choose the things that we like about Christianity and go all in for just the easy, natural parts like loving our neighbors.

But as Bunyan states, conversion is wounding work.

Is your walk with God challenging? Is the Holy Spirit actively working in you, wounding you by cutting off the branches in us that don’t bear fruit?

If there isn’t a little bit of discomfort and pain within your walk with God, are you truly seeking God and asking Him to refine you? To heat you up in blazing fires, to send challenges into your life that bring your impurities to the surface where He can scrape off that dross and remove it from our lives?

I know this is some really intense stuff, but it is something that has been on my heart so much lately. What has it cost you to follow Jesus?

2 Corinthians 5:17 says “Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.”

Have you said goodbye to your old self? Or is one hand grasping desperately to your old self while God firmly holds your other hand that is reaching for Him, choosing to be caught between two worlds that aren’t meant to coexist.

Please join us in prayer this week that God would send us our miracles. Pray also that He continues to give Jake and I a strength that defies all reasoning, and patience specifically for me when my mind is weary and my boys are not.

Much love,

Leah

 

 

 

 

 

 

 

 

 

 

Memory Lane

This week I made a drive down to Chattanooga with the boys for a soccer game. As I drove through a town close to the hospital I had such an urge to shut my eyes, which obviously wasn’t doable as I was driving. It seemed like every few seconds was another spark for a flashback.

The H&R Block I used in 2013 when Malachi was still in the NICU for tax season. I remember being so bitter that I had to leave his bedside to do such a menial task. I was on the verge of tears during the appointment.

The Texas Roadhouse parking lot where I talked with my OBGYN about the night Levi was born, trying to figure out what we were missing- not realizing yet that his vocal cords were paralyzed. I have a vivid memory of staring down at my hospital bracelet that day…the NICU requires you to keep it on until discharge so it almost becomes a badge of shame as it reminds you that your baby isn’t like everyone else’s.

The Target that I went into the day I was discharged from the hospital after having Malachi- clueless about what to buy. I remember the cashier noticing the breastfeeding supplies I was buying and naturally asked if I had just had a baby. Her question was one I wasn’t ready to answer so I just cried and left the store. The drive down that same bumpy road caused me so much pain that day as I hadn’t ridden in a car since my emergency c-section.

The Wal-Mart Jake and I ran to when Malachi ended up in the ICU with the flu the year after he was born…pre-hospital bag days. We were still believing that our medical journey would end with a completely healthy child who overcame his prematurity. He fought hard and we almost lost him that week. It was a reality check week for our family.

Literally every few seconds I passed another memory. So I focused on the road right in front of me, hoping that the mental attack would stop. But as I focused on the road a low flying airplane passed right in front of me. That took me back to the night I was in the air ambulance with Levi, staring down at the lights of Chattanooga, filled with so much hope as we made our way to Cincinnati.

I thought about the Angel Flight that Jake was able to take to get to Cincinnati to bring Malachi, Levi, and I home for the first time in 5 months. I started smiling thinking about the wager I had with Jake that he would throw up on that flight. Thankfully for all involved, he did not.

As I made that drive on Thursday I ran the gamut of emotions, getting teary eyed several times at some of the harsher memories. But as I looked in the rearview mirror at sweet Malachi and wild-man Levi I couldn’t help but burst with gratitude that I get to share life with them.

Our story has been filled with horrible moments….some people are blessed to maybe have just one or two of those life altering moments in their lifetime. But for our family there are too many of them to count.

But as hard as our story has been, it could have ended up so differently.

I could have flashbacks to picking out headstones, or choosing outfits to bury my children in. I could have flashbacks to funeral days or those moments that doctors came in to deliver the news that my son had gone to be with Jesus.

But that isn’t our story. And my heart is so thankful, even when we deal with the messy.

Today I am blessed with two healthy, happy boys who love each other fiercely. Tomorrow may bring more hard memories, or more unpleasant things but for today we are simply living our uniquely blessed life.

We are thankful for every second that God gives us together on this side of heaven. It has been worth every memory, every fight, every hospital stay, every surgery, every tear.

Check out this photo from Levi just one year ago today and you will visibly see how far the Lord has brought our family!

