This week is a big week for Levi as he will undergo his sleep study in Chattanooga. To recap, the ENT surgeons and the pulmonologist are concerned that Levi may be retaining too much carbon dioxide and may be having too many apnea spells while he sleeps. If this sleep study proves these things to be true the only option left on the table to is to trach him.

 

I am trying to think positively about the test, praying that he will knock it out of the park and wow the surgeons with the results. He is hooked to a pulse oximeter every night which reports his heart rate and his oxygen saturation but the numbers are the average over the course of 10 seconds so we can’t find a whole lot of comfort in that. The sleep study will give us real time information.

Clinically Levi is doing wonderfully. He is breathing quieter than ever before and his retractions are now very mild. He is mastering the art of rolling which is challenging for all of us as he wraps the tubes around himself and sometimes his neck. We have to make sure to be close and ready to unwrap him whenever needed. He is on the verge of crawling which will make things even more interesting. And he is growing!

His sense of humor is blossoming by the day and he does things just to be silly. He loves to make us laugh. And yes, he still looks just like his daddy; here is the picture to prove it:

Malachi worked hard at therapies this week. We tried implementing his communication switch on the horse but he just couldn’t seem to make the connection when we tried it. We may try again tomorrow just to see if it was a fluke. He has different faces for different things, and I was able to capture his concentration face while he was working hard at swim therapy:

He is getting more opinionated which is truthfully really fun to see. We try to give him options with everything he does, as we would want the same treatment, and he has been very clear with his responses. Last night I asked him who he would like to put him to bed, momma or daddy and he very quickly and clearly shouted “DAD”. He loves his daddy.

Speaking of Jake, this is the week he goes back to work. Boo.

We also got word this week that Malachi’s teacher from last year took a job in another county. This was really hard to hear as we felt very confident leaving Malachi with her each day. The nurse in the classroom will be returning so that is a plus but we will need to train the new teacher on all of his quirks before we will feel comfortable leaving him at school for a few hours a day.

The new teacher seems very kind and sincerely caring and even took the time to come over this week and spend a few hours with Malachi to get to know him. That has made both Jake and I feel much better.

And his former teacher brought her son over for a play date with Malachi. He really enjoyed getting to share his toys and swing with his buddy. At one point the boy got a little too rough (in a totally age appropriate and innocent way) with Malachi and my heart smiled when Malachi signed “NO” with his mouth…way to stick up for yourself! Here is a video of them in his swing:

 

I called the director of special education in our county to talk about student teacher ratios and it sounds like they aren’t sure how many kids they will get in his CDC room this year. If I had my way, Malachi would have a single paraprofessional assigned to him for safety/epilepsy reasons. But the director continues to tell me that she doesn’t feel that it is necessary and that the classroom teachers can handle all the children including Malachi without assigning him a 1 on 1. I am not convinced. We will be keeping Malachi home for the first few weeks until we can get a better idea of what to expect.

It has been a long time since I have actually considered calling 9-1-1 but last night I was close to calling. We went to a local even for families with exceptional children- something I had been looking forward to for several weeks. I am not sure what exactly the issue was- the heat, the noise, the excitement…

But Malachi went into a big seizure. He has 6-8 seizures a day right now but they are all short and predictable. Yes, this is a lot but Malachi has something called Intractable Epilepsy and we just can’t seem to get them under control. We could continue to try new medications or increase his current two but when we do he is nearly sedated and has no personality. We have to find that delicate balance of keeping him safe and allowing him to “live life” with some quality.

Last night’s first big seizure lasted about 4 minutes and his whole body was convulsing. We have rescue medication on hand if they last longer than 5 minutes but when we give him that we have to call 9-1-1 because it can relax him so much that he stops breathing. It isn’t an ideal fix so we avoid it at all costs. But as we passed the 4 minute mark I started to consider it. He finally came out of it and projectile vomited as he always does with the large ones.

Within about 20 minutes he went into another large one and that was our signal that it was time to go. On the walk to the car he had another. Then another on the ride home. And another before bed- all large and scary.

This was a photo from the group’s album that was posted today. You can just tell how wiped out Malachi was.

Poor little Malachi was exhausted last night and went to bed earlier than his norm. He was up and down all night but we thought we were through the large seizures. Today he had a decent day, but tonight he just had 3 more large seizures. Tonight they scared him and when he came out of each one he cried; it just breaks my heart to see him struggle. We aren’t sure if they are still related to yesterday’s incident or something larger like a shunt malfunction. We will be watching him closely.

