When Germs Attack

The first sickness of the school year swooped in quickly this year; Jake was diagnosed with strep on Friday afternoon. YIKES! He called to tell me his throat felt funny and I immediately got out our rubber gloves and hospital grade sanitizer and started playing the “What would Jake do” game. In this game I re-enact a typical day for Jake and sanitize every possible thing he may have touched, coughed on, or infected. There are things most of you typical people wouldn’t even think of…car door handles, seat belt buttons, hangers in the closet, phone chargers…the whole process takes several hours.

And then we made our sickness plan. Strep throat can knock Malachi down pretty quickly and Levi has yet to be sick but we are told to expect an ICU stay and to likely be put on the ventilator. So I did the only thing that made sense…I packed him a bag and sent him to a hotel for the weekend. He has been on antibiotics for 3 days but we just want to be extra careful.

We just so happened to be having family from Ohio come and stay with us for the weekend too. We called and explained the situation and they weren’t deterred by the possibility of being in a strep exposed house. We have been having a wonderful weekend together and hopefully Jake will feel well enough to join us again tomorrow. So far the boys and I have remained healthy!

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Leading up to our strep attack, we had a jam packed week of appointments. We started off with physical therapy for Levi, hippotherapy for Malachi, oxygen tank deliveries, pediatrician wellness checks, 4 trips to the pharmacy, insurance calls, and GI appointments for each boy…I also successfully navigated a Target shopping trip and a grocery store run with the wheelchair stroller and pulling a cart! Like a boss. There were so many days this week I felt like high-fiving myself…we are figuring this whole thing out.

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Levi is 15 pounds 6 ounces and getting way fewer calories than recommended so we have increased his volume. He is fed using a pump that continuously (for 18 hours a day) flows formula through his g-tube so increasing his food is as simple as pushing a few buttons on his pump. BUT we do have to make sure his belly can tolerate the change and stretch accordingly. We are easing into the increase and he has not handled it well so far with lots of spitting up.

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Malachi is still at 25 pounds, but looks healthier. We initiated the dreaded g-tube talk and will be going to speak with the surgeon and set a date in a few weeks. We would like to get the tube placed so it can be used to administer medications for his big upcoming hip/feet surgery in November. We are also hoping that it will help with seizure management as most of his seizures are caused by pressure in his belly. If we have a way to vent that air out it may help in the long run.

I scheduled an appointment this week with Levi’s pediatrician after we noticed that one of his eyes has been getting a little wonky. It looks like we are dealing with some form of strabismus so we will now be adding pediatric ophthalmologist to the list of specialists for Levi. That’s good because we have been a little bored lately with not much else going on in our lives…haha. Hope you can sense the sarcasm through the keyboard.

He has been hilarious this week. I woke up yesterday morning to this little goofball:

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I got a call this week from the pulmonologist’s office that went like this: “Hello sweetie, I am looking for the parent of Levi Carroll. Dr. _________ has received his sleep study results and asked if you could come in on Tuesday at 8:45 to discuss the results?”

I have played that conversation over and over again in my head (especially the “sweetie” comment) trying to decide if that is a good thing, a bad thing, or a protocol thing. And then I “Leah”ed it and got panicky. I won’t divulge my sources but by the end of the day I got a copy of the sleep study and did my best to interpret the results using friends, google, and optimism. To my untrained eye it didn’t look horrendous. But we will find out how he thinks we need to proceed on Tuesday. I will give you more details about the results next week.

Here is a sweet video of Levi’s new syllables:

Malachi sat next to Levi at lunch this week and kept reaching his hand out to find Levi’s. Watching their special bond melts my heart so much. If I tell Malachi that Levi is watching him he will puff his chest out and do whatever his is doing ten times more exuberantly. We always talk to him about how he is setting such a good example for his baby brother and teaching him things (like how to drink a bottle like a big boy, etc).

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I have had some emotional moments this week and they have really made me think. Friday night I was sitting on the couch holding my beautiful son Malachi and felt so drawn to pray over him. I told Malachi that we were going to say a prayer to God and his eyes widened with excitement. He LOVES when we pray. I spoke the words out loud and as I declared “Lord, heal him and make him whole” I looked at his face, staring in anticipation back at me, and I was struck with a pang of guilt.

As I have told you before, Malachi’s receptive language is pretty phenomenal. He understands so much more than we realize. And as I looked at his sweet face I started to wonder what he thought of my words to God. I thought about how confused he must be to hear mommy ask God to make him whole. I could hear him saying “Mommy, am I broken? Mommy, am I sick?” and I just got so emotional.

My petitions and pleas turned into prayers of praise as I thanked God for all of the beautiful things about Malachi. He listened and clung to each word.

This is the only life and body that Malachi has ever known. To him this is his normal. I would never want him to feel “less than” or imperfect.

So it started making me question my prayers over him and Levi. Should I be praying to God that they be made whole? And I feel in my heart that I absolutely should be.

But I also feel in my heart that God desires us to find beauty in all that we have been given…even the things that we never expected. Even the things that don’t come in beautiful and predictable packages.

While I desire for Malachi and Levi to be made whole, I am overwhelmingly thankful for the favor God has given us through them. We have the privilege to see the joy of the Lord reflected on our 5 year old sons face each and every day. We have witnessed firsthand the provisional hands of God meeting our needs before they become burdens. God has gifted us supernatural measures of faith that has carried us through some tough news and dark times.

God has given my non-verbal (for now) sons a voice, an audience, and a mission. So while I desire SO GREATLY that God hears and answers my prayers that they be made whole, I also recognize and trust that they are perfectly imperfect for this exact moment in time for a reason. God works through our imperfections, so we will call our family blessed that we have an abundance of those for Him to perfect!

Much love,

Leah

 

Studying Sleep

A few feel good notes before we jump into the sleep study summary! First of all, I have been really trying to focus on teaching Malachi things lately to figure out what he is capable of retaining. Time and time again he reminds me that he is not only ready and willing, but very capable of learning! This week we focused on being able to determine someone’s gender. I would give him the name of someone he knew and he would tell me if that person was a boy or a girl using his switch. It only took about 5 minutes for him to get it and he is a about 99% accurate! I took a video for you all:

Levi is a wild man. He has mastered the art of rolling which is such great news. But the wires make life a bit more challenging. Within seconds of me putting him on the ground to play he usually has one or both of his tubes wrapped around his neck. He also managed to pull the IV tower down on himself this week, so that is a new challenge added to the list. A very kind friend donated a feeding pump backpack to us so we may have to give it a try to see if we can eliminate one of those wires being accessible.

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Levi is also learning some new syllables which is such a joy to hear. The “D” and the “G” have been his favorites this week.

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Levi loves to put things in his mouth, which is great for getting rid of any oral aversions he has. This week while the boys were playing Malachi got his hand close to Levi’s mouth and he decided to borrow his thumb for a bit. Malachi thought it was funny and kept sticking his thumb in Levi’s mouth. What a great fine motor therapy exercise for Malachi haha.

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Jake and I had the rare opportunity to go on a date this week! Malachi and Levi’s physical therapist offered to watch the boys so we could go out to dinner, and who is more qualified than someone that spends 1.5 hours with them each week? It was the oddest feeling for us to be away from them, but it definitely was refreshing to have some time for us.

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And one more silly video for you:

On to the sleep study…

The closer we got to the scheduled appointment the more I started to realize the misery that was about to take place and that feeling of doom started looming over me. SOOOOO much of our lives is a mental game. My mind is always a battlefield; I have to continually remind myself to stay positive and just get it over with. So off to the hospital Levi and I went.