Once we literally drove down memory lane and got to the soccer game I was able to take a deep breath. The boys love being on the sidelines with us. We have a new chair for Malachi to sit in so he doesn’t have to be in his hot wheelchair. And Levi likes to roam and play the role of assistant coach.

We knocked out six appointments this week but there aren’t too many updates from those.

Malachi loved his water therapy as always.

 

And Levi watched intently, working on his model poses poolside haha.

 

Levi has been working hard on his walking this week and is independently staggering long distances. This morning he was chasing after a girl so I grabbed the video camera to catch it on film for you.

Levi has also been so much more vocal lately! I took a video this week so you could hear his sentences. In this one he says “I said doo doo doo dooo…” and sings for you. You can hear his stridor as he struggles to catch his breath. We will be watching this closely to make sure he isn’t getting dangerous with his oxygen.

And of course, he has been thoroughly amused with the fart machine…here is a video:

A friend of ours was selling a giant bean bag couch so we snagged it hoping to give the boys a nice seat they could safely share. It is absolutely massive!

 

Levi is his typical ornery self. I worked four days at the office this week and he was not a fan of his play pen, even though it is essentially the same size as the office! He just doesn’t want to be told where to play so he screams at me to get him out, which I can’t always do. His new tactic is sticking his fingers into the back of his throat to make himself throw up, knowing that will get my attention. Oh boy! He also did this lovely new move in his car seat on the way back from Chattanooga.

We are finding all the places that aren’t baby proofed around our house. Levi is getting faster and stronger so we have to be on our toes 24/7. He is tall enough now to reach things on the table.

Here is a video of his sheepish door opening abilities:

Malachi was able to attend school three days this week. Sickness is starting to brew in the school system so it will be pretty spotty on which days he will be able to attend.

He has been enjoying life so much these days. He loves to just sit and listen to the world around him.

Speaking of sickness, with the weather changing there is something brewing in me. It could be allergies, it could be a head cold, but either way it has caused a full fledged sinus infection. Any sickness, even the smallest ones, puts us on edge as we watch the boys for signs and symptoms. So far they are both sickness free.

We had the youth group over to the house tonight, our new Sunday night tradition. I try to treat them the way I would have wanted to be treated at their age so we prepare a spread of foods for them and invite them to join us for dinner. You all know the chaos of our schedule…we rarely have time for dinner with just the four of us… but you also know my motto: If God calls you to do something He will never deplete you of the energy needed to accomplish it. If food will motivate them to come and study God’s word with us, then we don’t think twice! We have been exchanging Sunday afternoon naps for cooking, and I haven’t felt a negative difference so I think my motto is proving to be true.

I am doing a study with the girls about beauty and we are talking about the different aspects of the beauty the comes with knowing God. Tonight we studied a verse in Psalm 34.

“Taste and see that the Lord is good.”

Have you ever really processed this verse? How are we supposed to taste that God is good?

But what I think this verse is really aiming to help us realize the difference between knowing about God and truly knowing God.

I can tell you all day about what a cotton candy grape tastes like (yes, that is a real thing). I can describe the texture to you, paint a picture of what it looks like, vividly tell you what it feels like when one explodes between your teeth. I can tell you about the sweet flavor of the juices inside and compare it to other things you might have tasted in the past.

But until you taste one of those grapes you will never really know what it tastes like.

It is easy in Christianity to hear about other people’s God moments and feel that flutter in your heart. It is inspiring to hear testimonies of healings and transformations. But until you experience God, taste God, for yourself you can’t realize how amazing He truly is.

We talk to the youth over and over again about the difference between knowing ABOUT God and knowing God. Once you taste the goodness of God your life will be forever changed.

Is your faith in God based on others detailed descriptions? Is it based on a sermon you heard from a powerful preacher? Is your faith based on commentaries you read? Is it based on Bible stories you read about in God’s word? If so, I want to encourage you to truly TASTE the Lord and experience Him for yourself! Speak to Him and allow Him to speak back. Allow His Spirit to guide your heart.

When you have a relationship with God you will continue to see and taste His goodness. And let me tell you, it is way better than any description that someone might try to give you.

I am headed to bed, but want to thank you all again for checking in on our family each week. I got so many encouraging responses from last week’s post about the eye doctor and I am so grateful to have so many people looking for ways to lift us up. Please continue to pray with our family for more miracles.