So again, back to my school conversation, if I as his mother am nervous during these seizures what will happen at school when a teacher who has 15 other kids in the classroom do? I want to make sure he is safe. Period. Or what if there is a fire in the school? If the ratio is 5 student:1 teacher, which kids will she get out of the building first? Is it really safe to expect a CDC teacher to get 5 of the students with varying disabilities out efficiently?

This week I took a “Leah Day”….well a “Leah 3 Hours”. I went alone to town to run errands. I really lived it up with a trip to get the oil changed, the bank, and to get milk for the kids. It felt so strange but wonderful to park in a non-handicap spot and walk from far out into the store. Aside from the handicap ramp on the van, I was just like everyone else for those three hours. Even the action of getting out of the car and immediately walking away from it was such a strange sensation for me- we are used to a 5 minute unload process for wheelchairs, strollers, and kids wherever we go. And the stares. I was anonymous again and it refreshed me a bit.

And to add to the chaos- on Friday I took some of our youth group to the trampoline park and mall food court for one final summer outing. It is always hard to transition between taking care of the boys to watching 20 teenagers in a public place. Lots of counting heads and empty threats haha. When I went to pay for my lunch my card was rejected. I was totally embarrassed but knew that there were funds in the account so I called the bank. My debit card information had been stolen and the person was trying to use my card on multiple websites and it flagged the fraud department (praise God). Always an adventure in Carroll land!

I did a Facebook post this week about this picture that I figured I would share it with you for the devotional this week:

“Although the Lord gives you the bread of adversity and the water of affliction, your Teacher will be hidden no more; with your own eyes you will see your Teacher. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying ‘This is the way; walk in it.’ “ Isaiah 30:20-21

Earlier today I caught myself in a moment of mourning. As I prepared to give Levi a bath I flashed back to conversations with Jake when I was pregnant. We talked about how Levi would be the “easy” one. After Malachi’s rough start we were so thankful that God blessed us with a second son.

 

As I always tend to do, I find myself munching on some big concepts lately. I need to process my thoughts a whole lot more before I dig into them with you all…but I am close! But here is a teaser question for you to think on…

Are expectations good, bad, both, or neither? 

Please be in prayer over the boys this week, each for their own unique issues. Levi and I will be admitted Tuesday evening at 6pm for his sleep study and prayers during that afternoon and evening would be appreciated if you think of us. We are told to expect to be finished at 6am.

And please continue to pray for wisdom for Jake and I. We need more than simple generic parental guidance from God…we need Him to guide us into the right BIG decisions that affect the lifelong outcomes for our boys. The weight of these decisions is such a big load to carry….good thing I serve a GREAT BIG GOD who can help us carry that load and strengthen our shoulders in a supernatural way.

Much love

Leah

 

 

Ten days. There are just ten more days until Jake goes back to school and we are back to increased caffeine intake requirements and a very tired momma. Routine changes are difficult for our family, but like we always do we will figure it out.

Malachi has been magnetized to Levi these days, rolling until he gets to him. It has been fun to watch him engage his muscles to go somewhere! I guess he just needed the right motivation.

For the last few days we have had Jake’s family in town for a visit and we packed all kinds of adventure in- playgrounds, swimming, the aquarium, soccer games, golfing.

But the best part of all was getting to spend time around my nieces and nephews. Jake and I are always completely fascinated by “typical” children. We could just sit and watch them for hours as they process the world and interact with it. And Malachi was in heaven listening to all their sweet little voices. There are now 7 cousins ages 6 and under on Jake’s side and when they are all together it is like music to his ears.

As you can see from the picture above, the aquarium was a lot for little Levi to take in.

The cousins were obsessed with Levi, and he was just as obsessed with them.

Prior to our guests coming into town we tackled 7 appointments this week. I also officially scheduled Malachi’s feet and hip surgery for the week of Thanksgiving, hoping to get it done while Jake is off work and also hoping the follow up appointment will hit over his Christmas break. If Levi’s upcoming study goes well we will won’t have to go back to Cincinnati until December so it will be nice to have one surgery done before the next kid is due for his.

Malachi had an exceptionally great week at swim therapy!

I took a video for you:

He hasn’t been doing so well on the horse, shutting down quickly and not wanting to do his therapy exercises. Just by watching him I can tell he is getting a little bored with it so tomorrow we are going to take his communication switch and see if that helps any.

Levi is continuing to work on tastes and small bites of food, and that has really motivated Malachi to eat more bites. We have been making sure to explain to him that he gets “big boy bites” and Levi gets “baby bites” and he is totally buying into that concept. He wants WHATEVER I am eating and tried so many foods this week with success. He even ate half of a popsicle which he would never attempt before.

