Under Attack

Good golly Miss Molly. I am absolutely convinced that the devil has amped up his attacks against our family. I don’t know if you have ever sensed that in your lives, but the feeling hit me mid week and I just can’t shake it.

Before we flow into the negatives from the week, let’s focus on a positive! We celebrated Levi’s first birthday on Wednesday! I have some fun pictures to share with you.

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And then there is this video- it makes me smile so big. Levi gets very shy and hides under blankets. He wasn’t quite sure about us singing to him and got very uncomfortable, trying to hide under the blanket tucked behind him. Here is the video:

Okay, now on to our challenging week.

The boys continued to progress in the negative direction with their colds. By Monday I felt that both boys needed to get checked out to make sure their lungs were still clear from infection. Levi doesn’t have much of an airway so any and all drainage that blocked that tiny opening would trigger his gag reflex and he would vomit. I know it sounds like I am exaggerating, but Levi was literally throwing up over 25 times a day, with half of those being at night. This is a very scary situation for multiple reasons…

For you and I, our brain can tell our vocal cords to close and keep the vomit from going to our lungs. Levi’s vocal cords are paralyzed so he is unable to protect his airway. I had to stay within arms reach of him at all times and snatch him up and forward when he started to wretch to keep him from aspirating (taking it to his lungs). There were three nights this week that he was getting up consistently every 45 minutes to vomit due to postnasal drip. My nerves were absolutely shot from the pressure of keeping him from aspirating.

On Sunday night I wasn’t able to get him up in time and he swallowed a bit of vomit. His oxygen saturations dropped and his heart rate started to go up a little too high for my comfort thus prompting the trip to the pediatrician. Thankfully both boys lungs sounded clear enough to avoid even chest x-rays. Malachi is almost completely back to normal and Levi is symptom free but still struggling with phlegm. Today he has thrown up 12 times. With all that vomiting dehydration has been a serious concern all week.

We were making some positive steps in the right direction until last night. Levi went to bed and Jake and I both agreed we thought this would be his best night of sleep all week. Within the hour he turned into a maniac. Either he was bit by a rabid raccoon or something was causing some serious pain, so I got up with him around 12:30 to try to calm him down. And he NEVER went back to sleep…just screamed until he vomited over and over. Then he started running a fever. When sunrise rolled around I made the plan to take him in to an urgent care in the town close to us (30 minutes away) right when they opened and if it wasn’t something simple then I would make the trip to the ER (an hour away).

We were were turned down by 3 urgent care places before I finally found one that would simply check his ears and listen to his lungs. I didn’t feel like whatever was going on was too bad yet as the fevers were low grade and I was feeling confident it was an ear infection….taking him straight to the ER would just expose him to something bigger when he was already weak. But the fourth place agreed to take a look and a listen and sure enough Levi has a nasty ear infection in one ear and he start of one in the other. He is back on antibiotics…we just finished the last round last week so going back on is discouraging, especially leading into a surgery week.

As crazy as it sounds, we proceeded with our Nasvhille pre-op trip. I called beforehand and explained the situation and they said to bring Malachi anyway with the hope he would be good enough by this week to operate. Malachi, Levi, and I loaded up late Monday and made the drive to a hotel just outside of Nashville. I had researched lots of hotels and found one that would suit our needs but I have to tell you I was blown away by how perfect the room was for our situation. It was fully handicap accessible and had a living room area so I could safely get up with one boy while the other slept in the bedroom. There was a full kitchen with a dishwasher, sink, and a fridge, and a bathroom large enough for the stroller to fit in with ease.

I did my usual full room cleaning with clorox wipes before I put anything down. I don’t know that I express to you all how germ conscious we are. I routinely sanitize my debit card, cell phone daily, car keys, seat belt buttons….we are a little over the top but with weeks likes this I feel validated in being weird.

We arrived around 10:00 and I had both boys were asleep by 11:30. I had brought a stack of hand towels from home to catch Levi’s vomit and I cautiously dozed off to sleep. God was seriously looking out for me; for the first time all week, I got 5 straight hours of sleep. When Levi woke up and I saw the clock I almost started crying with thankfulness to God. The crew stayed up the rest of the morning and off to the hospital we went.

First stop was CT to get images of his hips and feet. Then we headed over to the orthopedic surgeon to discuss the images and the plan for surgery. He walked into the room and said “It is a good thing we got a CT scan today as we aren’t going to be able to do the surgery like we planned.” He started to show me the images and Malachi’s hip is severely out of socket. We knew it was out, but didn’t know how bad it was. The other hip is starting to do the same thing but isn’t bad yet.

In this picture you can see that his hip bone is rotated out and is nowhere near the socket like the other hip bone. Ouch.

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The surgeon proceeded to talk about how we needed to change the surgery from a tendon lengthening to a femoral osteotomy. This is where they cut off the head of the femur bone on both hips. This surgery is incredibly painful and Malachi would be in a full body cast from his nipples to his toes for 6 months, casted in a frog leg position. Kids who have this surgery done typically lose around 15 pounds and regress tremendously with all of their physical progress and abilities.

We have discussed this surgery before, but we all agreed to wait to do this until it was absolutely necessary. Kids with full dislocations like Malachi have a 50% chance of developing pain and that is when the surgery becomes a non-negotiable. We definitely don’t want him to be in pain on a daily basis, but also don’t want to put him through the pain of this surgery if he will be on the good end of the 50% statistic (which our family typically is not).

So when the surgeon said we needed to change routes for surgery and do the osteotomy I felt like I had been sucker punched. I caught myself saying “WOAH WOAH WOAH that is not what we talked about!”

We talked at length about the options and by the end of the conversation both the surgeon and myself agreed that Malachi couldn’t handle an operation of that magnitude right now. We will still be going in and surgically lengthening and tightening some ligaments in his feet but we will not be touching his hips this time. This changes our stay to an outpatient procedure, assuming all goes as planned.

Malachi will be casted below the knees for about two months. We will be going back and forth to Vanderbilt quite a bit for follow ups and to get him fitted for braces again. The casts should be officially removed on January 2.

Malachi and I will be making the trip solo as Levi just needs to stay tucked in and comfortable at home. We will be driving up Monday afternoon so we can be there first thing Tuesday morning. His surgery is scheduled to start right around lunchtime but pre-op nonsense will require us to be there pretty early.

After the appointment with the surgeon we headed to the appointment with the PATCH team (anesthesia). By this time Levi had thrown up mucus 8 times and my nerves were shot from discussing the potential of a massive operation. We went through all of the typical anesthesia questions and Malachi’s medical history. After a few minutes the man said “You seem to be handling all of this very well.” To which I simply replied “This is surgery number 35 for me…you aren’t going to say anything I haven’t heard many many times.”

Before we left he smirked and said “So based on that conversation I am going to guess that you have a medical background.” I replied: “Nope, just a mom trying to give her kids the best life they can have.”

We packed up and headed towards home which should have only taken 4 hours but with the pouring down rain and heavy traffic it took us almost 6 hours to get home. And to be honest it was truly a struggle for me. After the first hour my eyes were taking longer to come back open after each blink so I cranked up the A/C in the front half of the car and got some caffeine to fuel me! I am going to try to download some Podcasts for the upcoming trip to help keep me more focused.

The next day we headed to Levi’s eye appointment. To recap, our first appointment a few months ago did not go as I had hoped and the doctor said Levi would need surgery on his eyes. I cried and had an emotional breakdown haha, then scheduled an appointment with another eye doctor for a second opinion. The day before that appointment they called and said that the doctor had decided to go on maternity leave and we would need to reschedule with another one of their eye doctors. That appointment was this past Thursday.

This eye doctor confirmed what the other one had said. Levi’s eye muscles are having a hard time keeping up, and the culprit is his spots of brain damage. This is where it gets really discouraging…surgery is the only way to correct it and there is zero guarantee that it will hold. There is actually a high chance we will have to continue to do these surgeries over and over again as the real problem is his brain and not his eyes. The surgery sounds awful as they peel back the top layer of the eye to get to the muscles, then sew that layer back on. His eyes will be bloody looking for almost a month, and will take 3 months to return to normal. And again, all of this is not guaranteed to work.

The surgery needs to be done before the age of two to prevent depth perception issues. Without the surgery his eyesight will be significantly compromised. Ugh.

My mommy heart knows we have to do this stupid surgery to give Levi a chance at normal later on in life, but each time my kids have to suffer my heart breaks more and more. I am still pretending to be in denial and have asked to speak to another doctor to get a third opinion before we schedule surgery. We will be meeting with her in January.

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On Friday I loaded up the boys again and we made the drive to the children’s hospital for Levi’s first synagis shot. Synagis is a medication that will lessen the severity of RSV should be contract it this winter. He has to get one of these shots every month, but we are so grateful for them! It is difficult to get insurance to approve them so it is almost like a victory in itself that they didn’t fight us on this one. I wish I could be a fly on the wall of the insurance company as they discuss our family haha!

Levi obviously cried his eyes out after the shot; we are told the medication stings as it goes in much worse than any immunization.

Malachi has been in an ornery mood this week. I brought him in from the car and set him in his seat and he had a sly smile on his face. I have seen that smile before and knows it means he is up to no good so I told him “Malachi, DO NOT fling out of that seat!” He smiled again, and I said “Malachi, I am serious!” I went out to get Levi from the car and when I came back in I heard a thump. I ran over to find Malachi had dove head first out of his seat and was essentially doing a headstand with his but still partially in his seat. On the way down he had grabbed his tummy tube and pulled the cap off so he was upsidedown and COVERED in his stomach contents.

Y’all this is where I need some prayer. I am embarrassed to admit this, but I am absolutely disgusted by Malachi’s stomach tube. Now Levi has one too, but Malachi’s is just so different. Malachi’s surgery site is still leaky and gets stinky throughout the day. And his tube is always dangling out from under his shirt and since it is clear you can see his tummy juices in it. I have dealt with so many scars and wounds in the last five years, but this one is proving to be a challenge. I have dry heaved too many times to count this week!

But the biggest issue is that I find myself mourning over Malachi’s normal with this tube. I always want people to be comfortable talking to Malachi and being around him. But with this tube I watch people react as it is the first thing they see. I hate that we did something to Malachi that makes people cringe and look away. He will get this tube switched out in a few weeks, but I can’t stop being sad for him.

In addition to the visual yuckiness, Malachi cries every time we try to run anything through it. You can tell it is a very uncomfortable feeling for him so we are still feeding him by mouth like normal. Maybe time will help with that.

Alright let’s do this…let’s talk about Levi’s birthday…

There are times when I feel like a narcissist talking about myself so much. This is one of those entries. But this is an outlet for me to process my thoughts!

Leading up to Levi’s birth, Jake and I were so excited that God had blessed us with another baby boy. We talked about how much easier this round would be with a typical kid. I laughed about how odd it would feel to only have to go to the pediatrician for wellness checks, and not have specialists and therapies to worry about. It was going to be our chance for some normal.

I was high risk with Levi after the placental abruption I had with Malachi at just 24 weeks. I went to the doctor for monitoring, stress tests, and ultrasounds every Monday, Wednesday, and Friday. Everything on all of those tests and scans looked wonderful. He was measuring small, indicating my placenta was acting up again but he was healthy. Our goal was to make it to 36 weeks!

I dropped Malachi off at school that morning and headed to town to get some food for him. I met my mother for lunch and then it happened…I abrupted again. I drove myself over to the hospital, calling Jake and the doctor on the way, and tried to keep myself from having an emotional breakdown. It was a God thing that Malachi was not with me that day.

There were several concerns that we were focused on. The first was that I had taken blood thinners that morning. Operating while those are in your system is incredibly dangerous. The plan was for me to stop them a week prior to delivery but with this surprise that wasn’t possible. My clotting factors were coming back at dangerous levels.

The second big concern is that I had eaten within the hour. Anytime you do surgery on a full stomach the risk for vomiting and aspiration is high. We tried to delay as long as everyone was comfortable but as the minutes ticked by the doctors grew more and more nervous. We decided to go ahead and head to the Operating Room and put me under general anesthesia.

As we wheeled down the hall I fought hard against flashbacks from the night Malachi was born. This time around we weren’t running, but as those ceiling tiles flashed by over my head I got chills thinking back to that night. I remember when Malachi was born thinking that I needed to pray as we raced down the hall, and the words from Job were the ones that came to mind: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”

But this time around as I started those words they just didn’t feel right. I waited for the Holy Spirit to give me the words and I started to pray “The Lord bless you and keep you; the Lord make His face shine on you and be gracious to you; the Lord turn His face toward you and give you peace.” I wanted Levi to be enveloped in God’s peace.