 

Much love,

Leah

 

Shadow of Death

We are wrapping up another week of laughter and tears, calm and chaos. You never quite know what emotions each hour will bring!

We had our first soccer home game this week so we hauled the Wild Raptor for Malachi and the pickup truck for Levi!

img_5885

img_5903

The boys both genuinely love going out to the games each week. Levi has started clapping when the crowd claps and Malachi loves the variety of emotions the games bring out in the stands.

Levi had his follow up eye appointment with the surgeon on Monday, and once again I left the appointment and bawled in the parking lot. I have dealt with neurosurgeons, orthopedic surgeons, heart surgeons…lots of big surgeries and diagnoses. But for some reason these eye appointments seem to be my kryptonite. I always leave feeling like such a bad mother.

img_5844

Levi obviously didn’t cooperate with the eye exam after a very long two hour wait. We have surgically fixed the alignment of his eyes, a byproduct of his brain damage. But he has a secondary issue as well, a lazy eye (thanks genetics), that can’t be surgically corrected. The best treatment is patching the good eye and hoping the weak one will grow stronger. If it doesn’t improve the brain often shuts off vision to the bad eye causing blindness in that eye.

Now that Levi is stronger and much more opinionated he refuses to keep a patch on his face, not to mention any oxygen tubing. Everything gets ripped off in a hurry. When I explained this to the doctor he told me that Levi was likely one of those kids that would just have to be blind in one eye since we aren’t able to patch. He said other parents “just sit with the kid and keep them entertained for the 1-2 hours of patching each day”, which inadvertently made me feel like a bad parent for not being able to successfully do so.

Levi was all over the office during the appointment, trying to open every cabinet drawer and empty it’s contents all over the floor. I felt such judgment from the surgeon and nurses as they watched me chase after him. But they don’t understand that this sweet boy spent the first five months of his life trapped in a hospital bed. Seeing him get into everything he can reach makes my heart leap with joy.

As I left the office I just felt so discouraged. I am so incredibly tired of continually hearing that my boys are broken. I am so tired of discussing bad future outcomes, and things that will “likely” happen. I sat in the car and allowed myself a good 20 minute cry as I mourned over the things I can’t take from them.

We are going to try eye dilating drops in Levi’s good eye with the hopes it will make his weak eye stronger as it tries to focus on things. This will make him sensitive to sunlight and will have to be done every day for likely several years. It really isn’t a good solution either, but we are out of options.

By the time he reaches an age where I can reason with him and explain the patch he will already be too old for it to make a difference.

img_5986

Switching topics, we found this cool new stroller seat that connects to the back of a wheelchair! I haven’t tried connecting it yet but will see how successful it is later this week.

img_5970

On Wednesday nights in our youth group we usually end up with 25-35 teens, and Sunday evenings are much lower with maybe 10 kids. We decided we would start switching things up (I know, we are crazy) and have the kids come over to our house for Sunday night Bible study. We spent all weekend prepping the house for the youth, and today I broke out the kitchen gear to prep snacks for them. I felt so…normal. Oddly normal. I used to love to cook, and being able to do so today felt good.

Both of the boys were giddy with excitement as the teens slowly started to fill the house. We ended up with 25 at the house, Malachi clinging on to every word and laugh. We are planning to make this the new Sunday night routine so please pray with us that God protects our home from any potential sickness!

img_6050img_6047

When we built this house we specifically designed the basement for having Bible studies and youth activities in it. We prayed over each room and buried a verse under the foundation that had been chosen for each specific space, and the one we chose for that main area was done with the teens in mind. Since Levi entered the picture and required being on the main floor due to the oxygen concentrator, we decided it was unrealistic to host anything. But having the chance to have the kids over routinely is such a fun new adventure. And it forces me to clean each week haha.

Levi has recently started loving an audience. On Saturday night we met with some church friends and he was showing off his new walking attempts. Here is a silly video:

And another silly video of Levi singing. He has started humming while he plays by himself, and Jake does the exact same thing. It is so sweet to hear his little voice.