Today at lunch I ordered him some applesauce and he continued to tell me he wanted more. After he ate half the bowl he signed to me that he was done so I offered some to baby Levi. When Malachi heard that he immediately signed NO. I asked him if he would share his bites with Levi and again he adamantly told me NO again. When I asked Malachi if he wanted more he said NO. He just genuinely did not want to share with brother!

I know this may sound odd but these little glimpses of brother jealousy make me so happy. And if you are wondering- Levi did in fact get the applesauce. While we want to encourage Malachi to communicate we also want him to understand that he has to share with his brother haha.

Even more interesting is that Malachi was so happy and excited to share his toys with his cousins all weekend! Everytime we asked him if they could play with _______ he would sign YES. I guess it is just a brother thing.

As I mentioned before we took the crew to the aquarium. In special needs parent world this is a bigger deal than just a simple outing with the kids. Before we go to a place like this I have to mentally prepare for the day, knowing that I am choosing to take them to a place where we will be gawked at. While it shouldn’t be that way, it inevitably is as many children have never seen a boy in a wheelchair.

Malachi can see much better in the low light of the aquarium. We can always tell when he sees something for the first time because it brings him so much joy!

And with each gawking child comes a parent who is scrambling, totally unsure of what to say to get their kid to stop staring. We truly want Malachi to live as normal of a life as possible, so we just acknowledge how it is going to be and prepare to be “seen”. It is always a reminder to me though about how we (speaking of you and I collectively) choose how we react to things. I can choose to be bitter, angry, or hateful to these children as they point and gawk. Or I can choose to see innocence and remember that these children live in a world untouched by disabilities…and isn’t that a good thing? I would have been exactly like these children when I was younger.

But we choose how to react to life. All facets of it…the good, the bad, the ugly. Every reactions is a choice.

This morning at church we had a bluegrass band come to play for us. Both Malachi and Levi were inspired by the music and were WILD. Malachi was dancing around in his own unique way and Levi was soaking it all in with wild and excited eyes. At the end of the service the pastor prayed and as he was praying Malachi started yelling things out. I quickly shushed him and said quietly in his ear “We are praying to Jesus” and then I immediately felt regret for shushing him.

Malachi is so aware, and has always been very intruiged by prayer. I try to narrate as much of life as I can to him so he can tell what is happening around him, and I always make sure that he knows when we pray that we are talking to God. His whole body language changes when someone prays and he sits upright, eagerly clinging to the words.

And as I heard him yell this morning during prayer I can’t help but wonder if Malachi was trying to talk to God. And how that sweet little voice must have brought so much joy to God’s ears.

Here is a video of Malachi and daddy playing on the playground this week:

I have been trying to decide on a good devotional thought for you all tonight, but the truth is I myself have been struggling this week. I can’t seem to stop thinking about how my identity has transitioned over the last few years and I am subconsciously mourning over it.

I started playing soccer in middle school and it became such a huge part of my life. I love the sport so much! When I started teaching in 2008 I began coaching and for the last 10 years it has remained a big part of my identity. This week we organized our annual “community game”- we ask several adults in the community to play on a team against our soccer girls. It is always a lot of fun to watch and it gives the girls a chance to play together before the season begins.

Last year I was pregnant and couldn’t play and I was SO looking forward to this year’s game. Game day rolled around and I geared up, ready to play the sport I love so much. But as the game went on I found that I was distracted by my children (who were being supervised and doing great with family on the sidelines). And things just felt so…different…

It really bothered me. And as I processed the “why” I realized that through the last five years so many things that I thought were my identity were disappearing.

Friend of _________. And now we haven’t talked in months. I did a lesson with the youth girls on friendship two weeks ago and as I talked to them about the topic I realized that I don’t have a whole lot of close friends. I have lots of acquaintances and I can tell you the names of the people I pass on the road in our tiny town but I don’t really have any close friendships right now…life just doesn’t allow time for those.

Avid book reader. And haven’t cracked a cover open in years. I have two books on my nightstand that I am so incredibly eager to read, but can’t justify spending the one hour of free time I might get each day throughout the summer to read a book. Most of those chunks of free time are spent napping or showering.

Special education teacher. But haven’t been in a classroom setting since the week Malachi was born.

Athlete. And haven’t worked out since pre-pregnancy with Levi. I had finally worked my schedule to allow some trips to the gym with Malachi and two weeks after I bought the gym membership I became pregnant with Levi.

Dog lover. And our sweet Boomer is still living with Jake’s parents in Ohio as we aren’t comfortable with an animal being around all of Levi’s cords. Malachi misses him as much as I do!

There are so many things that have always been my “identity”…and they are just simply gone. And for some reason this week I have been really struggling with that.

And as I always tend to do- the more I sat on the thoughts the more my rational side started to take over. I was reminded that even though my roles have been changing and my identity has morphed dramatically over the years there is peace knowing that one thing has never changed:

I am and always will be the daughter of a King.