Our scheduled time was right around a shift change so the walk in was like a mini family reunion as we stopped and had conversations with doctors, nurse practitioners, and nurses who have taken care of one or both of the boys in the past. Another mental game for me….part of me loves that we know all these wonderful, life saving people and the other part of me is so sad that my boys have to know this “world”. That our paths have to cross with so many people in the medical field. It is hard to explain.

The mental game continued as I checked us in for the appointment. Here’s a helpful little tid bit for you…if you go to the hospital anytime after 5, everyone is required to check in through the same desk inside the emergency room. Children with the flu, bubonic plague, sleep studies…all sharing the same pens and counter space. We learned this lesson a few years back and it made me so upset that I called the hospital board and pleaded our case. I was shocked when I checked in two weeks later and they had actually listened to my worries and made a change. But unfortunately we were back inside sick land with a healthy child. These moments make me so anxious. And of course there was a computer error while we were checking in so the process took 20 loooong minutes, still sandwiched between some pretty sick looking children.

We were escorted up to the floor and headed towards our room. The mental game here went into overtime as we passed rooms I have stayed with Malachi in the past. I passed the ICU double doors that Malachi spent significant time in when he got the flu and pneumonia around his first birthday. I remember having to take a big deep breath each time before I walked through them. I passed the room we stayed in for 7 long days when Malachi developed infantile spasms, the room after heart surgery, the room for his overnight EEG….

My mind and emotions were at war. Then I remembered when Malachi was in some of these rooms he was one sick little boy, and here I was pushing my healthy yet fragile child through the hallways surrounded by very sick kids. I could feel my stability slipping away.

We finally got to our room at the end of the hallway and started the process for the sleep study. There were some miscommunications about what this study was to focus on…let me try to explain that a bit:

Neurology in Chattanooga: there is only one doctor in the hospital certified to administer and analyze sleep studies, and he is a neurologist. We are not a patient of this doctor nor have we ever met him.

Pulmonology in Chattanooga: this doctor is the one who actually ordered the sleep study. He is our local connection in case anything goes wrong with Levi and knows him well. We really trust this guy.

ENT in Cincinnati: they are VERY curious about the results of this study and will be using the information to determine the need for a trach. One of the big things they are wanting to analyze is his carbon dioxide retention. The results will be forwarded to them.

That information may help you understand our dilemma a bit better.

So the tech came in and explained that the neurologist (the one who has never met Levi) decided that this sleep study was to be done with Levi completely off of oxygen. This bothered me, as the goal right now is NOT to get Levi off of oxygen. We are wanting to see if the interventions we are doing now are enough for Levi to breathe safely.

In my mind, we were setting him up for failure/trach if we are removing all interventions and expecting him to pass. We KNOW his vocal cords are paralyzed and therefore are an obstruction to his airway. We KNOW when he is not on oxygen that his saturation dips down. We don’t need to hook him to an insane amount of wires and spend the night in the hospital to prove that. My biggest fear is that this test would be administered incorrectly (through the eyes of ENT and Pulmonology) and we would have to repeat this darn thing all over again. So I did the annoying thing and told them we would not proceed until they spoke directly with our pulmonologist.

The tech made some phone calls and after speaking with pulmonology they decided to do a split study, three hours off oxygen (or as long as he could manage it safely) and three hours on. That seemed more reasonable and it came from someone we know so I agreed.

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It took almost an hour to get all the wires and leads on Levi who was a crying mess. She made me take his oxygen off during this time and I was SO WORRIED that he was using all of his reserve and would be starting the study with an already exhausted respiratory system. Once I was cleared to get my hands on him I strapped his oxygen back on and told the tech that he needed to recover before we would start the test.

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Levi made it a whopping 45 minutes off oxygen and during that time he had 27 spells of hypopnea (slow and shallow breathing with a dip of more than 3% points in a short period of time…like 94% to 91%). Summary: that is not good. While he didn’t have any apnea (stop breathing) spells, this is still not good for his heart and his brain development. His oxygen saturation OFF oxygen hung around 93.

The oxygen went back on for the rest of the study and with that tiny 1/8 liter intervention he stayed at 98-99% for his oxygen saturation. We won’t get the results back for a few weeks but I studied that computer screen/numbers pretty intensely and he wasn’t having more than a handful of hypopnea spells each hour. The average was reading 10/hour by the time we left but that included the insane 27 recorded when he was off oxygen so I really don’t know what to think. I did not see any true apnea spells, but that doesn’t mean they didn’t happen.

And the BEST part is that his carbon dioxide retention was normal!! He stayed in the 35-45 range consistently. Anything above 50 is a little dangerous.

Levi was miserable. It was the most miserable I have seen him since the NICU and it broke my heart a bit. I couldn’t really hold him with all the leads and wires, and he was just so uncomfortable. He woke up after an hour of sleep and the crying started all over again. At 2am he projectile vomited all over himself and when I called the tech to see what we could do about changing him she said that there was nothing we could do unless we wanted to start the study all over again. He was wire/glue covered, puke covered, and extremely uncomfortable.

I guess we will find out in a few weeks what the next steps will be. I am not really confident either direction, and still a little anxious. I am not quite sure who will give us the results and what this will mean for Levi. We were both very happy at 5am when we got to leave.

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We got home just in time for Jake to help with a bath and glue removal before he headed off to work for his first day back.

The rest of our week was a busy one with a youth group back to school party, an all day soccer tournament, and just plain ol’ life. I attempted a Walmart trip with the boys to get some food for Malachi and that didn’t last long. Malachi had a large meltdown in the middle of the pretzel aisle that he just couldn’t seem to recover from so we headed toward the checkout. He got a balloon out of it so he was happy haha.

So let’s talk about expectations. They really are getting me in trouble these days. I EXPECT Jake to get something done and it doesn’t happen the way I envisioned. I EXPECT Malachi to be able to eat his bottle in a specified amount of time. I EXPECT doctor appointments to be a certain number of hours. And when those expectations aren’t met I get so incredibly mad.

Maybe it is a control issue. Maybe it is just my personality. But my goodness do I have a load of expectations.

One of the things I have always been big on is the Golden Rule: Do unto others as you would have them do unto you. I remember learning the lesson when I was younger that this rule isn’t something that everyone follows and being so disappointed.

So are expectations good, bad, neither, both? I honestly still don’t know. But I do know that the Christian life is about surrendering. It is about releasing things- BIG things and small things- to God. And for me personally, that means my expectations for how I think God should intervene and act in my life need to stop.

Because with expectations comes disappointments, and that is where sin can easily slide in. I don’t know about you, but disappointment brews inside of me. I stew on it until it morphs into something ugly, like anger or bitterness towards someone or something.

Are expectations bad? No. Is disappointment a sin? No. But our reactions to those outcomes are what gets our mind into trouble. The Bible tells us if you hand causes you to sin then cut it off! Obviously that is not meant literally. But the concept certainly applies here. Expectations cause me to sin with my angry, bitter heart so I need to cut them off!

So for this week I am focusing my prayers and attention on simply trusting that God has my family’s future already drawn out, and undoubtedly it will bring him glory. It may lead to some earthly suffering- physically, mentally, and emotionally- but in the end His name will be glorified.

My only expectations this week will be ones promised to me in scripture. I have been talking to Malachi this week about the new body that God will have for him when he gets to heaven. I have talked to him about all of the fun things he and I will do, and how we will sing praises to God together. He smiles from ear to ear when we talk about God. What a beautiful and glorious pain free life that will be for both of my sons.

2 Corinthians 5: 2-5, 9

We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. For we will put on heavenly bodies; we will not be spirits without bodies. While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit.