This verse is the one we chose to bury under each of the boys rooms when we laid the foundation of our home. I have always felt that God has allowed His face to shine on Malachi, and I couldn’t think of a more perfect prayer for Levi.

Levi was born just before 6:00 that afternoon. And when 8:00 rolled around and even Jake had yet to lay eyes on him we all grew a little nervous.

We had prepped our hearts for a NICU stay prior to that day; we knew he would be small. He was 4 pounds 8 ounces at birth. The doctor came in to tell me that he needed a little help breathing, which didn’t alarm me as most preemies do. I was a little upset that he had to be put on the ventilator but not shocked. Jake went to meet him and brought me pictures. This was the first picture of Levi that I laid eyes on and I was overwhelmed with love.

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I was terrified of Malachi when he was born- his skin was underdeveloped and translucent. They had prepped me that Malachi might not live through the night. I was so overwhelmingly scared that day.

But this time I felt joy. I felt excitement. He was so sweet.

They explained they would need to take him to the level 4 NICU that Malachi had spent 4 long months in, and as much as it broke my heart I had to watch them wheel Levi away shortly after meeting him.

I got to spend 6 sweet minutes with him before he left; here is a video of the first time I laid hands on him:

Malachi was fascinated by the whole ordeal, but didn’t seem to understand about the baby as he couldn’t hear him. But even with his poor eyesight, he searched for this baby brother everyone was telling him about.

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I spent that night alone in a hospital room, listening to all the new moms around me gushing over their babies. My heart hurt so badly that night. I just wanted this time around to have a tinge of normal, but as the hours went on and my baby was 45 minutes away I felt like that opportunity was slipping away.

A week prior to having Levi I went and visited a friend that had just had a baby. We talked about breastfeeding and all the normal things new moms get to do. As we talked I felt this tenseness in my heart, knowing that I was possibly setting myself up for major disappointment. I tried not to long for normal, but so many times my heart and mind wandered towards that desire.

As the days and weeks went by we learned that this journey with Levi was meant to be anything but normal.

I think back to the unfolding of Levi’s diagnosis and the emotions that came with it. I went back to one particular blog that I wrote and thought I would share those words again with you:

There is an old phrase “Lightning never strikes the same place twice”. While I would like to find comfort in that old myth unfortunately life is showing us that the statement is not an accurate one.

As I looked at articles talking about lightning strikes, one of them said that if you want to see lightning strike the same place twice go look at a nearby tall tower during a storm. Lightning is drawn to tall things and will often strike the towers repeatedly. As I read that statement I couldn’t help but see such spiritual significance.

When lightning struck our family in 2013 with Malachi it strengthened our faith more than I ever thought possible. Malachi’s life has taught us the meaning of reliance on God, as our human hands can only do so much. It was AND IS a struggle, but through it all we have tried to stand tall. So it is surprising that lightning has found us again? Should I be mourning the fact that the devil sees the Carroll family as a threat?

Jake and I have been talking over the last few weeks about the term “righteousness”. So many sets of parents in the Bible have been given that adjective, and we talked about how we hoped that God would be able to use that word for us when we meet Him. Now hear me when I say that righteousness isn’t something that we work to “earn”, but it is a heart condition you develop when you live a life of dependence on God and follow His leading.

As I drove down the road this morning I started thinking about the verse “O death where is your sting?” Think about that phrase. Does your life reflect the truth in this verse? Are we living in such a way that death would not sting, because the impact we had on this earth was so great? As I looked up that verse I continued reading the chapter and got mesmerized by this one:

1 Corinthians 15:58 “Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.”

This is one of those weeks that I am feeling the effects of trying to be that tall tower. I feel the effects of those lightning strikes as the memory of them shakes my soul. I find myself cringing, bracing for the next moment of impact as the devil continues to pursue the loyalties of my family.

Just like he went after Christ in the wilderness, the devil pursues us in our moments of weakness. I am not at all surprised that this week has been such a challenging one seeing as it is leading up to a big surgery and also the anniversary of a scary night. All day long I have been reciting those words in my head “Let nothing move you”.

When the devil tempted Jesus in the desert Christ combated it with scripture. This week I am praying that the Holy Spirit continues to place the words of God on my mind that I need to get through each difficult moment that this week may bring.

Please pray for my strength in doing this. Admittedly, I am very worn down this week. We have been in a cycle of pain and sickness for a month now and it is hard on my mommy heart to see them suffer. This week will be no exception as I have to hand off Malachi again.

Please also pray for safety in traveling and that God props open my eyeballs as I make the drive there and back on very little sleep.

Pray against all infections post op for Malachi and that we are able to control his pain levels well. Also pray that this round of antibiotics puts Levi back on the mend quickly, and that he is able to stop vomiting so frequently.

Thank you for being so dedicated to checking in on my family. It is humbling that you take time to read my ramblings each week and pray for my family.

One final note…God and his special and sneaky ways…

I have been having a difficult time lately with feeling very alone on this journey. Jake has always been one that I feel like “gets it” but this week the weight of their care has been squarely on my shoulders. On Saturday morning we got a package on the front porch that was hand addressed to me. I quizzically looked at the large box, confused as I didn’t recognize the return address or name.

When I opened the box I found a carefully thought out and uplifting box of goodies from a church in Ohio. Inside were kind messages and notes of encouragement, gift certificates for dinners out, lotions, and so much more. It sounds worldly to find so much comfort in a box of material things but the gesture meant more to me than they will ever realize.

There are so many of you that reach out to us in such special ways. Thank you all for taking time to uplift a tired momma’s heart and remind me that I am not alone in this journey- that I, in fact, have a host of prayer warriors that have volunteered to travel this hard road with us.

God bless,

Leah

 

Serving the Lord

I feel like I left you on a cliff hanger last week as Malachi was struggling settling back to normal. Monday was another rough day for him so I broke down and scheduled another visit to the doctor. With his random fevers we were very suspicious of pneumonia. I made the appointment for Monday afternoon when Jake would be able to leave during his planning and watch Levi…the last thing we want to do is expose him to germs unnecessarily.

Malachi’s CBC (complete blood count) came back very average and normal but the doctor did think that she could hear some crackling in his left lung so we packed up and headed out to get a chest x-ray. The radiologist reported that one lung looked a little hazy but without the bad white blood cell count to verify an infection we didn’t proceed with any treatment. I felt better knowing that things weren’t in emergency mode, so I am glad we went.

Tuesday morning I packed up the crew bright and early and headed to the hospital for Malachi’s follow up appointment with the surgeon. I told Malachi on the way there that he was going to have to let the doctor mess with his tummy a bit and he kept signing “no”. So I did what every good mom does…I bribed him with a trip to the zoo. We had another appointment at 2:30 across town so we had some time to kill.

After he knew there would be an adventure after his tone quickly changed. After the hard few weeks he has been through I thought I needed to do something to lift his spirits and when November gives you a 70 degree day you might as well take advantage of it!

Malachi was so brave and stayed very still while the surgeon took out his stitches. All of the incisions have healed up well and while I hate the tube with a passion, I am glad we are over the healing hurdle of that first week. He is still very sensitive and cries a whole lot more than normal but it gets better each day.

The appointment went relatively quickly. The hardest part has been waiting room conversations lately as it is testing my ability to offer grace (not proud of that struggle). There are a lot of people in our world that don’t know the polite way to ask about the boys. I get nice comments like  “Your boys are beautiful!” and then I get these:

“So do they both have the same thing?”

“Does he bite (referring to Malachi)?” Hmmmm.

Anyway…

Off to the zoo we went, and as we checked in with the front desk they handed me a schedule of the day’s events. It was 11:20 and there happened to be a snake meet and greet at 11:30. Malachi has been OBSESSED with snakes (and dinosaurs) lately. He has several toy ones that he likes to hold and play with so when I saw that schedule I knew we had to go!

Thankfully we were the only ones at the meet and greet so Malachi got 15 uninterrupted minutes with a 12 foot python. I showed him where the snake was and when his hand touched his back that sweet Malachi smile lit up his face with such joy. I moved my hand away and told Malachi that he could still pet him if he wanted and he independently reached out and pet the snake for several minutes.

It was so wonderful to see that smile again.

We left the snake exhibit and as we walked by the giant lizard it ran over to the glass and began banging his head on the window at Malachi, who started giggling uncontrollably at the “dinosaur lizard”.

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Malachi is still legally blind, but in some low lights he can catch movement and shadows with his eyes. The day was very overcast and it made my heart happy to see him searching for the animals with his eyes. And thank you dinosaur lizard for getting close enough for Malachi to enjoy your company. Even though you were a little freaky.

We went from there to the monkeys, who also ran over to the glass to see the boys. I don’t quite know what the draw is but if you ever want to get up close with the animals just join us for a day at the zoo- they always come running!

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Levi was not amused in the slightest. And desperately needed a nap. 9FA33E8E-BFF8-47B4-8738-A1232163EB13

And it wouldn’t be a zoo trip without a stop by Malachi’s favorite big cats, the jaguars. That is where I took this video, which has had me laughing all week long. This was the perfect summary for our day at the zoo:

The trip worked wonders for our sweet Malachi and he was close to being back to himself by the time we left. I think he just needed some adventure to focus on.

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We tackled physical therapy and feeding therapy for both boys, and even horse therapy this week. With Malachi’s hip and foot surgery coming up next week I wanted him to have one final session with his horse Chica! When I asked him if he wanted to ride his horse he signed “YES” very adamantly and we watched his cues closely for what he could handle.

The week started to pick up momentum towards being a good one. Then Friday rolled around and we had the first sneeze…the warning sign for something brewing. I cringed and waited and sure enough Levi came down with a nasty cold. The rest of us were fine but as you know, it is hard to isolate one kid while being a caretaker to another. By Saturday morning Levi was much much worse and Malachi started with his.

Our weekend has been a re-run of last weekend’s “Should I stay or should I go” game as we make pros/cons list for a dreaded trip to the emergency room. Malachi is handling this sickness decently but Levi is down for the count. He has been running some high fevers, but is still SATing well with his oxygen. I cranked him up to 1 liter and he is still in a safe place but sounds pretty rough. They both have a cough that would send you running. Levi is also throwing up about 12 times a day.

And I am thankful for tile floors and a washing machine.

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I am confident that if I take Levi in like this we will be admitted and possibly put back on the ventilator for his work of breathing. But his baseline work of breathing is what we go by and honestly it isn’t that much worse. I promise you all, if we even get slightly freaked out I will make the trip. Just trying to hold off until tomorrow when I could possibly get him in for a CBC and an x-ray like big brother.

The doctors in Cincinnati have told us numerous times that when Levi gets a bad respiratory infection to expect an ICU stay and for him to be put on the vent. We are just praying his body continues to fight this nonsense!

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So let’s talk about the next two weeks. And let’s pretend that everyone is normal and healthy as we go into it.

Tuesday night I have booked a hotel room just outside of Nashville in preparation for our big appointment day Wednesday at Vanderbilt. It will be just the boys and I, and I just felt that with my lack of sleep, a 4:30am drive to Vandy (three hours one way) followed by a long day of appointments then the return drive home was not a good idea. Yes, a hotel stay with these two is a brutal thing but it seems to be the only safe option.

We are trying to save Jake’s vacation days for emergencies as we tend to have a whole lot of those in our life.

If one or both of the boys are still sick we will be re-configuring the plan but we truthfully really need this to work. Please pray with me that their bodies are completely healed by Wednesday morning for Malachi’s pre-op appointments. No pneumonia brewing…just immune systems doing their jobs well!

Malachi will meet with the orthopedic surgeon, the anesthesiologist, and get a CT scan done. The appointments begin at 8 and last until around 3. I will go back alone with Malachi the following Tuesday (November 20) for his surgery.

In addition to this full, busy day on Wednesday, Levi sees the eye doctor on Thursday and gets his first synagis shot on Friday. Synagis is a medication that helps lessen the effects of RSV should he contract it. It is extremely expensive and reserved for only immune supressed kids or children with lung issues. We are very thankful that he qualifies for the injections and will get them once a month through RSV season. Insurance is completely covering the bill, which is a miracle in itself!