Malachi made it to school three days this week but had to be picked up early one of them due to some big seizures while he was there. I usually leave Levi strapped into his car seat while I walk Malachi up to the drop off doors, but on Tuesday he just wasn’t having it. I loaded up Malachi into his chair and carried Levi for the drop off. He was mesmerized, but started to cry when he watched them wheel Malachi away. I tried to explain the process to him, but he wasn’t satisfied until we picked Malachi back up that afternoon.

img_5963

Levi knows no danger. And this week he mastered opening doors…including the front one. And wouldn’t you know it but ten minutes after he successfully opened the front door for the first time the neighbor texted and said she had just walked up on a momma bear and two cubs out in front of our house. Ahhhh.

We had another young bear stop by a few nights ago and check out the front door. He was much smaller than the others we have been getting!

img_5957

Danger boy and all these bears are making us a nervous wreck so we have been in baby proofing mode. Well, I guess it is the next level up from there as we are having to prep the house for a Macgyver.

I turned around yesterday and he had crawled up to the table and grabbed two forks banging them on the table like a savage.

img_5992

Malachi rocked his therapies this week! His work ethic is so special- he wants to give his 100% to everything that he does.

img_5879

Wednesday’s horseback therapy had to be cut short as the heat just withered all of his energy. We got the horrible news this weekend that the horse he rides passed away very suddenly. I haven’t told him yet, but will be trying to find a way to explain it all to him. He has been riding that horse for many years.

Both of the boys absolutely love feeding therapy each week.

img_5872img_5878

Levi is starting to get more picky with his food and is still choking often on solids. But we will keep practicing!

This week I have been bit big time by the worry bug.

My mind keeps wandering to thoughts that I dare not go toward often…thoughts of Malachi’s life and how it might end. All of these fears prompted by the dozens of children like Malachi in my support groups who have been called into heaven in the last few weeks. This is the time of year that sickness begins to wreak havoc on poor immune systems like Malachi’s.

Will he be taken quietly in his sleep?

Will he pass away during a unstoppable seizure?

Will he go in for a surgery and never make it off the operating room table alive?

Will he outlive Jake and I, which brings a whole new set of fears?

Will he smother himself, something that I could have prevented had I been more watchful?

My mind has wandered towards these horrible thoughts all week. And as much as I try to push them aside, they continue to play on repeat.

I am a self-admitted control freak. And there are so many stinking things in my life that I simply just can’t control. So I have this tendency to try to play out every scenario in my mind with the hopes that I will prepare my heart for what might happen.

But boy, oh boy, worry can suck the energy right out of you. These thoughts exhaust me, and I can feel the weight of them growing heavier on my tired shoulders.

In Psalm 23 there is a verse that says “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me.

I never understood what the shadow of death was until I encountered these thoughts with Malachi. And there isn’t really a better way to describe them other than a “shadow of death” that lingers in my thoughts.

As a child of God, I know better than to worry…but I still worry.

Even as the worry sucks my breath away I feel conviction for letting it fester that far. But yet I still let it continue to overtake my thoughts and prayers.

I read a verse this week and it was like God snapped His fingers bringing my attention to something big in it.

1 Peter 5:6-7

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Read that intro again: Humble yourself.

I have always seen worry as a weakness, but as I read this verse I was reminded that worry is also a form of pride.

When we are unwilling and unable to release our worries to God we are assuming that they are something that we can handle on our own.

God wants to turn our stubbornness into a heart of submission…a heart that reaches for the rod and the staff for comfort, trusting that the Shepherd knows the path we are about to embark upon.

Pride has always been my #1 sin, although many other sins spawn from that pride. And now I see that my worry is no exception!

God doesn’t love me any less for this weakness. But He longs to take the burden from me that I insist on continually placing on my own shoulders.

So this week I will try to interrupt my worry tinged thoughts and replace them with prayers that God will uproot my pride. I pray that I learn to speak AND BELIEVE that God’s future plans for Malachi are perfectly in line with the will of God.

So here I am, again, casting my cares on Him. May God help me control my hand this week and not reel them in again!