So whether we are here in this body or away from this body, our goal is to please him.

So this week, I will choose to focus less on expectations and more on pleasing the Lord. Isn’t that the way it should be?

God bless,

Leah

This Is The Way

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.

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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:

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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:

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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.

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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.

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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?

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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:

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“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.

We talked about how different this child would be…how it would feel to take him home after just a few days in the hospital instead of the 4 months big brother took growing and healing before we got to bring him home.

We talked about how odd it would feel to have a healthy child that didn’t have to be at the doctor all the time. A child that wouldn’t have to go through the pain of surgery after surgery to try to fix brokenness.

We talked about how this child would get to witness the testimony of his medically complex brother and how it would shape him to be a caring and special man. We never dreamed that he would have a testimony all of his own before the age of 1.

Levi was supposed to be easy. He was supposed to be healthy. He was supposed to be “normal”. Instead, Levi has surpassed Malachi’s NICU stay and has blown past his surgery count.

And as I prepared his bath this morning and spent 20 minutes gathering his medical equipment- things he literally can’t live without- the pain of unmet expectations hit me hard.

This verse talks about the bread of adversity and the water of affliction. And as I read that line I heard my heart pleading “YES Lord. Why does our bread and water taste so different than everyone else’s? Why can’t we get the manna you send to others? Why do we have to be…well, different?” The pain of seeing my children suffer is something I can’t put into words.

But then comes the next line. The line that reminds me that God’s plan is greater than the dreams I had for normal.

“This is the way; walk in it.”

So simple. So direct. So eye-opening.

We aren’t supposed to have “expectations” for God, with the exception of expecting God to move in our lives. And oh boy, He sure does move in the Carroll family.

So as I look at this picture- this photo that represents my unmet expectations and my shattered dreams…again- I hear the voice of my God saying “This is the way; walk in it.” And I put my unique and complicated child into that tub and reminded myself that each time we take a step of faith and rely on God to get us through the next 60 seconds we bring glory to His name.

And I continue to believe that God’s dreams and plans for my children is so much greater than my pleas for normalcy.

 

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

 

 

Identity Crisis

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.

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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.

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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.

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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.

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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.

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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.

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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

 

God’s Handiwork

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.

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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.

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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

 

 

 

 

When I Am Weak

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.

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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.

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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!

 

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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!

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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. Three times I pleaded with the Lord to take it away from me. 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

 

 

 

 

 

He Equips The Called

Call me crazy, call me courageous, call me utterly stupid but I am writing this blog post from a hotel room in South Carolina- alone with both of the boys. Tonight has been exceptionally exciting but more on that in a minute.

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Each year we take our youth group to an amazing summer camp about 4 hours away in South Carolina. Malachi and I have gone every year, and while I strongly desired to go this year we decided that it would be too logistically and physically difficult with both boys.

Then Wednesday night rolled around and as I taught the youth lesson I felt like God was telling me to go. Their spiritual health is more important than my comfort. So I went home, found a hotel room close by with a fridge and a sink, and started to pack our bags. 10 tanks of oxygen, food supplies for everyone, ice packs, Tomato seat for Malachi, rock-n-play for Levi, medical machines, worst case scenario kits, freshly printed updated medical histories for both boys in case of emergencies…all packed in such a way that I could get the boys and the gear into the hotel alone in just a few short trips.

 

I kept telling Jake that if God called me to go to camp, then God would also provide the energy needed to survive it.

 

So far that has been the case! Last night was a chaotic one with us staying at the camp until nearly midnight . By the time I got the boys back to the hotel room they were wide awake so we watched cartoons and played until 1:30. Jake is staying at camp with the other 20 kids and chaperones from our group, so I have some help during the daytime.

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Then the snafu in my planning- because I booked the hotel so late I was only able to get a room on the second floor- a handicap parent’s nightmare. As we checked in I thought about the safety of the boys in case of fire emergency and felt confident I could carry them both, clumsily but doable. What I didn’t figure into the equation was power outages…and of course in life’s funny way the power went out first thing this morning. After several hours of Elmo music on my phone and still no power (which equals no elevator to leave) I called for reinforcements and Jake and the chaperones drove over to help me cart the boys and their gear down the stairs.

Then came tonight’s adventure. You may not know this about me but there are a few things that absolutely give me the heebie-jeebies. One of those is hotel rooms. When we got to the room on Friday I used an entire canister of Clorox wipes, cleaning every surface we could possibly come into contact with. I took my own rubber gloves and checked for bed bugs. I also used the rubber gloves to fold up the comforter and place it away from me and the boys. I wore my shoes the entire time and if anything touched the floor it went into the “contaminated” pile.

Was that overkill- yes, very likely so. But with my special boys I didn’t want to take any chances.

Now fastforward to tonight. We had a great day at camp! Tonight I got to spend some time with our group and I was so encouraged to hear how God is working in their lives! I stayed later than I intended to and got to the hotel just after midnight.

I wheeled the boys in and went to set my bag down and there it was…sitting on the sheets of the bed was a giant, single rat turd. Mmmhmmm you read that right.

One of the top thing on my phobias list is rats. And with Malachi and Levi in the room I knew I would never be able to close my eyes knowing there could still be one in the room. So I packed up (an hour long process) got a refund for the night and drove 20 more minutes in the wrong direction to find a nicer hotel. There I had to do the exhausting process again of carting all the gear in and unpacking. It is now 2:30 am and I just got both of the boys in their PJs!

You can’t make this stuff up.

Alright, back to camp. The biggest issue on my radar here is Malachi’s body temperature as he has been struggling this summer. Thanks to some battery operated clip on fans and a cooling towel he has been handling it well.

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I have been thinking back to the last several summers at youth camp. The first two years were a “true challenge” as it was one of the first times I had taken Malachi alone on a trip. Then last year rolled around and the “true challenge” was managing en ever growing Malachi in addition to being pregnant. Now this year the “true challenge” has been amped up as I attempt this with two medically needy children, one of which is a illogical 7 month old.

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As I thought about our history here it was such a reminder of the way God works. Jake and I often reach a point in which exasperatingly we say “We just can’t handle anything else!”

Yet God continues to challenge us. And with each challenge He equips us even more for the difficult tasks He gives us.

That is one of the beautiful things about God- that He equips the called. You don’t need prior experience or a shining resume to be used for something great.

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As far as pre-camp updates, we are still on the road for medical and therapy appointments nearly every day. This week was the much anticipated feeding therapy appointment for Levi which went very well! So well, in fact, that we have been cleared to start attempting solids by mouth. They gave him a few bites of peas which he wasn’t too keen on but he ate it well without signs of aspiration.

We are learning that the Levi you read medical histories about is nowhere near the Levi that medical providers lay eyes on. We are continually surprising providers with a relatively typical child- PRAISE THE LORD!

Levi is still pretty loud with his stridor but is still managing his oxygen saturations very well!

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Last week I told you that I was munching on some scripture and still trying to grapple with it before I shared my thoughts with you. Well, unfortunately I haven’t come to a good conclusion quite yet but still think I need to share it with you…maybe it will give you some thoughts to munch on when you are driving this week.

In the Old Testament (2 Kings 4:8-37) we read about a nameless woman. The Bible only refers to her as the Shunammite woman. When the prophet Elisha walked into town she provided him with a meal to eat. Each time he came into the city she offered him a meal. One day she told her husband that she perceived that Elisha was a man of God and felt that they should make a room for him to stay in whenever he came to town. Such a kind gesture of hospitality…I have no problem with the story up until this point.