Each of these appointments are about an hour away so we will be logging some road miles this week. I have went ahead and canceled all of the therapies we have scheduled for Monday and Tuesday so we can just focus on getting better.

We are all very exhausted. We were coming off a rough week anyway with surgery, and then got hit with two sick medically fragile kids. I won’t be able to spend too much time with the devotional thought this evening, but definitely feel like God has laid some things on my heart to share with you.

Way back in July I purchased tickets to take some of the girls in my youth group and their mothers to see Sadie Robertson in Chattanooga. If you don’t know who she is, she is the daughter of one of the men from Duck Dynasty (think long ZZ Top beards). I was running on zero sleep and truthfully dreading going but needed to drive the bus and get my crew of 22 there. Jake geared up for war on the home front and I reluctantly left.

Sadie is a wonderful, God anointed speaker and I highly encourage you to look her up and hear some of the things she has to say. The message was geared perfectly for my teenage girls and being in the presence of God felt refreshing. As I looked over the rows of my youth group, my fellow sisters in Christ, I realized something….

I don’t pray for others nearly as often as I should. Most of my prayers center around my world, my kids, my needs. I don’t often take time to pray for others. But the Bible tells us the Holy Spirit prays on our behalf and I am confident that prayers over the things that burden me are making it to the ears of God without me even speaking them. So why do I not take the snippets of time I do get to focus on formulating a prayer to lift up someone else?

I spent most of the evening praying over these teenage girls that God has placed in my life. As I looked at each one of them I thought to myself about their futures and the trials that each of them might have.

The devil shows no discrimination. Your wealth, your status, your list of good deeds…nothing exempts you from attacks from the devil. Nothing takes you off of his radar. In fact, when you are a child of God it puts a bulls eye on your back as he is jealous of the love you have for God.

But in the same way that the devil shows no discrimination, neither does God’s love. There is nothing you can do that makes you undeserving or unworthy. Nothing takes you off His radar. He seeks after the flawed, the imperfect, the burdened, the ones with a past. He seeks after you with a love and a compassion that nothing else in this world can offer.

Lately I have been so focused on the compassion of Christ. Oh how I wish I had eyes to see the world as He did. I wish my eyes could be drawn to the situations that need a burst of compassion, and give me the ability to meet those needs.

God had a word for me this week too. I had to look it up after He laid it on my heart…

Colossians 3:23-24  Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

I thought about this verse and tried to pinpoint which areas/roles of my life are done as if I am serving Christ himself. There are many times when I care for the boys that I am filled with an overwhelming love, knowing that I am serving them as Christ would. But there are just as many times I complain and trudge through my day.

As I sat at the event on Saturday I started to process what a day would be like if I treated everyone as if they were as valuable and as worthy as Christ himself. What a impact that type of living would have on our world. And what an imprint a life like that would leave on hearts.

I have personally challenged myself this week as I go through an emotionally challenging one to serve others as though I am serving Christ…at the pharmacy, at the drive through window, with my youth group, with my husband, with the doctors I will encounter. It will not be an easy challenge.

But if we want to be a light to our world we have to be willing to tackle big challenges.

Please lift up the Carroll crew in your prayers this week. In addition to some wild schedules, it is also Levi’s birthday week (on Wednesday). I am purposefully not spending much time on that one in this blog because I don’t think I can handle the emotions that reminiscing will bring tonight. But next week…oh goodness.

Thank you for checking in on my sweet boys and thank you for praying for a complete and total healing on their bodies. That Levi’s vocal cords would awaken and Malachi’s brain would be restored!

Much love,

Leah

 

We Chose This

Oh my what an exhausting week we have had. Be prepared for lots of information and a ridiculous amount of pictures. When we get locked in the house post op I find lots of opportunities for photos!

Here is a snapshot of the number of syringes we are going through in ONE day between both of the boys medications right now:

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Surgery Day: I checked Malachi in for his surgery at lunchtime on Monday. I told Jake that my goal was to make it the whole hospitalization without shedding tears, and I came soooo close.

The time came for the dreaded hand off- the moment where I hand my sweet baby to a stranger, knowing they are about to take him to a room of pain. God blessed us with a special treat- one of Malachi’s NICU nurses is now working in the operating room and was able to take him back and be with him for most of the surgery. She messaged me later and told me he was a ham back there making all the nurses laugh.

I went back alone to my holding cell. If you have been with us for awhile, you will understand my joy about having a room with a door! And I waited. The phone rang several times with updates, but the second time was the disappointing news that they attempted the laparoscopic route and it did not work. That meant they had to start over and do the surgery through an open incision. The surgeon came in after the procedure and seemed as disappointed as I was that he wasn’t able to do the less invasive route. I said “Well, I am not surprised as we seem to be a worst case scenario type family.” And the surgeon replied “That’s exactly what I told my resident…if something can go wrong, it will with this kid.” Even the surgeons acknowledge our knack for complications.

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After a relatively easy recovery room experience thanks to pain meds we settled into a room. They took off the dressings to take a look at the surgery sites and my stomach dropped. Not only were there two small incisions from the laparoscopic attempt, but there was another 4 inch incision right in the middle on his stomach. And then there was the g-tube….Levi has what they call a mickey button. It is a small button that sits on his stomach that is about the size of a penny. You hook extension tubes to it to put his food in and when it is not in use you can unhook the extensions, close the lid, and no one would even know it was there! Very low profile and relatively flush on his skin so you can’t see it through his clothing.

They were unable to put that style of tube in Malachi and instead put in a HUGE mechanism. The button is 3 inches in diameter with a tube sticking out of the middle of it that stays on there 100% of the time that goes down to his mid thigh. My heart started to break for Malachi as we always try so hard to preserve his normal. We genuinely hated doing this surgery but knew it needed to happen. But this device was never what we had in mind. This gives people something to say “Ewww” over as they see a clear tube hanging out oh his stomach with stomach juices inside of it.

Yep- I cried over that stupid tube.

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I would show you pictures, but it is not a pretty surgery site right now and it had to be sewn onto his stomach. Thankfully we are told we can switch this tube out for a mickey one in 6 weeks.

I can handle a whole lot more than I ever realized but something that has yet to get easier for me to handle is wounds. Wound care is my weakness, and I can’t tell you how many times I have dry heaved in the last week trying to keep everything clean and healthy looking. Stomach juices are a close second, which doesn’t bode well for a g-tube (x2) momma.

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We had really hoped that this recovery would be an easy and simple one but unfortunately it is not going well at all. Malachi is in a lot of pain. We were discharged on Tuesday afternoon and kept him heavily medicated for several days. On Thursday we noticed his breathing changed a bit and wondered if the pain medications were slowing his rate. To check our theory we weaned him to basic Tylenol and Motrin which did help his breathing rate but then Malachi started running moderate fevers. The pattern has been the same since Thursday: Malachi starts running a fever, we medicate him and it breaks after a few hours, 24 hours later it returns.

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We have been communicating with the surgeon as well as the pediatrician and unfortunately since it is the weekend there isn’t much we can do other than take him to the emergency room. I asked the pediatrician if they would call in orders for a chest x-ray to check for pneumonia and a CBC to check for infection but they said they were not comfortable doing that without laying eyes on him, which they can’t do until normal operating hours tomorrow.

This is where the parent struggle comes in. His immune system is so compromised. Yes, we could take him to the ER but I can almost guarantee that Malachi will contract something worse in there, and likely bring it home to Levi. We are told that when Levi gets any airway sickness to expect an ICU stay on the ventilator. Taking him to the ER would endanger both boys so we are trying our hardest to get through the weekend without going that route.

Obviously Malachi’s safety and health comes first so we have been checking his oxygen saturations on Levi’s pulse oximeter, breathing rates, temperatures, and charting it all. We still think he is in a safe range, but definitely want to get him in tomorrow to check things out. Post op fevers are pretty common, but we feel like he has something respiratory going on- it could be an upper respiratory infection he picked up in the hospital but it could also be post op pneumonia (he gets intubated during surgeries) which needs to be treated. Please pray with us that we can avoid a late night ER trip tonight and that we can get answers and treatment in the morning. And pray for Malachi’s comfort- he has just been so miserable this week.

I was able to get a few smiles out of him this weekend during our fever free times.

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During our hospital stay we were able to see a lot of friends- I actually started laughing this week as I reminisced over all the people that stopped by while we were there…former nurses, college friends that became nurses, a local friend with her own warrior in the ICU…

One of our surprise visitors was Malachi’s neurologist. He saw that we were inpatient and came to give us the good news that they had officially been cleared to start prescribing Epidiolex, the first FDA approved cannabis-based drug. It has been doing wonders for children with intractable (uncontrolled) epilepsy like Malachi, so this was amazing news. Malachi will be one of the first patients to try the drug at our hospital! I have been dealing with the paperwork and phone calls and it looks like we will be able to start it next week. We have tried CBD oil in the past and it has definitely made a difference in his tone, seizures, and sleep habits.

We were able to deliver our “Blessing Box” to the NICU on Monday before surgery! In the end we collected enough donations to donate 144 cards, each handwritten and filled with a $20 Target gift card and a $5 Starbucks gift card. There are instructions on the top of the box to give a card to a long term NICU mom that really needs some encouragement.

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I know I have mentioned this before, but God told me that each one needed to be handwritten. I was able to write nearly 50 of them but it took me 1 hour to write 8 cards….at that rate I knew I would not be able to finish before New Years. Thankfully several friends willingly took stacks of the cards and wrote the message for me. It was a good reminder for me in allowing others to help carry our burdens and help where they are able.

I prayed over each card the night before I delivered them to the NICU- it was a good distraction from the day looming ahead of us. I prayed that God’s purposes would be fulfilled with each card, knowing that this project was His doing and not mine. There is something so exciting about obeying God, even when you don’t quite see the whole picture.

There are reasons for everything God asks us to do. I don’t know why these needed to be handwritten, and I may not ever know but remember that the details matter to God. Sometimes His plan is bigger than the sacrifice of time He requests from us. And what we see as menial tasks are just catalysts for something big He is about to do.

And just like the Bible story of the 5 loaves and 2 fish, never underestimate God’s ability to multiply. I am the boy in that story, with a tiny gift that was offered. Jesus takes our tiny gifts and creates miracles in the lives of others. What tiny gift are you able to bring to God to become his instruments?

When things are done through a heart like His, a heart of true compassion, He will supply your every need.

On Wednesday I had a friend request on my Facebook account and saw that the woman in the profile picture was holding a preemie. I clicked on her profile and she had posted this:

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I was amazed that somehow she had found me, as I had not given enough details for her to be able to track me down. To keep them personal, I simply put that I was mom of Malachi (a 24 weeker; 112 day NICU stay) and Levi (34 weeker; 131 day NICU stay). But a mutual friend had seen her post and knew about the project we were doing so she tagged me in it. It blessed my heart to see that God was already using these cards to lift up spirits and point these discouraged mothers towards Christ.

It is so much fun to watch God work.

Let’s talk about Levi. I don’t know if his antibiotic has fueled his wild side but he has been a bundle of energy.

This is his new favorite game in his car seat. He rocks himself so hard that it gets stuck propped backwards. But don’t stress, he can get himself un-propped. Y’all, he is WILD.

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He also had his first tooth finally break through this week! Oddly enough he is getting his top front teeth first. Pretty much everything he gets a hold of goes into his mouth these days.

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Levi sure does love his daddy, but this week we hit a HUGE milestone and he started calling for MAMA! I left for the hospital with Malachi and sure enough Levi started calling out for me while I was gone. This is a very big deal for two big reasons: 1) I have never had a child call for me  2) This is the boy who we were told might not have a voice  I was able to get it on film to share with you all…

This week has been a very messy week as both boys have discovered their feeding tubes have lids that pop open. Looooots of laundry and lots of baths. The day we came home from the hospital I went into the kitchen to put dishes in the dishwasher and when I turned around Malachi had a mischievous grin, which was a surprise since he wasn’t feeling well. I walked over the find he had a death grip on that stupid extension tube and had popped the lid off- he was now sitting in the 8 ounces of food we had just put into his belly. YUCKKKKK.

And lovely little Levi has done that very same thing tonight 3 different times in the last two hours. Messy, messy boys.

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On Friday I was giving Levi a much needed bath and had him stripped down on the bath mat. He looked very seriously at me and whispered “Mama” slow and creepy like and as I quizzically looked back at him I felt the warm sensation of his pee stream hitting my leg. Lovely. He was highly amused and I couldn’t help but laugh.