Much love,

Leah

 

 

 

 

He Emptied Himself

Let’s start this week’s entry with a silly story from this morning. Hopefully it will make you laugh as much as I did. And the title of this blog is meant for the devotional at the end but is oddly fitting for this story too.

img_5637

And a short time-out to acknowledge how big Malachi is getting. Seriously, where did my tiny baby go? Facebook reminded me this week of how tiny Malachi was, hitting the 9 pound mark at 6 months old! My oh my how far we have come from his 1 pound 12 ounce birthday body!

img_5613

This morning I woke up and looked at my ragged face in the mirror- always a dangerous game and one I don’t often get time to play! We have had a jam packed weekend and Malachi woke up for the day at 3:30. As I looked at the bags under my eyes I decided to take an extra few minutes on hair and makeup before leaving for church. I even took the time to pick out a pair of earrings, something I never have enough brain power to remember. I just wanted to feel pretty this morning for some odd reason.

The morning was going wonderfully and I left the sanctuary with the boys when the preaching began; we always listen from the lobby area so Levi can be his wild self and I can still hear the sermon. I scooped Malachi up and put him on my lap and I suddenly felt the warm sensation of him peeing all over me, and the puddle of urine on my dress confirmed it. I was debating what to do, and I thought the first step should be to fix his diaper so he doesn’t do it again. Without being too graphic, I quickly checked to make sure everything was tucked into the diaper as it should be.

I leaned down to take a quick peek and as I did so Malachi contracted his little abs and shot a two foot stream of pee right into my eyes with a ridiculous amount of force…like a water hose to the face. Within seconds I was drenched, literally dripping urine from my hair. Pee was everywhere…running down my face, running down my arms, and all over the front of my dress….not to mention the puddle that was already on my lap.

I gasped and froze, not quite sure what to do in that moment. Then I realized what had happened and couldn’t stop laughing. I laughed so hard I started crying, which was probably good for flushing the urine out of my eyes. I texted Jake to come out of the service to help and when he saw that I was dripping like a wet dog he too started hysterically laughing. I stepped into the restroom to see what I could do about damage control and I saw the hair I had spent the extra time fixing and the eyeliner I had put on for the first time since Easter running down my face. The whole idea that I had tried and failed so miserably at looking presentable made me start laughing all over again.

Needless to say, I packed the boys up and headed home.

Moments like these tend to come more often these days. I am trying to learn to roll with the punches, but sometimes the moments are just so ridiculous that I can’t help but throw my hands up in surrender.

img_5735

We met with the Chattanooga pulmonologist this week about Levi’s Cincinnati trip. I had assumed that he had already read the notes that Cincinnati had send over but when he casually walked in and asked how things were going I realized that he hadn’t heard the news yet that his cords were still paralyzed. I delivered the bad news and he seemed genuinely shocked; his reaction was very similar to mine when the surgeon told me. He was confused, doubtful, and flabbergasted.

img_5757

Levi had a grand ol’ time looking at the boy in the mirror.

img_5773

img_5763

Doctor visits are getting more and more difficult and exhausting these days. Levi wants to be mobile and I desperately fight to keep him from touching the germy ground in the medical setting. By the end we are all cranky and exhausted. I took this silly video of Levi as we were passing the time playing with bubbles.

Cincinnati would like for us to do another sleep study off oxygen and make sure that Levi is still breathing safely at night. Sleep studies are in the top three of things I absolutely hate to do to the kids. But if they think it needs to be done we will begrudgingly comply. We will be scheduling that soon, but it usually takes about two months to actually get him in there.

If the results say that he is breathing safely, insurance will be taking all equipment from our home. We have several tanks, an oxygen concentrator, and a pulse oximeter machine to monitor his stats and heart rate at night. He is only needing oxygen when he is sick right now but knowing it is there when we need it brings me peace. I am very anxious about losing the pulse oximeter as it gives me the peace I need to take my eyes off him at night. He is still dipping his oxygen a few times each week causing the alarm to go off so I jump up and make sure he is still breathing and doesn’t have his cords wrapped around his neck.

I looked into purchasing a hospital grade one like his and they are over $1,000. The disposable sensor strips alone are $25 each and he burns through those every 5 days. We may look into trying to get a grant to help cover that cost so we have the ability to monitor his oxygen levels, especially when he is getting sick.