One day Elisha is in that room and he tells his servant to go and get the Shunammite woman. Out of gratitude he asks the woman if there is anything he can do to repay her kindness. She turns him down and says she is well taken care of. Later on Elisha is speaking to his servant:

14 “What can be done for her?” Elisha asked.

Gehazi said, “She has no son, and her husband is old.”

15 Then Elisha said, “Call her.” So he called her, and she stood in the doorway. 16 “About this time next year,” Elisha said, “you will hold a son in your arms.”

“No, my lord!” she objected. “Please, man of God, don’t mislead your servant!”

17 But the woman became pregnant, and the next year about that same time she gave birth to a son, just as Elisha had told her.

WOW what an awesome ending to that story! She was so humble, even turning down a blessing when the opportunity was provided for her to name her want/need.

But that isn’t the end of the story….

18 The child grew, and one day he went out to his father, who was with the reapers. 19 He said to his father, “My head! My head!”

His father told a servant, “Carry him to his mother.” 20 After the servant had lifted him up and carried him to his mother, the boy sat on her lap until noon, and then he died.

And this is where I struggle. This story has been playing over and over in my mind since Levi’s last surgery. God blessed this woman with her greatest desire- a son. This was a true, sincere miracle. A true blessing from God.

And then that blessing died. My momma heart feels the pain that she felt in that moment. And the confusion. How could God send her a blessing only to swiftly take it away years later.

And then I thought about Mary, the mother of Jesus. When the angel came to her he said: “Greetings, you who are highly favored! The Lord is with you.”

And in that account Mary was given a miracle…only to be taken in a brutal yet purposeful fashion from this earth before her very eyes.

So why did the Shunammite woman lose her special blessing? I think my difficult time with this scripture is due to the empathy I feel towards this woman. It should also be mentioned that at the end, Elijah raised her son back to life and all is well again.

Sometimes as Christians we look for that safety net. We look for signs that things are going to be just fine. We seek after security in our feelings through fruitless means. We think that when we are blessed and “highly favored” that surely nothing bad will happen to us.

But being a Christian has nothing to do with “protection” from challenges in life. It requires a daily walk with God, and leaning heavily on Him for strength when things don’t turn out as you would expect.

Oh my goodness I want so badly to write more but my eyes just can’t stay open and both boys are asleep.

Thank you all for checking on our family this week! Please continue praying for miracles for each boy and pray that until the miracles come God will send His angels to protect them.

Much love!

Leah

Walking On Water

So many medical, emotional, and surgical updates for you this week. It was definitely a week of ups and downs! But it is always nice to start with a super cute picture:

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We started this busy week off with a very hot Monday. It has officially turned to summer here in Tennessee and boy, do we have some major sunshine. I even got the chance to sit on the back deck alone for a glorious 30 minutes and read a Reader’s Digest I had been saving in the plastic wrapper for when I got some free time. I plopped down and ripped the plastic open and started laughing hysterically as I noted the cover was dated May 2013. I guess it has been that long since I have had “free time”. The articles were outdated but it was a wonderful 30 minutes.

We spent the morning at the soccer field and then headed into town for Malachi’s horse therapy. The time in the heat got to Malachi and when we got him home he was acting a little more lethargic than normal. I took his temperature but it was normal so we just watched him very carefully. Twenty minutes later I took his temp again as he looked a bit worse and it was already at 101 and rising. His brain struggles to regulate his temps so when he overheats he continues to do so very quickly. We stripped him down to his diaper and started trying to bring it down and by bedtime we had him back at a decent temp. We struggle with this every summer, but it was a bit alarming at how quickly this one came on.

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Tuesday was a busy day that started with a trip to the neurosurgeon (for Malachi) followed by the neurologist (for Levi). Not too many updates to share on those…Malachi will be having an MRI done in a few weeks to check his shunt to make sure it is working properly. And the doctor wants to do a repeat MRI on Levi when he turns two, so until then we will be followed on a bi-annual basis, assuming no seizure activity starts. He did label him as “Developmentally Delayed” since he isn’t reaching all the expected milestones, but we don’t put a whole lot of stock into labels in our family.

 

We were crammed in this tiny room with the boys and their gear for an hour an a half as we waited on the doctor. By the time we left we were all a little cranky.

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We ran the boys back home where they stayed with Jake while I ran to get an ultrasound done on my leg. The good news is that they could not find a blood clot. The bad news is that I am still experiencing pain in that leg and it is almost identical (in spot and sensation) to my previous blood clot. They felt confident that I did not have one and said the scan would show it if one was there. Any of you medical professionals have any ideas?

Wednesday Malachi got fitted for his new bath chair, which is absolutely perfect for him! It is so much more supportive than his other bath chair which makes it much safer. He spent 25 minutes playing in the shower the day it came in!

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And I thought you would be amused by this little monkey playing. He has been using only his feet to play with things lately, and this was no exception:

Then came Cincinnati. Dum Dum Dummmmmmm.

Anytime we go on a trip with either (or both) boys there has to be a whole lot of preparation. We have to pack and prepare for each worst case scenario. I loaded up the car late Wednesday evening with enough medical supplies and clothing for at least 4 days just in case we have to stay in Cincinnati longer than expected. We had a 12:45 appointment in Cincinnati so we woke up bright and early to make it there in time. We were on the road by 6am and pulled into the hospital parking lot at 12:30- a little too close for comfort! But Levi handled the drive very well.

We met with the pulmonologist who would be doing the bronchoscope (lung) portion of his procedure and talked through Levi’s medical history. This is always more difficult than it sounds and many of the doctors we speak to don’t understand why we so adamantly wanted to avoid the trach, and I always feel the need to defend our decision making. But here is the biggest point we bring up when that question is asked…

There is a 50% chance his vocal cords will never wake up and he will have to keep the trach for the rest of his life. We are making decisions based on him being in that category and trying to avoid a lifelong trach for Levi. Yes, trachs can be wonderful lifesaving devices but also bring a complicated and restricted life along with them. Like we have said before, we are simply trying our best to preserve his normal.

Many of the procedures we have tried have to be done before the age of 9 months when his airway becomes less pliable. Yes, this journey has been exceptionally rough on Levi but we still don’t regret trying to give him a shot at a trach free life and exhaust every other avenue possible.

After the appointment with the pulmonologist we had just enough time for a visit with my grandmother, dinner with my dad and younger siblings, then settled in for the evening.

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I knew I needed to get a good night’s rest before our hospital stay but I just couldn’t seem to get my mind to shut off for the night. With Malachi’s medical journey I was always somehow able to keep the stress from physically affecting me. But with Levi’s journey I am a complete and total wreck. As I laid there I couldn’t stop thinking about what they were going to find or what they were about to tell me. It is the unpredictability of the situation that seems to be messing with my emotions. When I finally would fall asleep I would wake up 20 minutes later in a panic. Finally morning rolled around at we got up at 5am to get the day over with.

I did realize this week that I seem to be struggling with some PTSD more than I thought. There were so many triggers, many of which I did not see coming. Simple things like the floor tiles…as I wheeled Levi down the main hallway I was looking at the floor which was colorful with fun patterns and for some reason my mind remembered those stupid tiles and my knees buckled. I immediately felt like I was about to vomit and had to sit down. The room was spinning and I started to sweat. I felt ridiculous and petty but just couldn’t seem to get a grip. There were so many of these moments this trip and I felt a little out of control emotionally. My stomach is still a mess from the nerves.

Levi and I prayed, sang, played, read the Bible, and napped while we waited patiently for his turn in the operating room. After 3 hours cooped up in a pre-op room it was finally his turn and off we went. I know I always say this, but there is just something so nauseating about walking your child to an operating room and kissing him goodbye as you hand him off to strangers.