Alright, so let me be real and raw for a few minutes. It is weeks like these that I realize how fragile I am. In my head I am tough as nails, but my heart knows that is just something I tell myself to keep it from breaking. The inside of me is a very weak mother who carries scars from seeing her boys struggle over and over again.

On Thursday I had to consciously avoid looking at the chair I sat in when the pulmonologist told me Levi’s vocal cords were paralyzed and he would need a trach.

That parking space where I sat in the car and sobbed uncontrollably one night when we almost lost Malachi.

I avoided eye contact with the sleep study tech as we passed each other in the hallway, but seeing her brought a wave of nauseousness as I remembered all the discomfort Levi was in that night and how we were about to have to do another one in December.

I had to walk on the left side of the hallway, remembering the hundreds of times Jake and I walked to the right in that hallway during Malachi’s nearly 4 month NICU stay.

I tensed as they looked up what room we would be sent to, knowing that the ICU is on the 4th floor- we know that floor so well. But also knowing we have spent weeks on the 3rd floor as well, and praying that we wouldn’t get one of those rooms where the memories would be able to creep in.

When I went into the bathroom while Malachi was in surgery I caught a glimpse of myself in the mirror and flashed back to a tear stained Leah face that I had seen in that same mirror dozens of times before.

There are triggers everywhere. They are literally unavoidable in that place. And while I used to be able to mentally push past them I am losing that ability. This was surgery #34. Stress is starting to impact me physically with full body stress rashes, hives, vomiting, and the inability to eat. I feel like I have been at war.

Even being home from the hospital this week I have had a difficult time, getting nauseous each time Malachi’s fever comes back, knowing that I am possibly going to have to take him back to that place. These feelings have nothing to do with my discomfort, but rather the pain I feel for them.

In my weakness, mentally I have been allowing thoughts in that don’t belong. This week I was flipping through pictures on my phone and I paused and thought “What if this is the last picture I will ever take of Malachi?” In my heart I know these thoughts are not healthy, but I haven’t been able to succeed at pushing them out of my mind.

If you haven’t already picked up on this, I am a control freak. And not being able to control the outcome of anything medical for my children is very devastating for me.

When I start to feel like I am drowning in these thoughts the warning lights quickly activate and I know I need to stop them quickly. I always try to refocus by thinking about our family verse, Philippians 4:8:

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”

I felt a breakdown coming on while I was in the room waiting to hear from the surgeon about Malachi. As I tried to refocus my thoughts, something popped into my head…

We chose this life. Why should I mourn over something that I chose?

We could have avoided all of this stress, this pain, this heartbreak. When Malachi was just 3 days old we were given the chance to discontinue his lifesaving care. But we both so firmly felt that we were to choose life for our son, and that his time on earth was to be decided by God and not us. We asked them to save our son that day. They presented us with the likely outcomes for Malachi with the extent of brain damage he had suffered, and most of those predictions have rung true.

We could have tried again for that easy life we dreamed of…that problem free baby. We could have made the decision to give Malachi his heavenly body and spared him this challenging life. But we felt so strongly in our hearts that God had work for him to do here on earth first…regardless of how “imperfect” he might be. God has a gift at working through the things that we see as broken.

Every day of Malachi’s life, even the hardest and darkest days, has been a blessing.

If we could go back to that room and have that same conversation again knowing all that we know about Malachi, we would choose this life again and again. Our Malachi is a world shaker. He is a life changer. He is a glimpse of God.

“Blessed are the pure in heart for they shall see God.”

Through Malachi we have been given the privilege of sharing the very reflection of God’s love with the world. The joy of the Lord flows through him. Malachi is loved by God, and is His beautiful creation.

We were given a very special gift this week from someone whom we have never met. She had read about my sadness at never being able to get a really good picture of Malachi as he usually turns his ear to the camera instead of his eyes (he is legally blind but can hear very well). She sketched this beautiful picture that brought tears to my eyes and gave me chills.

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We chose this life, and we would choose it again and again and again. Can you imagine a world in which Malachi had not lived?

We choose you again and again, sweet son. You have already impacted the kingdom of God more in your 5 years of living than most get the opportunity to do in a lifetime. You are a vessel for the Lord and what a blessing God has given to us in you.

Please join us in prayer this week for healing and comfort for Malachi’s body. Pray that we are able to find answers and treatments in the least germy environments we can. Pray for wisdom, as that is always a need in our parenting choices with these boys.

Thank you for being a part of our journey,

Leah

 

 

 

Honoring Others

Tomorrow (Monday) is g-tube surgery day for our sweet Malachi. And I am just so sick to my stomach over it for several reasons:

  1. Malachi is SO much more cognitively aware than he has ever been. In fact, his last surgery was in 2016 so he likely doesn’t remember the routine of things. I have been trying to explain to him about having to be carried away from momma by the nurses and how when he wakes up he is going to be sad and cry really hard. I told him his tummy will hurt for a little bit but will start to feel better after a few days. And momma will be there to play music and snuggle him when he wakes up. I have explained how we will have to stay a few nights in the hospital and won’t be able to leave the room and go on adventures. I am trying to prepare him as best as I can but this is going to be very hard for him this time around on a cognitive level.
  2. This will be my first night away from Levi, with the exception of the two nights after he was born and taken to a different hospital. I have full confidence in Jake but just love that little boy so much.
  3. I am struggling with some major PTSD right now. This is surgery #34 for this momma, and I have been alone for nearly 18 of those. Tomorrow I will be flying solo as it really isn’t in Levi’s best interest to bring him to a hospital unnecessarily where he can contract something new. I can definitely handle things alone, but surgery days are emotionally hard. (Don’t read that as a plea for company…I am confident I can’t handle company during these waiting times. I have tried before and it somehow makes things worse.)

I have probably hugged Malachi 100 times in the last 24 hours. I love that boy so much. Every ounce of me wishes I could take this pain from him.

The g-tube part doesn’t phase us as Levi already has one. We know how they work and what they look like so they don’t intimidate us, but we still wish he didn’t have to have one.

While this surgery isn’t “medically necessary” right now we know that it needs to happen to help him recover from his hip and foot surgery next month. We always knew the time would come for the tube to go in but wanted to prolong it as long as possible. I would say 5 years is a pretty great accomplishment…go Malachi!

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Both boys are doing wonderful with feeding therapy and today Malachi knocked our socks off at lunch by eating several bites of my chicken casserole. He kept signing for more and enjoyed every bite without choking or gagging.

Let’s talk about this crazy week we just had…

As I told you last week, our soccer team had the unique and wonderful opportunity to play at the state tournament. Jake left with the girls on Tuesday and the boys and I followed on Wednesday, making it there just in time for warm ups. Some wonderful friends from church offered to drive over (2.5 hours) and sit with the boys on the sidelines for the duration of the game so I could enjoy being just “coach”. What a blessing that was for me.

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After 78 minutes of a competitive match, our girl’s knocked in the ball (with just over a minute on the clock) winning the game! We were overwhelmed and speechless. The last time a team from our tiny little town went to state and won a match in ANY team sport was in 1983. We have 19 girl’s on our roster…every girl that tried out made the team as we don’t have a huge group to pull from. Most of the other schools represented in the state tournament were private schools or came from the suburbs of large cities (like Nashville and Chattanooga).

This photo speak volumes:

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And here is a video of one of the two goals from that game if you are a soccer enthusiast. Both of our goals were headers, which is rare and fun:

 

The girls were scheduled to play the following day (Thursday) so we headed back to the hotel. The next morning Levi woke up screaming like a wild man and when he couldn’t be consoled we wondered if something was wrong. We put him in the stroller and went down to the lobby and he immediately stopped crying; we assumed waking up in a strange place may have frightened him. But as the afternoon went on his screaming would randomly continue and he would get so worked up he would vomit.

I was running on very minimal sleep and since we didn’t have an oxygen concentrator I was limited to moving within 5 feet of the big tank in the room. Not an ideal situation for soothing him. When it came time to head to the game with the girls I made the very hard decision to take the boys back home instead.

I was so incredibly disappointed. I know it sounds silly, but I cried most of the way home over missing this game. We love those girls so much and I wanted to be there and experience this moment with them. Our team ended up finishing 3rd in the state!

We made it home late Thursday night and I raced the boys and the necessary gear in, watching intently for our bear friend to make sure he wasn’t sneaking back onto the porch. As soon as we got into the house Levi started laughing hysterically- he was so happy to be home. But he was up and down most of the night and started running a fever of 101.

The next day I decided to take Levi to the doctor. I battled this decision fiercely…I was pretty confident that he had an ear infection only, and exposing him AND Malachi (who was getting ready to have surgery) to a doctors office seemed like a bad idea. But I had no other options so to the doc we went. I called ahead and worked out the plan to wait in the car with the boys until the doctor was ready to see Levi. They were going to clean out a back room that hadn’t been used by any kids that day and put us in it, attempting to eliminate any unnecessary germs.

Great plan…until the receptionist that was going to call us left for the day and didn’t pass the message along. I have a knack for being pesky and didn’t want to annoy them so I tried very patiently to wait. I have been trying to work lately on giving grace, as that is a struggle sometimes. Levi napped and Malachi and I sat in the front seat and played. Levi woke up and started screaming again so I decided to check in (it had been almost an hour). When I realized I had been forgotten I started to get very emotional…those floodgates are pretty weak these days and the lack of sleep didn’t help. They got us in immediately and the doctor verified that it was an ear infection. After starting on some antibiotics, Levi is now back to his happy and chipper self.

And just as predicted, he has learned how to rock the car seat so hard it gets stuck upside down (not completely, just propped with his feet dangling over his head).

Back to soccer…

Jake and I have been completely humbled that the girls have achieved such a big goal. At the beginning of the season we asked them what their vision was and they said they wanted to go to state. We told them we would do everything in our power to help prepare them and make that happen and they did it!

There were several moments during the game that I would look over to Jake and find that he had disappeared off to the side out of sight. He would be down on his knees with his hands raised in the air, clearly praying. I know Jake well enough to know that he wasn’t pleading to God for a victory, but later I asked him what that was all about. He explained that lately God has been telling him “Honor me in this moment”, and each time God speaks it, Jake immediately obeys.

You may not know this about Jake but he is incredibly competitive. God knows our hearts, and I think God speaking those words to Jake during game times is no accident. He wants Jake to remember that even in the little things, the everyday mundane, we are to honor Him. Or maybe those moments of Jake on his knees honoring God were for someone else there…a reporter standing off to the side, a player on the field, a mom on the sidelines. God’s ways are mysterious, but when He speaks we should always desire to obey, even when those moments could feel out of place and embarrassing.

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I am thankful for Jake’s obedience. And I am thankful for his walk with the Lord. He offered an optional Bible study at the hotel for the girls and almost all of them came down for it. We always talk to each other about the special calling God has placed on our family. We may not be harvesters for the kingdom of God but we recognize the role God has called us to as seed planters.

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A neat side story- the coach of the team we played on Wednesday left this message on last week’s blog:

Hi Jake and Leah. Congratulations on the win last night! Your PCHS girls played some inspired soccer and were fun to watch. Cool story: I coach the Grace Christian girls and yesterday afternoon as we were preparing for the game one of our moms sent a link to your blog to my wife. I was in the midst of my typical pre-game angst and asking God what he wanted me to share with the team as we prepared to play. She sent me the link with the caption “Some perspective…” I was so moved reading about your journey; I shared the blog with our girls as our pre-game devotional and talked about how there are no coincidences with God. We often have no idea what He’s doing and He connects us with people and stories for reasons only He knows. All that to say, although our girls are devastated by the result last night, you have some new prayer warriors praying for you and Jake and Malachi and Levi in Franklin, TN. As a team, we’ll continue to pray for you, your family and your work there in Polk County. And good luck to you and your girls today! Go ahead and win this thing!!

This kind note humbled us even more as we watched God do His thing! Last week after I typed the blog I turned to Jake and said “Well, that wasn’t a very good entry but I am just too exhausted to think.” But God. He can take what we see as broken and messy and turn it into a beautiful thing to someone else’s eyes. Like that coach said, we often have no idea what He is doing and there are no coincidences.

I have personally been having a rough few days. It may be pre-surgery nerves, it could be the continual sleep deprivation, it could be the devastation of not getting to stay for the final soccer game…there are several culprits, but regardless the feelings are there.