And when I remember this and then look at these things I am mourning over they start to seem almost silly. My identity needs to be found in Christ and in Christ alone. And through that life an even more important identity will be established as I become an image bearer of Christ. And THAT should be the vein that all of the other adjectives I strive for should flow through.

When we focus on rooting our identity in Christ alone we allow ourselves to be used by God and not try to put Him in a box. God can use us to do so many great things- things we never dreamed we would find ourselves doing- if we surrender our ideals to Him. If we allow Him to guide us step by step through life then it doesn’t matter what tasks you are or aren’t doing. All that matters is that you are bringing the light of God to whatever situation He has brought you to.

John 15:16 “You did not choose me, but I chose you and appointed you that you should go and bear fruit and that your fruit should abide, so that whatever you ask the Father in my name, He may give it to you.”

So I guess the lesson for me this week is that I need to find contentment in my job role of being “Fruit Bearer”. I have been chosen and appointed by God for this life that He has given me and that should be all I need to hear!

Identity crisis over for now. So my tiny violin can go back into it’s case for a bit haha.

Please be in prayer this week for Levi’s vocal cords to wake up and for Malachi’s brain to reconnect. Pray that God chooses this week to be the one where we see miracles for both boys. I continue to speak “Ephphatha” over Levi’s airways and speak restoration and wholeness over his brain- will you join me in that prayer?

And may God speak to you this week,

Leah

 

It was a beautifully slow week in our household so we spent most of it chipping away at our never ending to do list. As far as appointments go we only had therapies for the kids- horse therapy, aquatics therapy, and physical therapy. All local and manageable.

There are some hidden challenges to being a special needs parent that most people may not think about, and one of them is the mental anguish of the calendar. It is filled with therapies, specialist appointments, and surgeries. These appointments loom over me- I always have to keep them in the back of my mind as they dictate everything else we want to plan. It feels so good to mark them off the list…but that is where the mental anguish comes in. Each time we finish an appointment we immediately have to schedule the next one so they are never really “crossed off the list”. They never really end. Right now we are scheduled out through December.

So since we have a slow blog day let me take some time to tell you about Malachi. He is changing. I don’t know what wonderful God is doing in his little brain but we are connecting in a whole new way. When people see Malachi there are quick assumptions made like he does not know what is going on (after all, he is legally blind), he can’t understand what you are saying, he is just a shell of a child. But Malachi is so much more than a shell- he is a 5 year old boy that is trapped by a body that doesn’t function like it should.

Malachi has opinions. Lots and lots of them. He has likes and dislikes and will let you know them very clearly if you know what to watch for. He loves to communicate and gets SO excited when you understand his communication signs and listen to him. He craves being talked to like a typical boy and understands so much more than you would imagine. He wants to be in control of things, which is tough with a body like his. So when he does get that rare chance he knows he is BIG stuff.

Malachi wants to know where we are going next and who he will get to see. He wants details (just like his momma). He has an impeccable memory and routines make his exceptionally happy. His imagination lately has been so wild- particularly enjoying pretending to be dinosaurs, puppy dogs, and angry like Llama Llama Red Pajama.

Malachi is stubborn, just like his momma. He will do things simply because I told him not to. And he will smile sheepishly as he does it. But he is also incredibly sensitive and has the saddest crying face you will ever see. He gets in trouble a lot these days and has to be corrected often, which truly hurts his feelings. He also gets bored, and will do bad things to get your attention- like throwing himself out of his chair.

Malachi loves Levi. I know I say that a lot but the love there is so special and deep. This week I have been trying hard to give him the same big brother responsibilities a typical kid would get. I let Malachi help get Levi ready for the day, piling wipes, a diaper, and an outfit on his lap. As I change Levi I ask Malachi to hand me the ______ and he will slide them off of his lap and to me proudly. He loves to be a big helper and will puff his chest out proudly when I tell him what a good job he did helping. Here is a video:

God is healing Malachi. It isn’t in a grandiose and obvious way, but I see it. His mind is so sharp. He has been so sweet to me lately with lots of big hugs where he squeezes me as tight as he can and lots of impromptu kisses.

His favorite toys right now are his cars and blocks. He strategically will knock them off his tray to make them go BOOM on the floor. He thinks it is hilariously destructive and sometimes it wakes up little brother, which is an added bonus. And he is still the most joyful child I know, laughing at the simplest things and noises.

Oh my goodness how I love him! But I have to be honest…he breaks my heart each and every day. I watch him as he listens to his favorite cartoon shows as the characters tell the audience to do something, like pat your hands on your lap. And I see his little brain trying to communicate to his hands to do it. And I see his little hands move, but they don’t do what he is willing them to do. He just can’t. And my heart breaks to see him work so hard and not be able to do it.