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I left his beloved raccoon toy with him so he would have something familiar there when he woke up, then walked alone down the hall towards the waiting room pushing an empty stroller. I felt the tears coming, but once I open that gate it is difficult to shut so I stuffed those emotions deep down inside of me and kept walking.

I checked in at the surgery desk and before I said my name she knew it…I looked at her quizzically and she said “We remember you!” I wasn’t sure whether to take that as compliment haha. But the truth is, I know their names too. I hate that. I hate that we know so many hospital employees. I hate that we know routines. I hate that we know which elevator to take without stopping by the information desk. I hate that we know which bathroom is the cleanest. I hate that we know to eat from the salad bar at 11 when the food is the freshest and the line is the shortest. Sometimes being a frequent flyer isn’t a good thing.

When Levi is in surgery I wait in a large room with several other families. I am a people watcher, which always helps pass the time. Most of the time there is at least one “Team” there for a single patient- they always wear matching shirts and have all kinds of goodies for the child when they come out of surgery. Then you have the “pacers” who are so anxious they can’t sit down. The largest group you find are the people that sit closest to the outlets and fiddle with their phones trying to keep their mind off of things. You have the “sleepers” who look like they are actually sleeping, but we all know there is no way to close your eyes and actually sleep when your child is in surgery. And there are the anxious ones…like me…who can’t sit still and find different things to pass the time, like people watch. I always make sure to clip my fingernails before a surgery or I unknowingly do some damage.

When the surgeon has an update on your child they call your last name over the intercom and you go up to the little desk in the front of the room. From there you are either directed to a phone where the surgeon is waiting to speak to you or they send you into one of the six small rooms that each contain chairs and a whiteboard. You enter in doors from the waiting room side and the surgeon comes in through a door off the operating room hallway.

During Levi’s procedures I get called into these rooms frequently and often as I have to speak with each of the teams involved…anesthesia, pulomonology, ENT. After each meeting you go back out into the main waiting area until they call your name to go back to the recovery room with your kid. It always breaks my heart when parents come out of those little rooms and their faces clearly show they did not get the news they had hoped.

It really is a hard environment to be in. Surrounded by people just like me that hate to see their child having to go through something so painful. The recovery room is just as bad as it is a large area with walled off curtain slots for each patient and their parents. Hearing children wake up from anesthesia will make your stomach churn. Levi does not wake up from anesthesia well and with his stridor we tend to turn lots of heads.

So here is what we learned about Levi’s airway:

Good news: His airway is as wide as it was last time! That is wonderful to hear. The piece of his rib that they used to prop his vocal cords open looks like it has stayed in place and his airway was “wide enough to pull a truck through” as one doctor put it. They put a balloon in there to dilate it but it is already larger than the balloon so the dilation did nothing.

Bad news: his epiglottis and arytenoids were grown back up and needed to be trimmed, a procedure called a supraglottoplasty. If you remember, this was the exact same procedure we did in January. When he had it done the first time I asked them if this was something they would have to do again in the future and they said no. But it looks like the cartilage grew back (shocking all the doctors) and the procedure was repeated. Here is a visual of what they trimmed.

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So we have now surgically done all we can to allow Levi to remain trach free. His airway is wide open, and the area around the airway is as unobstructed as we can get it. So have we done enough for him to breathe safely?

The team has come up with a list of three things that have to happen for him to be able to continue to avoid the trach.

  1. Continue to grow. The fear is that his work of breathing is burning too many calories and will stunt his growth. So far this is not an issue and he is gaining weight like a champ. He is 7 months and 14 pounds (he started at 4 pounds 8 ounces).
  2. Get sick safely. This one sounds silly but makes sense. The thought is that when Levi gets a cold or another respiratory sickness that the swelling will cut off his air supply. If this happens he will likely end up in the ICU and back on the ventilator. But we won’t know for sure how his airway will react until that first major sickness hits.
  3. Pass a sleep study. Levi is maintaining his oxygen well during awake times but at night will dip down without the nasal cannula. When we have him on 1/8th of a liter of oxygen he is fine at night. They are afraid that he is not expelling enough of his carbon dioxide when he sleeps which can cause his brain to not develop properly. The only way to check this is to stay the night in the hospital hooked up to some major equipment. We have schedule his sleep study for July 31st and need some major prayers that he will pass it!

The doctor was a little concerned that he would need to spend the night in the ICU as he was one cranky boy, but with the amount of trimming they did it makes sense that he would be in pain. We Face Timed with dad and brother, hoping that would distract him from crying which worked for a bit.

 

We were taken to the complex airway floor where Levi screamed off and on throughout the afternoon and evening and finally settled out around 2am. I have been on high alert from the stupid bear (who hasn’t been back since we prepped the shot gun) so every time I heard a noise I woke up ready to run for the gun. We were right in front of the noisy nurse’s station so that happened more times than I would like to admit.

We got a few hours of rough sleep in and woke up at 6:30 and spoke with the doctors about discharge. By 7:30 we were on the road! I stopped for a quick breakfast with Jake’s parents (aka caffeine for a very tired momma) then raced back to Tennessee.

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Levi has been in pain but is slowly getting better. His stridor is louder but we were told to expect that since the area would be very swollen.

He did enjoy a nice post-hospital stay bath this afternoon.

While Levi and I were in Ohio, Jake and Malachi enjoyed some big adventures- something I think Malachi really needed. They went to the bowling alley one day and the playground another. The one on one time was good for him. I snapped this picture last week and noticed it had some of that jealousy I have been telling you about.

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There is a wonderful thing happening locally here starting in October! A special needs mom in the community has started an organization that hosts programs and events for children with disabilities. They will be kicking off with an indoor soccer league in the fall and Malachi will be participating! Oh how he will love the fun that league will bring, and it will be something that is “just his” which he needs right now. And the added bonus is that they will be using the gym facilities at out church so it will be five minutes down the road!

As far as devotional thoughts go, I have been mentally munching on some biggies. But I still haven’t sorted them out quite yet. God laid 1 Kings 7 on my heart the morning of surgery and I listened to it on my drive. There are so many confusing things about that chapter so I will continue to process and pray about it before I share that with you!

But he also reminded me of the story of Peter walking on water. It is a common story, and one that is pretty easy to decipher, but I think I needed to be reminded of it this week.

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“Come,” he said. Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”  Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

Have you ever almost drowned? I remember jumping into my grandparent’s pool as a child and looking up from the bottom of the pool. I remember seeing the ladder but realizing that it didn’t go much further than two feet from the surface of the water and panic swept over me. Thankfully I was pulled out of the water quickly that day and didn’t drown.

But that feeling can be crippling. You freeze and panic, not sure what to do to get out of the situation safely. This week in Cincinnati I truly felt like I was drowning. I felt physical  pressure all over my body as I entered that building again. My body was telling me not to keep walking, but I don’t have the luxury of being able to tell it no as my son has to be there. I had to focus on taking big, deep breaths and fight dizziness that threatened to take me to the ground.

When I picture Peter in this story, I see him stepping out of that boat with a look of confidence and determination on his face. Jesus had told him to step out of the boat, and he obeyed. But a few confident and sure steps into that journey he thought about the reality of the situation and panicked. He saw the that the odds were stacked against him as the wind pushed against his body. And he started to sink.

Can you relate with that like I can? Stepping so confidently into something….so sure that God directed you to do so. Then questioning it like crazy?