Levi’s new favorite hobby is unrolling the toilet paper from the roll.

img_5548img_5545img_5549

The boys have also been so sweet with each other. I tried to snap a few pictures to document the sweetness for you. Malachi has been generously kissing Levi and Levi in turn wants to sit close to Malachi and hold his hand. I love their tender hearts so much.

img_5662

img_5711

Malachi went to school three days this week! He is technically a first grader, but he is in a CDC classroom and spends a bit of time in inclusion classes. He was so excited to see his friends and teachers! He is so opinionated these days so I gave him several outfit options to choose from. Do you want to wear Superman? NO    Soccer ball shirt? NO     Big brother shirt? NO    Ninja Turtles? YES YES YES!!!

Ninja turtles it is!

img_5578

We have been trying something called Real Food Blends with Malachi, a diet that consists of pureed adult foods like salmon, squash, oats, etc made specifically for adults with g-tubes. It has been settling very well with his belly and sustaining him longer than his formula. Last year his school scheduled revolved around his feeding schedule so I wouldn’t take him in until 10:45 and pick him up at 2:00. This week we have been successfully doing 9:30-2:30! That is a really long day for Malachi but he is tolerating it very well, and he hasn’t had a single seizure at school!! That is wild!!

We found a new wheelchair tray and it has been an absolute game changer for his posture in the chair. Such a simple addition but it makes a world of difference for him. He is able to sit up at 90 degrees now and uses the tray for coloring and playing with his toys. This may be my newest favorite picture of Malachi.

img_5586

img_5593img_5600

We knocked out grocery shopping, 6 therapy sessions, and a handful of doctor visits.

img_5811

We also attempted some new foods with Levi. Some went well, others not so much.

img_5813img_5604

Saturday we spent an entire day (7:00am-7:00pm) with the soccer team at a play day an hour away. I usually don’t get to go to these and stay all day since Malachi is so heat sensitive and can’t be outside for long periods of time. Our amazing friends volunteered to drive their air conditioned travel trailer out to the fields for us so we could have a comfortable place to sit with the boys between games. The gesture blew me away. The more I thought about their kindness the more it impacted me. Our days can be very long and very challenging and when someone chooses to step into our world to find specific ways to help it means so much. It is like a balm to my weary soul.

img_5553

This morning as I sat with Malachi I started to process what our friends did for us, and I got emotional. Life has never been easy for me and I have not often been a priority to others. I have had to get used to a life of sacrifice even at a young age, and sometimes that prompts some pretty big pity parties. But when we are a child of God, our focus shouldn’t be on our needs being met…we should trust that God will arrange those details for us and instead shift our focus to meeting the needs of others.

As I read through Philippians 2 this evening a few things caught my eye…

The chapter charges us to be like Christ, especially in how we interact with each other.

One of the biggest challenges for me is found in verses 2-4: “Do nothing from selfishness or empty conceit but with humility of mind, regard one another as more important than yourselves; do not merely look out for your own interests, but also for the interests of others.”

How often do we do these with hidden agendas and ulterior motives? We may be doing what seems like a selfless act but in the back of our minds there is a secret reason why we are doing it….do we expect something in return? Do we hope someone specific will notice or reward our kind gesture? How often do we mask our own ugly selfishness? The Holy Spirit is quick to play this verse on repeat in my mind and heart when I am guilty of this very thing.

But if you keep reading there is something noteworthy in verse 7; I want you to read it in context:

5 “Have this attitude in yourselves which was also in Christ Jesus, 6  who although He existed in the form of God, did not regard equality with God a thing to be grasped, 7  but emptied Himself, taking on the form of a bond-servant…”

As I read these words they pricked my heart. How often do I truly empty myself for others? How often do I gladly choose to take on the heart of a servant and give the fragments of the energy I have left to others?

When we are truly taking on a heart like Christ’s we should be looking to empty ourselves, and in turn rely on God to refill us. Why are we so cautious with our kindness, almost as if we believe if we give too much kindness away we won’t have any left for ourselves?

How often do we limit our selflessness due to selfishness? How often do we try to make our selflessness conditional based on our needs at the time?

I know I am guilty of both of these things.

So this week I will be praying for opportunities for me to pour out my reserve. Those tiny fragments I try to cling to are the result of my selfish nature; if we truly want to be like Christ we have to allow ourselves to be emptied.

Alright, my eyes are officially crossing as we approach midnight and Malachi is still wide awake! I am going to work on getting him ready for bed and starting tomorrow with a new, fresh, urine free face and eyes that look to fulfill the needs of others.

 

God bless,

Leah