Of course, that’s where I come in- running over to him and helping him pat his hands on his lap. Or do the “Hot Dog” dance from Mickey Mouse Clubhouse for the hundredth time. But seeing the giant smile on his face as we do the things his five year old brain really wants to do makes my heart swell in a good way.

Parenting a child with severe disabilities is so much harder than I ever imagined. I fight back tears on an hourly basis- pretending to be strong for him and reassuring him that he is perfect just the way he is. I can’t take time to mourn for his “different”. I have to be the strong one that assures him that he is able, he is valuable, and he is so special to God.

And then there is Levi. Happy, go-lucky, feet loving Levi. He brings such joy into our lives, filling so many small gaps in parenthood that we have missed with Malachi. We are like first time parents, googling things way more than I care to admit and always asking “is this normal?” I could sit and watch him play for hours. His facial expressions are hilarious and he already has a strong sense of humor.

He has enjoyed trying some new baby foods this week as long as he is in control of the spoon which ends up being a messy game.

I know we say this all the time and it sounds like we are just being overly religious, but we are so blessed by these unique boys.

And yes, Levi fell asleep in his swing like this- holding his foot up in mid air. So strange.

Oh goodness so many different directions to take the devotional thought tonight…

I have found a new flaw in myself this week. I have always known it was there but didn’t want to, or should I say didn’t know how to address it.

My heart has taken such a beating over the last several years. I don’t know that it is relatable to many of you, but when you watch someone you literally would die for go through suffering and pain it changes you. I can’t take their place, I can only step into the storm with them and hold them tightly, hoping they won’t feel the storm’s effects quite as much. But I watch helplessly as I see the storm sometimes win.

I feel so helpless like things are out of my control, which time and time again life has proven they are. And each day I wonder to myself if today is the day that things are going to dramatically change for the worst. Each and every day I have to wonder if this is the day I will find that my son has died in his sleep. Is this the day that Malachi will have “the” seizure- the one that takes away the sweet little 5 year old that gives me the tightest hugs his little brain can muster.

I have been living life waiting for the next disaster to hit. And oh my, is that a weary way to walk.

And to be honest, I don’t know that there is a solution to my problem. Sadly, all my fears are rational ones. One day that fear will become our reality…and like I have mentioned before I am torn between wanting my son to outlive Jake and I but also not wanting him to experience any excess suffering and pain, which many children like him have a tendency to do as they grow older.

So I have started to think this week about how I can combat this mindset, because deep down I know it isn’t healthy and it definitely isn’t the way God intends me to walk through my day. And this week he reminded me of something huge:

Malachi is not mine. He belongs to God. And while life tells us we should be on this earth for ____ number of years in order to live a “fulfilled life”, that is a standard that we have created, not God.

Malachi’s story has somehow managed to touch millions of people. There are not many immobile, non-verbal five year olds who have impacted the kingdom of God in such a big way….without speaking a single understandable word. Through his story we have been given the unique and wonderful opportunity to tell you all about our God. God has packed a lifetime of impact into these last five years for him- how beautifully powerful is that?!?! And how blessed are we that we have had a front row seat to watch God work?

And when I remember these truths my mommy heart starts to mend itself.

I really don’t know that I will ever get past this, but when those moments of fear hit I need to stop them in their tracks and refocus on the TRUTH and the beauty of Malachi’s life.

I know all that isn’t necessarily applicable to you, but this verse is:

Ephesians 2:10  “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”

Have you ever stopped to think about the day God created you? How He spoke you into being. How He took the time to handcraft you, as unique and special as you are?

And He also prepared things for you to do in this life. What are those things? Have you spotted them yet?

God didn’t create us with the goal being to live a long life, or have a bunch of kids, or become wealthy. He created us to do good works…things He has specifically chosen YOU for.

My prayer is that He continually leads each of us to those good works and gives us the strength and courage to attempt them, knowing they have been specifically designed for us.

Please pray specifically this week for Levi’s sleep study on the 31st. There is so much weighing on the results- if he fails this study we will have to trach him. Please join me in praying for a miracle that his vocal cords wake up before then and begin functioning as they should. And pray for sweet Malachi, that God will continue to reconnect the broken pieces of his brain. And pray that God gives Jake and I supernatural wisdom to be able to navigate the decisions and needs for these two special blessings.

Much love,

Leah

 

 

 

 

This has been a week of ups and downs. Strap on your seat belts and be ready for a long update.