Like Peter, sometimes God challenges us to attempt the impossible. Sometimes we are asked to walk on water. And if that task alone wasn’t daunting, we are often met with outside forces like the wind and the waves that threaten to take us down.

But one thing I have to remember is that Jesus said “Come”.

I needed to be reminded this week that my strength in those moments needs to come from focusing on the face of God- the one who has called me into this challenging life. And even though the water moves and the wind blows, I can be assured that every step will be firm if I focus on Him. We must obey his firm yet loving command to get out of our comfort zone and walk in faith.

Because it is in those moments of fear that our faith is strengthened.

And even when we fail, as I am sure I did this week in Cincinnati, there is so much comfort in knowing that like Peter, Jesus will immediately catch me and keep me from drowning…as long as I stay close to Him. God’s grace is such a powerful thing.

Will you all join me starting this week in praying specifically over Levi’s airway when he sleeps? Pray that his levels of carbon dioxide and apnea stay in a safe range and that we will be able to avoid the trach at least for a few more years until we see if his vocal cords will wake up? Or better yet, let’s pray that his vocal cords wake up TODAY and all the medical professionals see God’s power! “Ephphatha” BE OPENED! Let’s declare this together over his airway.

Thank you for caring for our family. Our support system humbles us so much and is felt on weeks like this one.

Much love,

Leah

 

This Is The Way

Step by step. Day by day.

If you could see our calendar you would likely laugh out loud. Yes, it is full of appointments for the boys but it is also full with our other part time jobs (aka necessary income) as soccer coaches and youth pastors. There is a whole lot of color coding required for our whiteboard calendar haha. This week all of the roles we fill managed to collide in a messy and crazy way, but we came through mostly unscathed!

Honestly, Jake and I love both of these part time jobs even though it can be logistically challenging to do. We also feel so strongly in a solid work ethic and want to be able to give 100% to each and not allow child chaos to interfere with our ability to give each group our full attention. And so far the boys have always been up for the adventure!

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Sundays we get up bright and early and head to church.Yes, even when we are running on 3 hours of sleep. Church for us is not an obligation or something we want to check off the list. It is a much needed soul refresher for us as we get the chance to be around our Christian brothers and sisters and worship God together. What a blessing Sunday mornings can be if you allow them to.

A few Sundays a month I sing with the praise team which means Jake and I drive separate to church since I have to be there an hour early to practice. Yes, this is a challenge for us but we feel strongly that we are called to plug ourselves into our church body and serve where needed. We each take a kid and take on all medication, clothing, and feeding responsibilities for that kid. Sunday evenings we are back at church to teach the youth lesson.

Monday and Thursday mornings this summer we get up and head to the high school soccer field where we have optional open fields for the girls. We take the boys with us so we have to make sure everyone is medicated, fed, and changed before we leave.

Mondays we load up from soccer and head into town for Malachi’s horse therapy. This week we also had a dentist appointment for Malachi that afternoon. Then at 7pm I headed back into town to be a guest speaker at another church’s youth camp.

Tuesday morning we drive back into town to take Malachi to swim therapy which is immediately followed by Levi’s physical therapy. That afternoon I took the youth group to a local Christian concert from 5:30-midnight. Yikes that one was a challenge for my very tired mind!

Wednesday I hit the road to take Malachi to Vanderbilt- a trip that lasted about 13 hours total. We usually teach the youth on Wednesday evenings but had to find someone to fill the spot this week. Jake and Levi stayed home and had some good bonding time!

The rest of the week was manageable with pharmacy runs, insurance calls, and trying to catch up on housework. We went to a birthday party on Saturday at a local park and Malachi had so much fun playing on the swings and slides!

Crazy, yes. And this coming week is just as intense. Which is why we always focus on taking life day by day.

Now to move on to medical updates…

Dentist: Little known fact- Malachi only has one real tooth. He has had some major dental surgery done and all the other teeth are capped. We go in periodically to have them checked and everything still looks good. We call his one final real tooth his “accountability tooth” as we assume they left it to see if we as parents could keep it cavity free haha. We passed the test and are good to go for another 6 months.

Brushing his teeth is like trying to brush the teeth of an alligator. But we do the best we can.

Vanderbilt: Malachi sees a wonderful orthopedic surgeon at Vanderbilt. We trust this man very much and, just like I suspected, he mentioned that it was time for surgery. Malachi’s feet are turning out and up again. This is a byproduct of his brain damage- his brain is telling his tendons to pull tighter and it is starting to change the anatomy of his bone structure in his foot. Those bones don’t “permanently solidify” for a few more years so now is the time to do some molding and reconstructing.

In December we will be doing heel cord releases in both of Malachi’s feet and possibly in one of his hips. His hips are both 100% out of socket, another mis-communication from his brain to his tendons. The left hip is much higher than the right so while he is under we are considering trying to loosen that up a bit. Each surgery site will have to be cut open and each tendon cut and sewn back together. He will be in casts for about 4 weeks.

We have gone soooo long without a surgery for Malachi and I am so disappointed to hear that word again for him. But I also want to make sure that Malachi is comfortable and not in long term pain so I see the need for this one to happen.

The truth is, as Malachi’s life goes on he will continue to develop more issues with his health. While we have had a wonderful break from medical interventions for him, this appointment was my reality check.

Malachi was fitted for a scoliosis brace last visit and when we put it on him the pressure put him into some major seizures and projectile vomiting that lasted for 4 days. We decided we were done with that brace as it was not worth the brain sparks for him. I explained that to the surgeon this week and he understood our decision and supported it. Unfortunately his hips being out of socket are causing him to sit crooked, worsening his spine. It is something we are definitely trying to keep an eye on and will likely drive some major decisions in the near future regarding more surgeries.

Until December’s surgery comes Malachi is getting a break from his AFOs (leg braces). At this point they are doing more harm than good. So I went to Old Navy and let Malachi pick out some “big boy socks” and he was enthralled in the process. We got socks with bugs, sharks, stripes, and so much more. I give him two options every morning and he tells me which pair he wants to wear. When I put the first pair on him right after we bought them he was giddy with excitement and couldn’t stop giggling.

His little feet are so distorted and we always strive to preserve his dignity. When people look at Malachi we want them to see his beautiful smile and sparkling eyes and not be distracted by his physical differences. So until we straighten out those beautifully imperfect feet we will let him wear cool socks.

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We also ended the adventure with our annual trip to the Rainforest Cafe in Nashville. He has always enjoyed going there and listening to the jungle animals and noises. But this visit he was so engaged! He was making the noises back to the animals, roaring back at the tiger and screaming back to the elephants. I could see so much of a change in his imagination- it was really sweet to see. He also made some pretty amazing eye contact with me in the restaurant’s low light. That moment of recognition on his face always makes my heart flutter.

We have been working this week on spoon feeds and his communication device. I took this video to share with you:

We also played a whoooole lot this week. Malachi is re-discovering toys now that Levi wants to play with them. Yep- the jealous bug is still biting in our house. He also got to play with a special whistle rocket (a “big boy toy”) with daddy.

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He is all about being a big boy these days and getting to do things that Levi isn’t allowed to do yet. And he is still helping mommy babysit each morning. Such sweet boys.

Levi is still doing well! His personality is continuing to come out and he makes us laugh every day. He has a flirty smile he can flash at a moment’s notice and has been talking a lot this week. He is allowing me to hold him for longer periods of time, even up to 15 minutes!