I have been focused on a verse this weekend from Romans 12 that says “Be devoted to one another in love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer.” I keep reading it over and over, processing each command.

Honor one another above yourselves. This part has been challenging me and consuming my thoughts. It is similar to the golden rule, “Do unto others as you would have them do unto you”, but is an even greater challenge to honor them ABOVE yourself. Yikes! That is a tough thing to do.

In my crazy life this command towards my children is not a hard thing to follow, which I think most moms would agree is true for their children as well. I HAVE to put their needs above my own. They can’t do anything on their own so it falls to me to do. But what about my marriage with Jake? That takes some conscious effort to apply the command there.

I am going to tell you a story, but I don’t want this to be taken the wrong way. Jake and I are happily married and to give the illusion otherwise would be inaccurate. We praise God daily for the strong marriage He has formed between Jake and I; the statistics show that the divorce rate for special needs parents is 80%. We recognize we are an anomaly, and work hard to stay on the good side of that statistic.

That being said, here goes…

I was a frazzled, and as we say in the south, “hot mess” when Friday rolled around. I had driven over 300 miles alone with one epileptic special needs child and one screaming ear infection ridden baby. I was having to pull over at rest stops to make sure everyone was staying hydrated, medicated, and poopy free. I was running on 3 hours of sleep, spending 7 hours that night rocking each of my children in my arms. I missed at least two meals a day, some days not eating until 9pm.

Jake came home Friday afternoon and I was so thrilled to have reinforcements. He helped me get the kids ready for bed; Malachi has to be held upright as he falls asleep or he has major seizures, so Jake took on that role and when he was asleep carried him to bed. Levi was wide awake and has been staying up until around 1am. After Jake laid Malachi down he disappeared. I assumed he was reading his devotional or unpacking his suitcase but after several minutes of silence I went looking for him. He had gone to bed. And boy was I jealous. And then boy was I a little mad. And then boy was I furious. He had just spent 3 nights alone in a comfy and quiet hotel room, getting 10+ hours of uninterrupted sleep, and I was the one staying awake with the wild child.

As women often do, the more I processed the more frustrated I became. I secretly wanted to dump a pitcher of cold water on his sleeping face, but refrained. I started thinking, why is it that I put everyone else’s needs above mine but no one will do the same for me? Why am I not a priority to others? I thought about the verse “Honor one another above yourselves” and got mad at Jake for not doing that for me.

A few hours later I went to bed, still extremely bitter at Jake. I looked up that verse again to read it, but this time I kept reading…

“Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.”

Ahhhhh man. Conviction. Ugh. Surely if Jake had gone to bed like that he must have been exhausted too. And playing the “I’m more tired than you” game never ends well, often leaving both of us resenting one another.

Honoring others above ourselves is not meant to be an easy thing. It goes against every bit of our nature. But when we do obey that command it is not necessarily about serving these people, but rather it is about SERVING THE LORD through our love towards others. It isn’t about Jake, it isn’t about Malachi, and it isn’t about Levi. It is about honoring God by serving others and fulfilling their needs…it’s not about doing these things with an expectation for return on the investment. It is about doing it with the heart and the mind of Christ, with zero expectations in return.

When we honor others, we are honoring God. My heart needs to reflect that motive instead of my selfish ones. 

And maybe, just maybe, I need to be plotting less about the pitcher of cold water.

And before you start sending Jake hate mail, know that he did get up with Malachi later that night for his 4am wake up which allowed me to get a straight 7 hour stretch of sleep. Amazing sleep.

And then there is the beauty in the challenge of the final part of that verse : “Be joyful in hope, patient in affliction, faithful in prayer.” All three of these things are challenging on their own. Throw all three in the same sentence separated by commas and boom. But I am claiming these words over our family tomorrow and will be striving to obey each command.

I pray that I can be joyful in hope as I wait anxiously in the pre-op room tomorrow. Malachi is very in tune with my emotions and I want him to feel joy from me instead of nerves.

I pray that I can be patient in affliction. The waiting game while your child is in surgery is incredibly miserable. This particular surgeon has wonderful nurses who oblige my request for frequent updates during the surgery. Part of me is sad that I know these surgeons and their staff so well, but anyway… while he is back in the operating room I sit close to a phone and wait for it to ring which it does 5-6 times during the procedure. Those hours of waiting drain my emotions. In fact, when I finish this entry the next thing on my to do list is to chop all my fingernails off so I can’t pick at them tomorrow during this time.

Faithful in prayer. God did not give us a spirit of fear. So when I am overcome by that fear the best route to clear it is prayer. But sometimes the devil gives me amnesia and I forget that fact. I allow myself to get overwhelmed by that fear instead of releasing my worry to God. Tomorrow I will be trying to be extra vigilant on focusing on faith over fear.

Please join us in prayer that tomorrow stays complication free and Malachi is able to have this procedure done laparoscopically (vs open incision). And pray that God overwhelms me with his presence and takes away that isolation I have been feeling lately.

Sincerely,

Leah

 

 

 

Tend to the Fire

Jake and I wear many hats. But we have orchestrated each one in such a way that we rarely have to wear them all at once. We compartmentalize each “role” we have and life just chugs along, us living day by day and doing our best to give 100% to each one.

For example, here was today’s crazy schedule:

Saturday night we went to bed around 12:30am

4:00a-6:00a Up with Malachi

7:00a-8:00a Up with Levi

8:30a-9:30a Made Jake get up with Malachi haha

10:00a-11:00a Went to Sunday School

11:00a-12:30p Taught Children’s Church

4:00p-5:30p Soccer Meeting

5:30p-6:00p Staff Meeting at church

6:00p-7:30p Took youth group to the pizza buffet

8:00p-9:30p Soccer parent meeting

10:00p-current       Blogging it up!

In addition to all of that was feeding children, changing diapers, bath time for the boys.

So the good news is that our soccer team has won their district, their region, and their sub-state game and they are now headed to Murfeesboro, TN (about 3 hours from us) to fight for the state championship. If you don’t know anything about soccer just know this is a HUGE deal for the girls and for Jake and I as their coaches! We are so proud that their hard work has paid off.

But with this honor comes a whole lot of hard work for our little family. All week long we have been scheduling referees, painting fields, meeting with coaches, hosting games, coordinating 19 players and their parents. This is all in addition to me working part time, tackling medical appointments, being youth minister and doing lesson plans for the children’s minister job. It has been a whirlwind of busyness for us!

As we head to the state tournament we add to the list: hotel, food, chaperones, transportation accommodations for 19 high school girls. Then the actual trip for me and the boys (Jake will already be there a day early with the team). But we never shy away from a challenge so Murfeesboro here we come!

Is all this busyness in life necessary? Absolutely not. But Jake and I firmly feel that we are called to make a difference in as many lives as we can while we are here on earth. We recognize that so many teens in our county don’t know Jesus, and if we can show them a little bit of Jesus as their coach, teacher, friend, mentor, youth pastor then it is worth all of the stressful days. We always want our lives to be about others rather than ourselves.

A week from tomorrow Malachi will have surgery to place his g-tube. We really need help with prayers over this surgery as it could be a smooth and easy one or it could be difficult. Our goal is to place it laparoscopically but with the amount of scar tissue in his belly we may have to do a large open incision to be able to place it. The plan now is for Jake to stay home with Levi, as we are very worried about exposing him to hospital germs and sickness. Malachi and I will have to stay at least one night, based on the type of incision we end up doing.

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Levi’s eye appointment this week was canceled. The doctor we were scheduled to see went on maternity leave the day before so the appointment has been pushed off until November. I was trying really hard to keep our November relatively open since we have so many pre-op and post-op appointments for Malachi’s next surgery but unfortunately it is filling up fast. We need some major prayers that we all stay healthy enough to handle the chaos that is coming.

Both of the boys have been hilarious this week. Levi has started talking to Malachi, and hearing his little noises warms my heart. I tried to snag a video this week, but this was the best I could do:

He has been turning lots of heads with his rocking action. We are having to keep him strapped in as he has almost flipped the seat several times!

And Malachi still LOVES Levi so much. He has been filled with joy this week, more so than his normal. He really enjoys going to the soccer games with us and even cheers on the team. There is a girl on the team named Maggie and he shouted her name as clear as day TWICE. Here is a video of him laughing at Levi:

Malachi rode his horse like a champ this week, pretending to be a superhero the whole time. His whole face changes when he is pretending and he gets very serious while he puffs out his chest dramatically. He is a ham.

Levi will turn 1 in three weeks…that seems so unbelievable to me. But too many emotions, so I will save that for another post.

And just to keep us on our toes, another bear came for a visit this week! I heard him around 3:45am and peeked out the window to see the largest bear I have EVER seen right outside our window. He picked up our wheeled trash bin (with 3 full bags of trash) and carried it like it was nothing 50 yards away and into the woods. After I saw his size and the ease of which he carried the trash like a coke can, taking the shotgun out on the porch (firing it to scare him only- not hit him) seemed like a really bad idea. He came back about 45 minutes later to check out the rest of the porch then went on his way.

To be honest, I am struggling with a little bit of conviction this week. Watching all of these intense soccer games has brought out the competitive side in me and I have caught myself yelling pretty loudly at some of the games. Now granted, none of what I yell is necessarily mean or hurtful but I wonder what those moments of impulse say about me as a Christian. I always want to reflect God, and when I find myself getting mad about silly things that is definitely not an accurate reflection of Him.

We had a rainy day this week and anytime it rains my day gets more challenging. Nothing can be done quickly with the boys, and loading them in and out of the car alone can take about ten minutes, leaving me soaked to the bone.

We happened to have feeding therapy on this rainy day and by the time we made it in I was on the verge of tears, just overwhelmed and feeling defeated. It took me longer than normal to get the boys out of the car so we were a few minutes late- something I HATE. As I wheeled through the doors of the therapy office I started smiling, thinking to myself about what an insane life we have. It was one of those “laugh so you don’t cry” moments.

As I raced down the hall, leaving a trail of water from our rainy clothes a woman stepped out of her office and flagged me down. She said “I don’t know you, but I see you come in here each week with your hands so full. But you always have a smile on your face. It is so encouraging to me every time I see that.”

I don’t take compliments well and usually get awkward (even when the words truly touch me), and this time was no exception. As I verbally fumbled my words trying to think of a reply, the therapist walked up and said to this woman “It’s because she is a Jesus lover.” The woman smiled at this new piece of info and nodded like she knew it all along.

I keep thinking about that conversation. I keep thinking about the impact we are supposed to have on our world. I desperately want for God to be seen in me. I desperately want to be known as a Jesus lover, not by my words but by my actions. I want to be a lighthouse for His light.

My job as a daughter of Christ is to keep that light within me shining brightly. Trust me- it fades when you aren’t tending to that fire. And truthfully, I think that is part of the problem I have had this week with my sports enthusiasm. I haven’t been into the Word as much as I should be.

But thankfully each day has new mercies and I can change that routine starting now.

Please continue to pray for the Carroll family as we tackle this messy life day by day by day…

Love,

Leah

 

 

 

The Crazy Sock Mom

Y’all, we got a good picture! In the six minutes of peace before the headbutting incident from last week she was able to capture this beauty! Boom.

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It was early in the morning one day this week when the question hit me…

“What kind of mom would I have been?”

I am constantly battling the temptation to think about what kind of child Malachi would have been had things gone differently. I continually catch myself dwelling on those thoughts.

But sometimes I mourn over the things I am missing as a mother. And as that question swirled around in my mind throughout the week it started to shape the lens I looked through in my daily tasks.

I walked through the store to find socks for Levi I caught myself reaching for the cute socks- only to redirect my hand towards the ones that I knew would help hold his pulse oximeter sensor on better when he sleeps. The boring socks. I would have been a mom that picked the fun and crazy socks. Sometimes I wish I could reach for the crazy socks.

I walked to find clothes for the boys and quickly bypassed the ones in Malachi’s size with a popped collar. Shirts like that can suffocate him if I am not watching him closely. And I sadly breezed on by the cute clothes for Levi knowing that they wouldn’t protect his g-tube site from his grabby hands and they would not accommodate his tubing without me hacking the outfit up with scissors.

I would have been the mom that was known for hugs and kindness- known for drying tears instead of creating them. Known for kissing boo-boos and not known for allowing surgeons to create those painful scars. I would have co-slept, not fearing that my 5 year old might accidentally smother himself in his pillow during a seizure. Or that my baby might roll enough that his oxygen tubing might wrap around his neck and suffocate.