But before I start those updates, let me tell you…last week’s update gave me a good laugh as I could tell how tired my brain was when I read it back. To be totally transparent, I fell asleep three times while trying to write the devotional part. Apparently my fingers kept typing during those moments leaving some pretty random sentences. At one point I woke up to find that I typed “Christians typing sentences”…

But I am filled with caffeine right now and haven’t seen a rat turd today so it should be better one.

Let’s start off with my epic Friday meltdown. A few weeks ago we took Malachi to his regularly scheduled neurosurgeon appointment. Some background info here: Malachi has a device in in his head called a VP shunt. When his brain bled at 3 days old the blood dried and clogged the small holes for his spinal fluid to escape the inside of his brain (the ventricles). The VP shunt is a small machine under his scalp in the back of his head- most people don’t know it is there, although oddly enough his hair is starting to turn gray right where the shunt is. The shunt has a catheter that allows the spinal fluid to get out of his ventricles and re-routes it into his stomach cavity for the body to absorb.

Statistically, most children that have these shunts will have at least one malfunction in the first 5 years. We are on year five and have not had a malfunction, praise the Lord! A malfunction would likely require emergency surgery to repair or replace the shunt as he cannot live without it.

We routinely check the shunt using CT scans to make sure it is working like it should, but CT exposes him to a lot of radiation. At our most recent appointment the neurosurgeon suggested we do a “rapid MRI” to get some baseline images of how the shunt is working. An MRI would be much less radiation for him.

But here is the catch: we have never allowed anyone to do an MRI on Malachi. Yes, doctors have consistently tried to get us to do one but we have always declined as they wanted to do it more out of curiosity rather than medical necessity. Malachi’s brain damage is global (meaning all over the place) and he does not have much brain matter left. Doctors have always been fascinated by Malachi’s ability to function as well as he does and wanted to get better imaging of his brain. But MRIs require sedation, something we have a bad history with. So we always say no.

When the neurosurgeon brought up the rapid MRI I immediately started building up that concrete wall. I said “We really don’t want to sedate him unless absolutely necessary…” to which he replied that the rapid MRIs don’t require sedation. I said “So he can move?” and he said yes. I asked him how long the scan would take and he said “only about 30 seconds” and that it was a relatively new technology for the hospital.

Hey, that doesn’t sound so bad! We agreed to the rapid MRI and he said they would call and schedule it.

Fast forward to Friday and MRI day was here. I left Levi home with Jake and Malachi and I embarked on our 1 hour drive to the nearest children’s hospital. I checked in at the front desk 15 minutes before our scheduled time and they told me if I was willing to walk across the hospital to the other MRI rooms I could get scanned right away! If not, I would have to wait at least 30 minutes. That was an easy decision so I packed up and started our journey. We got to the new location and we were given some hospital scrubs to put on as you have to be extremely careful about what you can have near MRI machines.

We were changed and ready to go, but the techs were studying his paperwork and noticed the note about the metal coil next to Malachi’s heart. In 2015 he had a heart procedure to place a coil to close his PDA. Apparently the machines in this MRI room weren’t able to scan patients with heart coils. So they sent me back to our original office.

I was trying my best to keep a good attitude as I wheeled Malachi, both of us still in scrubs that were too big and barely covering areas that needed to be covered all the way across the hospital again. We checked back in and I was told that they had given our slot away since we had gone downstairs and it was going to be another 30 minutes before the machine would be ready for Malachi.

I could feel my attitude morphing slowly into Mama Bear mode as he and I sat uncomfortably in the waiting area, still dressed semi-undecently. I had waited to feed him as I didn’t want him throwing up when I laid him down. But now he was well past his time to eat and still we were waiting.

We finally made it back to the MRI machine and when we walked into the room I got hit with a wave of nausea. This was the same room Levi had been taken when he had his first MRI in November in the Chattanooga NICU. Levi had not done well on the journey to the machine and screamed and screamed on the short isolette ride until he turned colors. I kept asking his nurse and the airway nurse that transported him if he was okay and they kept saying “his numbers are still good” which we know from our botched airplane ride doesn’t always give you a good picture with Levi. Deep down I have wondered (and still daily wonder) if this trip to the MRI machine is what caused his moments of brain damage. I should have stopped them after he didn’t handle the transport well, but I didn’t speak up…something I carry so much regret over.

That night with Levi, they had told me they thought they could do it without sedating him, and as I watched him scream I knew that this would not be as smooth as they were anticipating. They strapped him to a papoose board and put him in the machine for 25 minutes only to report that he had moved too much and they would need to try again when he was sedated. I was a wreck that night as I knew I should have intervened…the simply had not done what was in Levi’s best interest and I didn’t advocate for him. I cried myself to sleep that night, ridden with guilt.