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This week is a very big week for our boys. In addition to therapies, Malachi will see the neurosurgeon and Levi will see the neurologist. Malachi is also scheduled to get his new bath chair we have been so anxiously awaiting! Then on Thursday morning Levi and I will make the trip to Cincinnati and head straight to the hospital to meet with the pulmonologist who will be doing the bronchoscopy portion of Friday’s procedure. Our original plan was to take the whole family but we weren’t able to get a Ronald room for both nights and transporting gear multiple places in 48 hours sounds miserable, so Jake and Malachi will be staying in Tennessee. Levi and I will head to Children’s Friday morning to check in; it looks like his procedure will be around 11. We will stay that night in the hospital and our goal is to leave around breakfast time Saturday morning.

When we take him for these procedures we are never quite sure what they will find when they get in there. We are always asked to sign consent for several different medical procedures that they may decide to do after they see his airway. So he may need another supraglottoplasty (epiglottis trim), another balloon dilation, or maybe something new. We just won’t know until they get in to take a look.

This is operating room trip #20 for Levi. But it never gets easier.

As I mentioned earlier, this week I was given the opportunity to share a message with a group of teens from another church. Jake and I feel that God has given us a testimony that is meant to be shared, so when opportunities come our way we are so excited to get to share the things that God has done in our lives.

As I prepared what I wanted to share I thought back to my sophomore year of high school when the Lord used the book of Job to catch my attention. I had always thought the story of Job was very powerful but I remember reading the first few verses and my eyes were opened in new ways. I realized that Job was not only noticed by God, but God was pointing him out and bragging about him to the devil himself. As Job faced tragedy after tragedy he still praised the name of God. I remember reading that in high school and picturing the pride that must have beamed on God’s face as he watched Job praise him in spite of the devil’s attacks.

I remember being a young teenager and praying that I too would make God proud, regardless of any trials I went through. I prayed for a Job moment…a moment I would be tested….and I prayed that I would have the faith and strength needed to pass that test. I prayed that I would be able to be righteous just like Job.

And boy, oh boy, did I get my Job moment. Or should I say moments.

Whether or not I am passing that test, I won’t know until I see God face to face. But what a challenge it is to praise Him in the storm. I know many times I have failed. But I hope that my faith in some of those dark moments has given God something to smile about.

I have had a verse continually playing in my head over the last three days. I have no idea what sparked it into my brain, and honestly didn’t know the context until I took the time tonight to look it up.

It comes from Isaiah 30:

How gracious he will be when you cry for help! As soon as he hears, he will answer you. Although the Lord gives you the bread of adversity and the water of affliction, your teachers will be hidden no more; with your own eyes you will see them. 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.” 

There are a lot of things that spoke to me in this verse. God’s readiness and eagerness to comfort us when we are in need. The reminder that sometimes we are given adversity and affliction from the Lord…not as punishments but as opportunities to strengthen our faith and character. Like bread and water, these moments of affliction are necessary to strengthen us. But the biggest reminder for me in this verse comes from the last line…

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.” 

Jake and I walk daily down an unknown path. Often times that path is dark and we cannot see past the step we have just taken. We are called to a complete life of faith in God.

But this verse has brought me so much comfort this week, particularly as we have had to talk with surgeons for both of our precious boys.

No matter how dark our path may get, no matter how unknown the road will continue to be, God is with me. We face so many decisions and are pulled to the left and right by so many voices and opinions. But what a comfort we have in knowing that God’s voice will ring out louder than all the rest as He guides us. My prayer is that He continues to speak in such a commanding yet loving way and say “This is the way; walk in it.”

The New Testament references Christ as the Shepherd and us as the sheep. He says in John that “My sheep listen to my voice; I know them, and they follow me.”

But how many times do we drown out the voice of the Shepherd with our worry, our pride, our desire to control the situation, our false illusion that we know better,

When all it takes is listening for that voice of God. A voice that is ready and willing to guide us down a beautiful path that He has designed for us.

So as we take some big steps down our dark path this week I pray that I am able to drown out my fear and replace it with faith in the guidance of God. Faith over fear.

And I hope next week’s entry is full of good surgery reports!

Much love,

Leah

 

He Must Become Greater

Updates time! Every time I get ready to type a blog update I have to look back at the calendar to jog my memory about what we accomplished this week. We work on a day-to-day basis and once it gets checked off the list I tend to push it out of my brain to make room for more important things. But we managed to cram in a lot of activity over the last seven days.

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Malachi absolutely loved going to Vacation Bible School this week. We made sure to call it “VBS” instead of it’s formal name- we forgot a few times and his face lit up thinking he was going to get to go to school.

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Often when people look at Malachi they see him as a fragile little boy and don’t want to try too much with him. We always explain to people that he is very much a five year old boy who loves to talk about bodily functions (poop, farts, etc) and loves rough play. When water day at VBS rolled around I told them to soak him! They looked at me like I was joking, and I explained that we had prepped for the water and everything he was wearing and riding on could get wet. They sent me this video:

He made it 4 nights without having a single seizure at VBS and had just a short minute long one on the final day. At home he is only having about 2 a day which we are pleased with. He will go to the neurosurgeon next week and we will talk about these new seizure changes/types with him.

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We started summer therapies with both boys this week which kept us on the road Monday and Tuesday. Malachi had his first swim therapy lesson and he wasn’t so sure what to think. The whole concept seemed to confuse him but we think he will do better next week now that he has a frame of reference. Then immediately after Malachi’s water session, Levi had his first physical therapy session.

So far it seems that he is progressing at a decent pace. He isn’t too far off the mark as far as milestones go for his corrected age. This week he will hit 7 months old!

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We had a very frustrating appointment day this week that had me pretty riled up. A few weeks ago we met with Levi’s pulmonologist in Chattanooga for the first time since the NICU consult. That appointment went well- so well that he asked that I come back on one of his days off so we could talk about the different things the Cincinnati team had tried on Levi. He was so curious to learn about what worked and what didn’t for future patients. He said in exchange for me taking the time to walk him through the photos and videos he would type out a solid Complex Care Plan. A CCP would travel with us and anytime Levi unexpectedly ends up in the hospital it would be a step-by-step plan for his providers to follow as far as oxygen. It would prevent us from having to fight against intubation.

So Friday was the day of that appointment. Jake and I woke up bright and early at 6:45 and packed up the boys and headed to Chattanooga, a 1 hour drive from our home. As we drove I explained to Jake that this appointment shouldn’t take long and we could make a date of it! There were some “Escape” rooms close by that were willing to let Jake and I take the boys in as an anniversary date.

We got there early, as we usually try to do to make sure we are being respectful. We checked in and we waited. And waited. And waited. After an hour of sitting in the waiting room I stopped by the front desk to make sure we hadn’t been forgotten. She said that the doctor was running behind, which sounded odd since this was supposed to be his day off. When we scheduled it a few weeks ago they chose this day because he was off and “wanted to be able to devote a solid hour to talking with us. ”

After 30 more minutes of waiting the receptionist offered to have one of the other providers see us, since the one we were scheduled with was so far behind. I explained to her that the only reason we were here was at the request of that doctor and he had asked us to come in. This is when I started to get beyond frustrated. We were taken back to a room where the nurse explained that there were still two other patients ahead of us to see the doc.

I went back out to the front desk to ask if we did see the other provider if he would be able to give us the Complex Care Plan that the original doctor had typed out for Levi emergencies. While I was talking to the receptionist I noticed the doctor that we were so patiently waiting on was sitting in the back room behind the desk. Not seeing the two patients ahead of us. Just sitting.