I would have been the mom that bought bath toys, knowing that bath time could be fun! Never did I dream I would be wheeling one child into a shower and fighting his body’s instincts to try to get all of him clean. Or prepping the baby tub for the other child, spending 15 minutes preparing all the extensions, oxygen tubings, dressings, and tapes then wrestling him to keep his hands away from his now exposed tummy tube.  Buying the bath toys right now gives me something else to mourn over as they would sit on the shelf untouched.

I would have been a flexible mom that wasn’t stuck on routines. Instead these routines (med schedules, doctors visits, therapies, keep my children alive and improving. I have to walk the same routine path through my house with my 11 month old to keep his 50 feet of oxygen tubing from getting wrapped around furniture as we move from room to room. Even my steps have to be pre-determined and thought out.

I would have been a playground mom. A playgroup mom. Not a mom who sees germs everywhere she looks. Germs were never on my radar. They were simply germs…they made you stronger as they built your immune system.

I would have been a cookie baking, come lick the spoon kind of mom. Never did I imagine that my children wouldn’t be allowed to eat food by mouth safely.

Would I have been a mom who was anti-vaccination? I no longer feel I have the choice to be “that mom”. The decision to be all natural with my children has been taken from me as those medications and interventions that others avoid are the exact ones that keep my children alive. Seizure medications are non-negotiable. The one year we didn’t give Malachi the flu shot he almost died, ended up in the ICU for two weeks. I sincerely feel that vaccinating my children is helping keep them alive.

I would have been a mom that took “mom days”. I would have gone out with friends to get manicures and pedicures. Taken time for me. Instead I am the mom that is mortified by my fingernails as any rare time my hands are empty I am anxiously picking at them. I am ashamed by my anxiety but genuinely don’t know how to relax.

I would have been the mom planning family vacations, camping trips, ski trips, and getaways. I always wanted my children to have experiences over “stuff”. The challenge of finding handicap accessible places and experiences paired with the challenge of packing and transporting medical equipment squashes the dream for being that mom. Instead I find myself planning overnight hospital stays and road-tripping to different hospitals in different states for quality medical care.

There is SO MUCH beauty in my life. But there are also these moments of severe sadness.

As I processed that question this week I listened closely to the Holy Spirit, trying to decide if I was feeding a bitterness root and allowing it to grow. We are called to guard our heart and mind, and I wanted to be sure that I wasn’t opening that battlefield to another attack.

But as the days went by and the thoughts kept coming the conviction stayed away. I ALWAYS feel conviction over my thoughts about what Malachi “should” be like. But that feeling never came.

You see, God doesn’t have an expectation for us to be happy all of the time. He doesn’t expect us to never experience sadness or mourning. In fact, we are told that in this world we will have trouble. There is a time to weep and a time to laugh. A time to mourn and a time to dance. (Ecclesiastes 3:4)

But there is a thin line between controlling our thoughts and allowing our thoughts to control us. And change us. For now I am in a safe range with my mourning…because I continue to firmly believe that God can and will turn my mourning into dancing. I continue to trust, continue to hope, and continue to believe that God’s plan for my boys is more beautiful that the one I  pictured.

But some days are very hard for this weary momma.

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Changing gears to happier things…look at this precious illustration made of our family! It made me tear up this week as it captured Malachi in such a special way. We found a woman on Facebook that makes them for just $20 (plus $5 for each kid) and figured it was worth a shot since photos don’t always capture the best sides of my children. If you are interested in her making one for your family you can email her at walker.courtneyp@gmail.com. They would make an awesome Christmas gift too!

Jake was on fall break this week and having the extra set of hands around has spoiled me! He stayed home with the boys while I went to work in the mornings, and we were able to fit in some fun in the afternoons. Here are some photos from our aquarium trip. The aquarium has extremely low light so Malachi can usually see the fish and the jellyfish pretty well; he always smiles so big when he catches a glimpse of their movement. He also LOVES touching the stingrays.

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I took the boys to their GI doctor this week for a check up. Little Levi is getting chunky weighing in at nearly 19 pounds! Malachi is still hanging at the 25 pound mark and the doctor is hoping to put some more weight on him after his g-tube is placed.

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Malachi also played in his final fall soccer game and even got a medal at his awards ceremony. He is incredibly proud of that medal and wanted to take it to church this morning for all of his friends to see. If you are in our circles and see him this week be sure to ask him about it.

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After the game on Saturday they had a special surprise and brought in some superheros to meet the kids! Malachi was so excited that Batman came to visit!

I have been trying extra hard lately to narrate life to him. The harsh lights of the gym completely stunt the little vision he does have. This was his face when I told him that Batman came to visit him:

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The boys tagged along to soccer games with the high school team, bowling and arcades with the youth group, and all kinds of other adventures. The soccer team that we coach just won the district championship so this week they will be battling for the regional championship title. The weather officially changed this week so I am hoping I can still make it out there to the games, but obviously the boys comfort and health trumps my coaching desires. We are so proud of our team though!

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It really was a wonderful week for the four of us. This week we will be heading back to the eye doctor for Levi to discuss surgery.

We are inching closer and closer to surgery days so we need to continue to cover the boys in prayer! We need them to be completely strong and healthy heading into this next branch of our crazy life. Please join us in prayer over their bodies.

Faith over fear.

Love,

Leah

 

 

 

Brotherly Love

Another busy week in the Carroll house. Three high school soccer games, a youth group hike, Malachi’s soccer game, oxygen delivery, physical therapy, feeding therapy, and horse therapy. And my new office job has been going great!

Not a whole lot of Levi updates for this post. We are still patching in preparation for our eye appointment next week. And Levi is all about cups these days so we have been letting him play with a sippy cup at mealtimes. One day soon we will try adding something into the cup! Liquids are still an unknown for him so we have to make sure that he can protect his airway from thin liquids.

As you already know, Malachi is in a CDC (Comprehensive Developmental Classroom) setting at his school. During his IEP meeting a few weeks ago we decided to start working him into the “inclusion setting” for a little while each day. That means that he leaves the CDC with the nurse and goes into a typical kindergarten class for a bit.

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This week was his first week with his new classmates and the regular teacher (who happens to be a friend of ours) asked me to come in and speak to the kids about Malachi’s differences. They were all so attentive as I explained that Malachi’s brain doesn’t talk to his legs and tell them to move. I purposefully didn’t spend a lot of time telling them about the things that Malachi CAN’T do but instead focused on the things he CAN do. I really want them to see his ability instead of his disability.

Malachi was so excited to talk to his classmates and readily showed them his communication signs when I asked him to. They had the chance to ask questions and none of them seemed to be nervous around him. He was thrilled to have the audience and loved hearing me talk about him. He is a compliment hog.

I am all about awareness when it comes to children with disabilities. It is so important that we, as Malachi’s parents, allow people to get to know him so that maybe it will impact the way they treat strangers like Malachi out in public.

Malachi has been so strong lately. He has been sitting up straight and tall with sudden bursts of strength and we always try to make a huge deal out of it to encourage him. I was able to catch his silliness on video for you:

Foolishly I keep continuing to believe that one day I will actually get a good family photo of all four of us. A friend of ours was doing short 20 minute photo sessions and I thought we would give it a try. She also has a daughter with special needs so I knew she would be up for the challenge. I meticulously planned it all out, ironing tiny baby clothes and even going as far as blow drying and hair spraying Malachi’s hair, much to his delight. Levi decided he didn’t want to nap that day and as we inched closer to the appointment time I had a suspicion this wouldn’t go well.

We got there a few minutes early and each tackled dressing a boy. It was important to me that Levi not have his oxygen on for the pictures so at the last second we peeled it off his face. About 6 minutes in we were seated on hay bales and Malachi realized he was awfully close to Levi….close enough to head butt him. He flung his little body at his brother and BOOM they hit heads. Levi started to cry, much to Malachi’s delight. I was able to calm Levi down slightly so back to the hay bales we went, but Malachi had figured out a way to make Levi cry and wanted to do it again. Little stinker.

The head butting attempts continued, Malachi determined to make Levi cry again. Oh, the brotherly love. Within a few more minutes exhausted Levi was hysterically crying causing me to run for the oxygen. At that point I was saturated in my own stress sweat, feeling anything but beautiful.

We haven’t gotten the pictures back yet but be assured there will be a few with Malachi’s mischievous smile. And a few with Levi’s tears. And probably a few with a tired eyed and stress sweating Leah.

I have such a hard time managing disappointment. All the preparation for that 20 minute photo shoot and it definitely didn’t go like I had hoped. I was genuinely mad and sad as we drove away. It was one of those moments where I caught myself saying “Why can’t I get decent family photos like everyone else? Why can’t we be normal?”

Since we had driven 30 minutes for the photos and were all dressed up we decided to go out to eat. What an adventure that proved to be! Malachi was still fueled by the fact that he made brother cry and with a sudden and random burst of strength, started throwing his crayons. Literally throwing them- he has never done that before. We were actually impressed more than angry. At the same time, Levi was on a rampage trying to grab my full cup and tearing the menu. I had my arm raised in mid air with a buttered piece of bread and Levi knocked that sucker right out of my hands and onto the floor.

Jake and I couldn’t help but laugh, as were the people around us watching our “quiet family dinner”. We finally waved the white flag and headed home for the night. As I walked out to the car I was still a little bitter about how things had played out when I noticed something squishy on the bottom of my boots. Yep- you guessed it- I had stepped on the buttered bread, squishing it disgustingly into the many crevices in my shoe tread. I threw up my hands and said “SERIOUSLY!” and looked for something to scrape that gooey goodness off with. Then my eye caught a random crayon stuck in the bottom of Malachi’s wheelchair from his throwing rampage.

I was able to use the crayon to scrape off the buttered bread. Makin’ lemonade out of lemons I guess haha.

These boys. They are WILD! I have been trying to teach them about being gentle with each other, as they both could use the lesson. Each day I have been putting them both on my lap so they can be within arms reach of one another. So far we have had some pretty epic fails. I took some photos and a video this week to share with you.

Here is the video:

I have had several people ask about our bear situation. I am pleased to update that while we have seen about a dozen bears on our road in the last few months, they are no longer hanging out on the front porch! And the route that they come and go in our backyard is overgrown which is a good sign the path hasn’t been used lately. They have been spending some time at the neighbors house so we are still very cautious when we come and go after dark.

I had the privilege of speaking in a women’s Bible study this week. God had placed scripture on my heart to talk about but I ended up not even talking about the part that I really wanted to focus on. So I guess I will share that with you all.

The prophet Elijah is on the run from the queen who is out to kill him. After the angel incident I shared with you last week, he finds a cave to hide in and starts lamenting to God about how he wished he would just die. That’s where I will start:

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11 So He (God) said, “Go forth and stand on the mountain before the Lord.” And behold, the Lord was passing by! And a great and strong wind was rending the mountains and breaking in pieces the rocks before the Lordbut the Lord was not in the wind. And after the wind an earthquake, but the Lord was not in the earthquake. 12 After the earthquake a fire, but the Lord was not in the fire; and after the fire a sound of a gentle blowing. 13 When Elijah heard it, he wrapped his face in his mantle and went out and stood in the entrance of the cave. And behold, a voice came to him and said, “What are you doing here, Elijah?”

I have been thinking about these verses for several weeks now, trying to relate them to life. While I have yet to officially grasp what God wants me to take from this, I have come up with a few conclusions…

God speaks in whispers. So many times we want to confidently hear from the Lord. But we don’t take time to listen for the whispers. In fact, anytime I have truly heard from God it has been in moments of silence. The night Malachi was born I was laying on my bed in pain and I heard “Get up and go” as my feet hit the floor. I knew that moment was God.

Time and time again I have heard from God in moments of quiet.

Do I seek Him enough in my quiet moments? I find myself “praying without ceasing” throughout my day as I speak my thoughts, frustrations, worries to God. But how often to I stop and listen for God to speak back?

Another thing that keeps striking me about this particular scripture is our habit to look for God when things are chaotic…to look for Him in the earthquakes, the fires, the mountain breaking wind. But we often forget to look for Him in the gentle wind moments of our lives. We forget about how constant God is, and how He tells us He will never leave us or forsake us.

We mistakenly see Him as a presence that comes and goes based on how our lives are going. We forget that God lives within us and is present in all circumstances.