So back to Friday…here we were in that same stupid room. I was trying to keep my emotions intact as I picked up smiling Malachi and laid him on the table. She started to pad his head and put ear plugs in his ears and made the comment “we have to keep him from moving.” This struck me as odd, because the neurosurgeon had specifically told me that movement was okay for the rapid MRI. I said “It is only for 30 seconds right?” and she said no that he had to be perfectly still for at least 10 minutes. I explained that it would never be possible for that to happen and she said “We may need to call anesthesia to sedate him then.”

And then the emotional floodgates started to break.

Last time we allowed them to sedate Malachi he went into a 30 minute (yes, you read that right) whole body seizure that led to a hospital stay. I started to cry and said “You are not sedating him. We would have never agreed to this if we thought he was going to be sedated.” And told her to sit tight while I went and called the neurosurgeon.

The neurosurgeons office backed up everything I was told in the appointment, and said they would be right there to talk with the MRI techs. The techs were obstinately stating that this was the only way to do a rapid MRI. At this point it was all just too much for me and I was bawling and snatched Malachi up off the table and told them we were leaving. I try not to cry much these days, but when I do it is one ugly scene.

The neurosurgeon team had been waiting on us to get finished so they could reprogram his shunt (they can do that with a magnet- super cool huh). And when I came wheeling out of the MRI area they were there waiting for me. I continued to uncontrollably ugly cry, frustrated that I had come all this way under false pretenses and even more frustrated that people that didn’t know my child’s medical history well were so flippantly just “going to call in anesthesia to sedate”. They said they would try to schedule another one when we could be prepared for sedation and I told them no thank you. I know CT scans are more radiation but we would prefer to do one of those as they don’t require any sedation at all.

But all that crying absolutely drained me. I seriously could not get a grip. The neurosurgery team was so kind in spite of my breakdown and gave me some meal vouchers to make up for all the chaos. There was a zero percent chance I would be able to eat so I packed them away for another day.

Alright now let me give you a few heartwarming updates. We had our typical appointments this week, but Malachi got to see so many of his friends too. His buddy Thatcher just happened to have a horse therapy session right before Malachi!

 

Then the following day we were able to catch up with another friend named Jonathan. His mother stumbled upon our Chick-Fil-A story last year and connected with us…we live in the same county but on opposite sides of the mountain so our hangouts have to be intentional. We were able to meet up for lunch this week!

 

Malachi has been showing us a lot of emotion lately, which is amazing to see, but challenging to navigate. For example, at lunch with our buddy I let Levi sit on Jonathan’s lap. Malachi did not like sharing Levi and quickly said “NO” with his signs. When I offered for Malachi to hold Levi he very adamantly again told me NO. I put Levi on Malachi’s lap anyway and he proceeded to try to push him away. This happens often when Jake or I try to talk to Levi or give him attention…Malachi gets very angry.

He is also having a hard time sharing his toys with Levi, so we are trying to respect his feelings and designate some of his favorites as big boy only toys.

But he is very interested in the Big Brother side of their relationship. We talk a lot about how Levi is a baby but Malachi is a big boy so he has to learn to be nice to Levi. He likes to have those talks and puffs out his chest with pride that he is so big. He really does love his baby Levi.

 

But this week we experienced another first with the boys. Levi and Malachi were laying on the ground playing and as Levi often does, he rotated his body all the way around and kicked Malachi in the tummy VERY hard. I immediately moved Levi and watched Malachi to see how he would react. He was in shock at first, then his face morphed into pure sadness. He just couldn’t process why his baby brother had hurt him. It wasn’t a “pain” cry, but a “you hurt my feelings” cry that took 45 minutes to get through. I tried to explain to him that Levi is a baby and doesn’t know how to listen and obey the rules like Malachi does. I finally got him calmed down and when Jake came into the room I told him what had happened- hearing it again made Malachi cry even harder as he reminisced about what happened. Poor boy.

 

On my 4 hour drive home from South Carolina on Monday Malachi had his first full fledged temper tantrum. He has never had these before so it took me pulling over three times and checking him for pain/discomfort before I realized what was happening. He hollered from the back seat, screaming, yelling, and crying to let me know that he did not want to be in the car any longer. But yay for his ability to show emotion!