I took a deep breath and tried to make up excuses for him in my head as the receptionist went back there to ask him about the Complex Care Plan. My imaginary excuses were WAY better than his real ones as he came to the front desk to apologize for running behind. He explained that he was a little mentally slow as he had just gotten back from his vacation in Europe and was jet lagged. He said that it would be fine for us to meet with his co-worker, to which I replied that the ONLY REASON WE WERE THERE was because he asked us to come in and meet with HIM on his day off when he would have time to talk to us?! He said that he decided since he was scheduled for us that he would go ahead and fill his schedule with other patients for the day.

Then the kicker comment came: “Well I have an appointment at noon anyway that I have to be at so I won’t be able to meet with you today.”

It was 11:45. We had been there since 9:30. I asked if we could at least get his complex care plan, to which he replied he had not done one.

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I don’t quite know how to explain my emotions; Levi’s face in the above picture is a pretty good summary. It wasn’t so much anger, but just a feeling of being so disrespected and not being able to do anything about it. As a special needs family, we have to get up hours before a typical family for an appointment like this. We have to pack oxygen tanks, feeding pumps, food bags, emergency kits, wheelchairs, bottles, medicines, and so much more in preparation for a day like this. I literally have to make checklists of things to make sure to pack for every possible scenario and the prep for an appointment day takes hours.

I asked the receptionist if we could be seen by the other provider and he came in within a few minutes. We started allll over with this man, explaining Levi’s Cincinnati history with him and trying to come up with a plan for him. This doc said he was willing to type up a Complex Care Plan for Levi and would be happy to take over his care as we explained we are DONE with the other guy.

Side note- the original doc was also the one who said he would contact Cincinnati for us while we were in the Chattanooga NICU…and he never did. Doc #2 is the one who actually followed through for us and helped facilitate the transfer to Cincinnati. We have a lot of respect for him and are happy that he is willing to take Levi’s case from Doc #1.

Okay, so why the long ranting and raving story? Frankly I just wanted to vent. To tell you the truth, there is usually always a story like this in each blog entry- but I usually end up deleting them as I see they did not serve a purpose. But I also know there are several medical friends that follow the blog and I want you to see a perspective from a special needs family in a situation like this. Unfortunately, appointment days like this are far too common. We have been forgotten in waiting rooms before, spent 4+ hours waiting to see doctors, and just been treated with so much disrespect. Yes, emergencies happen, and we have been the cause of others missing their scheduled doctor times due to our boy’s emergencies. But please understand how much time and effort goes into being on time to these appointments and if you only knew the sacrifices we have to make just to get there. A little empathy goes a long way in SN land.

By the time we left neither Jake or I felt like heading to our “Escape” room adventure so we changed plans and went out for an anniversary lunch instead. We don’t buy each other gifts, and in place try to make a memory. We hadn’t been to a “Fancy Restaurant” in years and thought we might be able to pull it off at lunchtime with the boys.

We went to an old favorite, J. Alexanders and as soon as we walked in (picture a wrecking ball of medical gear walking into a china shop) I felt out of place and embarrassed. I look at my drool stained top from snuggling Malachi, trying to keep him happy as we waited. And I just felt so unworthy of being in such a nice setting. Our lives are practical. Our lives are comfortable, in a chicken casserole southern way. Our lives are survival and combat gear. Our lives are unpredictable seizures. And our lives are filled with poop. Lots and lots of poop.

They led us to a table, and as they always do, everyone stared as we walked. I could feel my face turning red and I had to take a deep breath and remind myself that YES…we did in fact belong here. Jake and I are celebrating 10 years of a beautiful marriage. Our lives may not be comfortable and neat like the people eating at the tables around us, but we deserve to celebrate!

And it was delicious.

Our anniversary was actually on Thursday, but since we had a packed schedule we chose to celebrate on Friday when we would be in Chattanooga anyway. But we also felt like we couldn’t just ignore the day completely on Thursday so we went to a local arcade and spent an hour and $20 competing, Jake and Leah style. If you know us you are probably smiling right now. We are a very competitive couple and always have been. But it is all in good fun and we really had a blast. I think we are going to make that a new tradition for anniversaries. Can you imagine us as 80 year olds ski-balling it up?! We also went to a local restaurant Thursday night after the arcade and ate desserts for dinner.

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And for all you Rumpke the bear followers out there, he has not been back! He must have caught wind of our plan. We still assume he is coming every night and have the shotgun out and ready to go in case he returns. He hasn’t been by our house but has been over at the neighbors based on some prints he is leaving- some even on the side of their actual house next to the windows. YIKES!

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One of the things that I love the most about summer time is the amount of time Jake and I get to spend together. We have yet to run out of things to talk about, but one of the things I cherish the most is our conversations about God. I am so blessed to be married to someone that loves the Lord as much as I do. We talk about really deep things, and then sometimes we talk about useless things like what country Guinea Pigs are originally from (let me save you the time on Google and tell you that they were originally a food source in Peru and Bolivia…nasty huh).

But one of the more common things we talk about is the charge we have been given in raising these two boys.

This week I was reminded of a simple verse in John 3 and I read it with new eyes:

“He must become greater; I must become less.”

In it’s original context, this was spoken by John the Baptist in reference to Jesus. But I want to rewind a bit and take you back to before John the Baptist was even born.

In Luke 1 we read about Zecheriah and Elizabeth, two people that earned the adjective “righteous”. It also mentions that Elizabeth was unable to have children. One day while Zecheriah was in the temple he was visited by an angel. The Bible says:

13 But the angel said to him: “Do not be afraid,Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son, and you are to call him John. 14 He will be a joy and delight to you, and many will rejoice because of his birth, 15 for he will be great in the sight of the Lord. He is never to take wine or other fermented drink,and he will be filled with the Holy Spirit even before he is born. 16 He will bring back many of the people of Israel to the Lord their God. 17 And he will go on before the Lord, in the spirit and power of Elijah, to turn the hearts of the parents to their children and the disobedient to the wisdom of the righteous—to make ready a people prepared for the Lord.”

I remember reading these scriptures when I was pregnant with Levi and praying these over him. I prayed that he would be a joy and a delight to us and that people woudl rejoice because of his birth. I prayed that he would be great in the sight of the Lord. I prayed that God would choose to fill him with the Holy Spirit even before he was born. I prayed that he would bring people to God with the spirit and power of Elijah. And that he would prepare people’s hearts for the Lord.

So fast forward to that scripture this week: “He must become greater; I must become less.” I thought about the fact that, like John the Baptist, God has prepared each of us for specific tasks. Some of us find those tasks early in life. Some later. In John’s case, he knew that he had reached his task of preparing the way for the Lord, and stated “He must become greater; I must become less.”

I look back at our relationship and see all the ways that God prepared us for the task of raising Malachi and Levi. And as we dive into this new life as parents I find myself saying “He must become greater; WE must become less.” God’s presence in our family must grow greater, and our selfish tendencies must become less. As I thought more about these words from John I couldn’t help but see the beauty and contentment in them. He understood that he had been created for that moment…that task. And it brought him joy to do it.

I pray that God’s presence in our family only continues to grow greater, larger, and more enveloping. I pray that Jake and I are able to remove the selfish moments from our lives when we forget that this task we have been given is one that is so rich with beauty. What a gift we have been given to have two daily reminders that refocuses us and our priorities in life.

Please pray for safety this week as I take Malachi back to Vanderbilt to see the orthopedic surgeon. There have been so many negative changes in Malachi’s spine, feet, hips, and legs and I am afraid we are going to have some pretty intense conversations about the next steps. Next week we will be taking Levi back to Cincinnati so we will be covering lots of highway over the next two weeks. We also have a host of other appointments sprinkled in throughout the week to try to get through. Pray for health and strength for all four of us so we can be at our best.

Much love,

Leah