This week I will be focusing on finding God in the quietness. I will take those rare moments of gentle breezes in my day to acknowledege Him. And listen to what He has to say.

I realize that some of you may have never had that type of encounter with God so I feel led to explain what I mean when I say “listen to God.” Hearing the actual voice of God is not what I hear…but God places words, commands, and promptings on my heart and mind. And when I hear them I KNOW without a shadow of a doubt that those thoughts are not my own.

My prayer this week is that you encounter God.

Please pray for our family as we are coming up on some pretty intense days. Malachi’s first surgery (g-tube) is on October 29th and his hip/feet surgery is on November 20th. We will find out more about Levi’s eye surgery when we see the doctor next week. Pray for guidance and wisdom for Jake and I as we make big decisions on behalf of our boys. And pray that we can all remain healthy through this winter season. Jake, Malachi, and I all got our flu shots this week and we need to pray a hedge of protection specifically over Levi.

God bless,

Leah

 

Unstained

Let’s hear it for a tear free week! I think last week depleted the tear reserve.

There is something very special going on with Malachi’s little brain and I have been so encouraged to see such big changes in him lately.

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This isn’t exactly the best picture of Malachi but it is significant to me as his wheelchair is inclined as upright as it will go! His head control has been amazing today. What a big boy.

Every day he does something to remind me how intelligent and “typical” he truly is. This week we saw those moments frequently. In his soccer game on Saturday his team had so many players show up that they had to take turns playing. When it was Malachi’s turn to sit on the bench I told him he had to take a break and let his friends play and he cried big giant crocodile tears. He DID NOT want to sit, he wanted to play! When Malachi cries, it really does break your heart. It is pitiful. We explained to him that everyone had to take a turn and that he had not done anything wrong and he stopped crying.

By the way, he scored two goals this week! Go Malachi!!

He is also getting better at voicing (usually by signing) his opinions and decisions. We present multiple options, giving a pause after each one to allow him to sign yes. He loves the power it gives him. We let him choose what cartoon he watches, what bib he wears, what stuffed animal or toy he wants to take out with him.

His imagination continues to blossom. This week he was pretended to be a dinosaur and I made the mistake of picking him up…that stinker roared  and then bit my cheek and laughed about it. He knows better, but definitely got wrapped up in the imagination moment.

This week we had a hospital day in Chattanooga and Malachi had to get blood drawn. Jake and I are extremely protective over Malachi so he doesn’t often feel pain like a walking child would. He doesn’t trip, skin his knee, fall down. So when it comes time for him to get a shot or get blood drawn he usually cringes slightly, then laughs at the quick pain moment. Sweet boy. This week’s blood draw only took 2 needle sticks, praise the Lord!

Funny side note- while we were at the hospital (for our neurology appointment ironically enough) they decided to test the fire alarms. That meant I had to wind my way through the hallways with my 6 foot giant stroller, opening every single heavy metal door (12 to be exact) that had shut for safety reasons and trying to maneuver the stroller through. By the end I was laughing at the ridiculousness of the timing, and the fact that I was pushing my epileptic child through hallways with flashing lights, saying prayers they wouldn’t send him into a grand mal seizure like last time.

I told Malachi that morning that we would have an adventure after his appointments so we headed to the zoo. It was an overcast day and a decent temperature so I figured it was a good day to try out a zoo trip solo with the two of them.

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It was a HUGE success! The cooler weather brought the animals out from hiding and almost every one we saw came right up to the window to see the boys. One of the monkeys gave Levi the stink eye then made a jump for his face. I figured Levi would be terrified but instead he was simply fascinated.

 

Malachi got to feed celery to the camel and pet a goat. We even got the black crow to say hello back to Malachi, much to his delight. I am a sucker and bought Malachi a toy snake from the gift shop (he adamantly chose the red one) and he has loved “scaring” people with it. It has been the topic of conversation everywhere he takes it.

 

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I can’t really explain it well, but those brain changes I was talking about with Malachi were very evident on our zoo outing. He was so engaged and interested in what was going on around him. He searched with his eyes for every animal. And he listened intently to every word I said about the animals. He was particularly excited about the jaguar because one of the cartoons he watches has a jaguar in it.

We are going to try the aquarium next time around!

Levi has been tolerating his eye patching so much better than expected! I don’t really know how long it takes to see results from the patching but we are praying that the next eye appointment in three weeks goes better than the last one.

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Levi is the wiggliest child I have ever met. It is almost unbelievable until you hold him yourself. I am struggling with the comparison game as I look at other babies, realizing how far behind Levi is for his age. I have to keep trusting that God is continuing to heal his brain.

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Speaking of trusting God, Jake and I continue to believe that God will supply all our needs. He hasn’t failed us yet, and I am confident that He will continue to be our Provider. But we also look for times when God provides opportunities for US to supply our needs. Recently the secretary job at our church opened up and I felt led to pursue it. It is too long of a story to post on here, but after many ups and downs in the process I will now be working at the church office on Monday, Wednesday, and Friday mornings. It is such an accommodating job for our situation as I am able to take both boys with me. We brought some baby gear and one of Malachi’s new adaptive seats to the office and this past week went smoothly. It is so refreshing to have a non- mom thing to do with my brain. And we are so thankful to God for opening that door for me.

 

This week I will be speaking to our Wednesday night women’s class. This is an interesting task, as they already know our story. They have had a front row seat! So I have been praying for God to show me what needs to be said. Last week God gave me some guidance to talk about how quickly we can go from a mountaintop down to a valley. Oh boy, I know all about that experience haha!

My friend Johnny that passed away last week had a verse that he always quoted to Jake and I.

James 1:27  Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress and to keep oneself unstained by the world.

This week I keep repeating this verse over and over again in my head, and as I often do I have been fixated on one word…”unstained”. The more I thought about that word, the more imagery I got from it.

God has placed each of us exactly where we are for a reason. But part of our task as His children is to not allow the world to stain us. We are to be in the world but not of the world.

I started thinking about the ways I have allowed the world to stain me. Like my mentality that I “deserve” things. Or the innate desire to put myself first as often as possible. Our world breeds selfishness and tries to convince us that it isn’t a bad thing.

On Saturday we went to Malachi’s soccer game and then went for a drive. We have a Mennonite community about 15 minutes from us and they sell baked goods, fruits, vegetables, and other crafted things. It is usually packed out on Saturdays but since we were that direction anyway we decided to stop.

As we drove onto their land I could see tiny little toddlers running around with their older siblings and playing on hay bales. One little girl, about 6 years old, shyly smiled and waved to me as we drove by…watching us with such curiosity. The simplicity of the moment was beautiful. That word “unstained” popped into my mind as I thought about how much easier that charge might be for that little girl as she grows up in such an isolated place.

But then I realized that the staining comes from within. The world changes us from the inside out. While they have less influences in the Mennonite community, the temptation towards the things that stain are everywhere. Even Adam and Eve in a God given paradise were drawn to the things that stained.

But God is a God of grace. He knows our nature, and he doesn’t expect perfection. But He DOES expect effort. He expects conscious decisions that bring us closer to Him and further from the world.

Am I giving enough of an effort?

Philippians 4:7    And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

So this week as I continue to word munch on “unstained” I will be praying for God’s peace, that it will help guard my heart from the stains that I may encounter. And I am also praying for sharper eyes, that I can see those stains before I even take steps close enough to encounter them.

May we all do our best to remain unstained by this world.

Much love,

Leah

 

Fed By Ravens

This week has been an emotional one. If the things I am saying don’t make sense today please forgive me.

Let’s start with fun pictures. That is always a fun way to start!

Malachi scored a goal in soccer this week. He also got hit in the face with the ball, and everyone gasped in horror…everyone except for Malachi who thought it was hysterical and giggled.

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And just for fun, here is a picture of Jake playing soccer when he was Malachi’s age:

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Levi has figured out how to undo the med port on his g-tube extension. If he succeeds, all of his stomach can start emptying through the open port making a HUGE (and gross) mess. He has had lots of impromptu baths this week.

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We had a very special visitor this week. The “Chick-Fil-A mom” (as many of you know her) from our viral post last year was nearby and stopped in for a visit with her youngest. I love that God has created such a random and fun friendship for my family.

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Our week was full of “regular” appointments…physical therapy for both boys, feeding therapy for both boys, horse therapy for Malachi…then we added in the mess of non routine appointments…eye doctor for Levi, IEP meeting for Malachi, milestones assessment for Levi, oxygen tank refills. It’s weeks like these that I have to look in the mirror and give myself a pep talk, lying to myself about how I can handle this life like a boss!

Several weeks ago we noticed that Levi’s eyes sometimes turned in a bit when he was focusing on objects up close. I scheduled an appointment with the pediatrician who then referred us to a pediatric eye doctor. Wednesday was the big eye appointment day and I was anxious and eager to hear what they were going to say. In my mind, I had decided that Levi had simply inherited his dad’s bad eyes and would need some cute glasses. I had even gone so far as to take time imagining how cute he would look, but how busy his little face would be with oxygen, tape, and now glasses!

The appointment was an hour away and set for 8:45. Whenever I meet with a new specialist I like to make sure I am dressed somewhat professionally so they take me seriously. I learned several years ago that first impressions only happen one time and when you dress like an educated and professional momma, doctors tend to treat you like one. I set the alarm for bright and early and we hit the road. I was feeling pretty good about my planning ability and was set to get there 15 minutes early- plenty of time to get the boys unloaded and inside. We wheeled up to the office to check in and the lady behind the desk informed me that while this was that doctors office, he was at a different location that day. She pointed me across the street to another building. Lovely.

I had plugged the return address on the registration packet envelope into the GPS and when I showed that to her she said “Oh, you must have accidentally gotten some of our old stationary. So sorry.”

Back down to the car we went and I strapped everyone back into their car seats, loaded up the wheelchair and the stroller, and headed to the next building. It was a ten second drive, then unloaded everyone and everything again and raced into the building. My gap of extra time had dissipated by now and so had my patience. We checked in and waited nearly two hours before seeing the doctor which increased my frustration even more.

I played the “shadow watch” game and stared at the bottom of the door, hoping that one of those passing shadows would be the doctor coming in to see Levi, and finally the door opened!

The doctor looked at his eyes and said “Yes, well he is definitely cross eyed! We see that a lot with kids that have suffered brain damage.” I was very taken aback and felt myself starting to get defensive, which is silly. I explained that he wasn’t cross eyed all the time, but that one of his eyes occasionally turns in when he looks at things up close. He said “Well, he has been cross eyed the entire time I have been evaluating him.” This confused me even more so I pulled out my phone to show him a picture of Levi from the night before and asked “So this is cross eyed?!?” He replied, “Well in that picture he isn’t.” which just added to my confusion.

The part that hurt the most was hearing him referring to Levi’s brain damage. At one point he used the words “Brain damaged kids like him…” and the hair on my arms stood up.

He said that sometimes the dilation they have to do for the eye exam can weaken the eye muscles but he felt confident that Levi’s muscles were affected by his brain damage. His eyes are structurally fine. I asked the doctor what the treatment was and he said “Surgery ASAP.”

I felt like I had been sucker punched in the gut. This isn’t what the outcome of this appointment was supposed to be like. There was supposed to be an easy solution, an easy fix.

The word “surgery” is starting to become a trigger for me emotionally, as my heart just can’t handle seeing my babies go through the pain of not only the surgery but the process too. IV pokes, nights in the hospital, scars. Little Levi has had 20 stinking surgeries. Malachi has had 13 and has two more on the books for October and November.

I could feel that imaginary water rising and putting pressure on my neck. This is always the first sign that an emotional break down is about to happen. I wasn’t in a place to be able to ask a lot of questions so I just listened. He explained that Levi has 2 eye issues: 1) Amblyopia (lazy eye) and 2) Esotropia (in turning of one or both eyes). To treat the Amblyopia we will need to start patching the stronger eye so the weak eye has to work and get stronger. To treat the Esotropia we will have to do surgery. We are going to patch for 4 weeks then go back in to talk more about scheduling surgery.

The doctor left and BOOM the floodgates broke open. I not only cried, but UGLY cried. I pulled it all back together just enough to schedule the next appointment and make it out the doors of the building. Then I sobbed some more.

Oh how my mommy heart wishes I could take the pain from these boys. I feel so helpless.

I allowed myself to cry more than I normally do and it felt so good. But my pity party depleted my energy down to a dangerously low level.