Levi has been doing so great this week. He is thoroughly enjoying exploring different foods and is eager to try new things. I took this video of him eating for you:

 

He is also exploring toys like a wild man. We let him play with one of Malachi’s cars and he was cracking me up so I took a video:

 

But the biggest fun update about Levi is that he has started giggling!! And it is such a beautiful noise; oddly enough Malachi giggled for the first time on July 1st (same as Levi!). Take a listen:

 

Levi really is such a good baby. He is starting to want to be held more and will reach out his arms to be picked up. He is insistent though on self-soothing when he gets upset and the only solution is to set him down by himself. This is something that has been making me sad lately, as it reminds me of all the times I wasn’t there in the NICU with him when he needed to be comforted. He has now trained himself to self soothe instead of relying on mommy to help, and it breaks my heart that a child so small ever had to experience suffering alone. A child should never have to equate humans to stress, and desire to be left alone.

In unrelated news, the bear(s) are back. Our neighbor saw one sitting in the road in front of our house last week, but he hasn’t come back up to the house yet! That I can handle.

Then later in the week Jake and I pulled onto our road and one was about 100 yards away. He hid in the tree line as we drove by and I texted the neighbor who immediately went in his car to go find him. He texted back that he had turned the corner from our house right after we had pulled in the driveway and it was running full speed up the road- almost as if it was chasing our car! He ran into the trees so we have been keeping an eye out for him.

This one was much smaller than our visitor a few weeks ago. Tall and lanky like a teenager.

Last week I alluded to some great conversations I was able to have with some of our youth, and one in particular keeps resonating with me. I am going to be very careful here to protect her so I will give general information.

One of the teens came and found me at camp late one night to talk about something she has been regularly struggling with. This particular thing has been crippling her and she just wanted to know how to get rid of it. She said “I have prayed and prayed for God to take this from me and He just wont.”

As she spoke God said to me “Tell her about the thorn.”

I said “Have you ever read about the thorn in Paul’s flesh?” We turned to 2 Corinthians 12 and started studying that scripture and by the end even I had God goosebumps as I knew this message was for her, me, and for someone who reads the blog as well. Maybe this is for you.

In this scripture Paul talks about how he was given a thorn in his flesh. He actually refers to it as a messenger of Satan put there to torment him. No one knows exactly what the thorn represented, but we know it was ever present and painful. He prayed and he prayed for God to remove it from him…

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. ⁸ Three times I pleaded with the Lord to take it away from me. ⁹ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Is there something in your life that causes you DAILY pain? Something that you feel with every movement throughout the day? What is the thorn in your flesh? What have you prayed for God to take from you, but it just won’t budge from your life?

As I read verse 9 with my teenager friend I started crying, as I heard God saying these words to me… “My grace is sufficient for you, for my power is made perfect in weakness.”

He acknowledged the struggle. He acknowledged the pain. He didn’t chastise Paul for his complaining, but rather he acknowledged the thorn. And He reminded me that it is in those weak moments when I am empty that God’s power can be seen. It is in those moments when I have nothing left…when I am limp and powerless… that God steps in and strengthens me with a light that can only be His.

His power is made PERFECT in our weakness. 

Without my weaknesses, God is not needed in my life. 

And then Paul goes on to say that he will boast about his weaknesses. What a slap in the face to the devil. I think back to the words of Joseph in Genesis 50: “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”

I started thinking about my life with Malachi and Levi. Speaking transparently, their level of care is the thorn in my flesh. Mentally and physically keeping them alive, healthy, and happy is a true struggle and challenge. I have prayed over and over again for God to heal them completely…

But His grace alone is sufficient. And God’s power is absolutely made perfect in my weakness.

Oh what things I imagine the devil predicted would happen when he hit Jake and I with each of our challenges…each of our thorns. And like Joseph, I see that those things the devil thought would break us and cause us to turn from God have only been used BY God for glorious things.

I look at my life and see how I have been stripped down. My ability to control my life is gone. I live day by day, praying that tomorrow will be the day that my sons are healed. And each day I have to learn how to deal with disappointment that God hasn’t healed them. But oh my goodness, how this life has taught me to rely on Christ’s power.

His power is made perfect in my weakness.

So like Paul, I am thankful for my thorns. I am thankful that I have been given such a challenge, because it requires that I stay close to God. Every time my knees grow weak, like this week in the MRI room, He is there to catch me and renew my strength.

What a blessing it is to be given daily reminders of the necessity of walking with God.

“For when I am weak, then I am strong.”

WOW that sentence holds some power.

I hope this week you are able to see your thorns in a new light. I pray that God is able to touch your soul as He whispers “My grace is sufficient for you, for my power is made perfect in weakness.” I hope you are able to see your weakness as a blessing, and that it sends you falling into the arms of our loving God.

Please continue to pray for our family, and join me in praying daily for my sons to be made whole. God’s power is also made perfect in their weaknesses….in Levi’s struggle to breathe, in Malachi’s struggles with epilepsy and body. I see God work through their weaknesses to touch my soul. Pray that He continues to use their lives to manifest Himself here on earth.

Much love,

Leah