We went to church that evening and taught the children and the youth, me fighting a migraine the entire time. We hosted a party for the younger kids that evening and set up a 100 foot slip n slide for them to play on. Jake decided to take Malachi for a turn:

Around 8:00 we heard sirens coming from all over town and racing towards the scene of something. I didn’t think anything more about it until Jake’s phone rang an hour later. We received some devastating news that one of our close friends, Johnny Gorman, had just passed away in a motorcycle accident. In addition to being a close friend, his sons are also a part of our youth group so Jake jumped in his car and headed over to the family’s restaurant to be there for the boys.

The news was another sucker punch to the gut as Johnny was such a special friend to us. He wasn’t just a small part of our lives- he coached soccer with us, chaperoned summer youth camps with us, came and sat on our couch for hours talking about religion, and owned our favorite restaurant 5 minutes down the road. We talked at least 3 days a week. In fact, Johnny had just called me on Monday and we talked for over 20 minutes about the upcoming soccer team and religion. He was a huge part of our lives and the idea that he was suddenly gone was really hard for us to process.

His wife asked Jake and I to each speak at his Celebration of Life Service this afternoon- what a honor to be asked to speak about such a great man. We spent the latter half of the week praying and trying to figure out a way to honor his legacy. Jake has also been spending time with Johnny’s son as well as trying to minister to all the broken hearted teenagers around him that are impacted by this- the soccer team, his students at school, the youth group, the employees who worked at his restaurant- so many broken hearts.

I wish that right now I had the emotional strength to tell you about Johnny but my heart and my eyes are just so tired. His service was beautiful and hundreds of people came out to celebrate his entrance into heaven. Jake and I each felt an anointing from the Holy Spirit with our speeches and through this man’s death hundreds of people were able to hear about the love of God. Johnny would have been so happy to hear that his death had the opportunity to give others the chance to hear about eternal life through a relationship with God.

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Here is a picture from last year of Jake (far right) and Johnny (second from the left).

Malachi and Johnny were very close as well. Johnny treated Malachi with such love and respect, and made sure to also treat him like the five year old that he is. Malachi’s eyes would light up when we told him Johnny was coming over, as he knew that he would get to arm wrestle him, put him in a headlock, or pretend punch him in the face- something Johnny would over dramatically react to for Malachi’s amusement.

Here is a small portion of my speech tonight about Johnny that I thought you all may appreciate:

On Wednesday night I fought back tears as I told Malachi that Johnny had gone to heaven to be with Jesus. I watched Malachi’s mind process my words and with such exuberance he sat up straight and signed “yes yes yes” with a burst of joy and laughter. His was so excited to hear that his buddy Johnny got to meet Jesus face to face.

As we celebrate the life of Johnny I hope that we can share that same joy that Malachi had that night. While our emotions may be raw, and our hearts bruised by his passing let us remember that our horrible night was Johnny’s most beautiful one as he entered into the presence of God. Johnny was honored by heaven and heard the words “well done thy good and faithful servant. Well done.”

Thursday I sent Malachi to school only to have them call me an hour later. They said he just wasn’t acting like himself, so I went to pick him up. As soon as I got there, he perked right up and was himself. In my heart I know that the high emotions of Jake and I from the night before had left him unsettled and insecure. He just needed to spend the day with momma and see that daddy, although he was crying a lot, was okay.

Now on to my devotional thought for the evening….

I have likely already shared this with you before, but I have recently started doing a sermon for the children on Sunday mornings. While we are still youth ministers and still have that calling on our lives, God has also been pricking my heart to start spiritually feeding the children in our church as well. At the beginning of the month we kicked off a new children’s ministry and it has been absolutely invigorating for me.

There is something about seeing their eyes light up as you tell them about God that is so uniquely beautiful. This morning we talked about the story of Elijah and one particular part really caught their attention….

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Then the word of the Lord came to Elijah: “Leave here, turn eastward and hide in the Kerith Ravine, east of the Jordan. You will drink from the brook, and I have directed the ravens to supply you with food there.”

So he did what the Lord had told him. He went to the Kerith Ravine, east of the Jordan, and stayed there. The ravens brought him bread and meat in the morning and bread and meat in the evening, and he drank from the brook.

The kids were floored to think that the birds brought Elijah food every day and every night! I joked with them as I asked them how awesome it would be to have a bird drop a happy meal on their doorstep each morning and each night.

But while we may not have birds bringing us food, we still see examples of this protection in our lives. The verse says “I have directed the ravens to supply you with food there.” What we don’t always get to see is the background workings of God. How He orchestrates his creation to serve and provide for one another.

I look at a simple week in the Carroll family and I see so many raven moments…moments God himself has directed for us. Meals dropped off on our porch, tickets paid for at restaurants, opportunities to earn extra income, uplifiting notes, generous financial gifts- all coming from people that say “God laid it on my heart…”

While we may not see ravens, we can definitely see and feel the hand of God on us. What a wonderful peace that brings me. I am fueled and challenged by these moments.

We talked in Sunday School about the verse in Matthew 11 that says  “Come to me, all you who are weary and burdened, and I will give you rest. ”

As I read those words today I noticed that it doesn’t say “I will take your burdens.” It simply says “I will give you rest.”

We have become trained to view burdens as a bad thing. But let me challenge you to remember that sometimes these burdens can be the exact thing we need to strengthen our faith muscles. Yes, when we are weary and burdened we most definitely need to go to the Father for rest. But sometimes after those moments of rejuvenation, our calling is to continue to carry those burdens. And we have to learn to be okay with that. We have to learn to trust that there is something greater meant to come out of the experience.

And we have to remember that when we are walking in faith that God will ALWAYS supply the things needed to strengthen us in our journey. Whether it be through the beaks of ravens or the hands of brothers and sisters in Christ. God will provide.

I was in awe this week as I watched God create some beautiful sunsets:

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Please pray for our family this week. We are very tired and worn down emotionally. Please pray for miracles for my boys. Pray that Levi’s eyes begin to spontaneously heal and his vocal cords begin to function. Pray that Malachi’s hips and feet move back to their original position, and that his brain stops sending the wrong signals to his body. Pray that Jake and I’s hearts can heal as we deals with the loss of a friend. And pray that God gives us the words to help our community process this loss.

I am also requesting prayers for Johnny’s family- his wife Michelle, Madeleine (in her 20s), Jace (16), Levi (12), and Olivia (8).

Thank you for checking in on my family, and I apologize for the jumbled mess of a blog post that this is. I will bring my “A” game next week!

Love,

Leah

 

 

 

 

 

 

 

Hope

Levi is officially 10 months old! Praise the Lord! Here are a few photos from our week; it was bath morning, so he was getting a brief break from the tape on his face.

 

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With my second pregnancy I was really hoping to have that wonderful birth experience I didn’t get the first time around, and unfortunately that didn’t quite happen. I am still at a point where thinking back to that day hurts my heart a bit…I just need a little more time to heal. Even reminders like his 10 month birthday tend to sting a little as so many memories get the chance to flood in.

Speaking of NICUs, let me give a special shout out to all of the amazing people that have generously donated to our “heartbreak box”. We have received enough donations to do 110 gift cards ($20 for a baby item and $5 for Starbucks) which exceeds all expectations I had! What a blessing these cards will be to some heartbroken mothers.

Collecting donations is proving to be the easy part. I ordered all the stationary and started writing the cards this week, and that has been way more work than I anticipated. God is telling me that each one needs to be handwritten- believe me, I have tried to bargain with Him on that one, as each one takes me 8 minutes to write. Little known fact: I have a broken wrist from an untreated break as a child. My hand has shifted significantly over the years and it can be very painful for me to write long periods of time. 8 minutes x 110 cards = nearly 15 hours of writing. Yikes!

But I realized last night that there is an easy solution! I need to let other people help. The control freak in me is shouting NOOOOOO but I think there is a lesson for me in all this about sharing blessing opportunities with others, and admitting when something is too much for me to handle alone.  I have had some wonderful church friends volunteer to write some for me, so between all of us we hope to have the cards delivered to the NICU by the end of the month. I have given them each a copy of the note that I want to put in them, complete with encouragement and scriptures. Will you all join me in praying that God uses these in just the right way and that through them these moms will find hope?

Malachi attended school every single day this week (11a-2p) so mommy and Levi had some fun adventures together (shhhh don’t tell Malachi; he thinks we sit at home waiting bored and anxiously to come pick him back up). Levi and I went to therapy, lunch, and Target on Monday,  the grocery store on Tuesday, and a friend’s house for a playdate on Wednesday. He is officially a momma’s boy and loves the one on one time. Yet somehow he still will only say “daddy”. Figures haha.

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Malachi’s seizures have been back to normal, which for him is 6-8 small ones a day. His large ones have been staying away and we are thrilled. His body temperature is still a little wonky. He ended up running a low temp at school one day and by the time I made it there to pick him up 20 minutes later the temp was gone.

The boys had their feeding therapy sessions on Tuesday and Malachi has been eating like a rock star. He seems intrigued that his new therapist is a man and is very eager to earn some compliments from him. He also has been buying into the idea that he has to teach Levi how to eat like a big boy. Levi is incredibly stubborn and wants nothing to do with food still. Therapy time was non productive, but at home we have had a little more success at getting him to try some new things.

This weekend we stretched ourselves a little thin as we had to be three places at the same time. We wear many hats, and for the first time ever they all needed to be worn at the same time.

The high school soccer team that we coach had a tournament 30 minutes away. Jake is required to be there as he is on staff at the high school so he left with them at 9:45. Not anticipating all the scheduling conflicts, we had scheduled our youth group to serve at the food bank at 9am that morning. And then Malachi had his soccer team pictures and game at 10am…it is hosted at our church and Jake and I unlock the doors for them each week and help get the building ready.

But by golly, we made it work! I unlocked the church early for the soccer crew and told them we would be late, as the food bank was top priority on the list. We want to make sure we are being a good example to the teens about following through with commitments and doing the right thing even when there are more fun options available. Luckily the kids worked incredibly hard and filled all the bags by 10:30 and off to soccer we went.

Here is a super sweet video for you of Levi:

And in true mommy fashion, I feel absolutely guilty that I don’t have any Malachi pictures on the blog this week. I have some from his soccer game but they have his teammates in them as well and want to respect those children and their parents by not posting without their permission. BUT Malachi was in the local newspaper this week, so I snapped a quick picture of the article:

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And comically enough, when I went to cut it out to hang on the fridge I noticed that Jake and I were on the article directly on the back of Malachi’s! What are the odds of that!?

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One word that has been coming to my mind lately is HOPE. So much of my life hinges on those four letters. I know I post this scripture often, but it plays in my mind every single day. I have even included it in my NICU heartbreak cards.

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

One of the things I have yet to lose in our journey is hope. But there are so many moments where it flickers and fades.

Last night I laid in bed holding hands with my sweet Malachi. I had tried to lay him in his bed three times, and each time he cried. At midnight I finally gave up the battle and put him in bed with me…nose to nose, his favorite way to sleep. He reached out and grabbed my hand, smiling at his success. His joy made me smile and as it randomly does, my heart started to break for him. He struggles so much in his world. The simple achievement of finding my hand and grabbing it brought him so much joy- my heart breaks that such a simple task is such a monumental thing for him.

I looked at his sweet little smiling face and prayed to God yet again for his healing. I moved my hand over each part of his broken body, praying out loud as we went. He knows what prayer is and quietly yet excitingly anticipated each new part of the prayer as I moved from his brain to his eyes to his tummy to his feet. My hope is still rooted firmly in the Lord, and I expect God to heal him and make him whole.

But when you hope and pray day after day and never seen that prayer answered it is easy to let that hope fade. And I often can feel that fading as it is happening within me. I start to doubt. I start to mourn over the permanency of his condition instead of believing that he will be healed.

But in 2 Corinthians 4:16  we read “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.”

And what truth there is in that statement for both Malachi and myself. God is so good, and each and every day he renews our inner self. He fills us back up with strength…for Malachi that means he can find mommy’s hand and hold it as he drifts off to sleep. For me that means he gives me enough strength to start fresh the next day with a healthy level of hope again.

As I prayed over Malachi’s brokenness last night I got sidetracked by the quietness in the room. Yes, it seems odd that silence can be distracting, as usually it is the opposite way around. But Levi is incredibly noisy when he sleeps. I can hear him anywhere on the first floor through closed doors. But here I was just three feet away from him and I could hear him quietly breathing, no stridor or squeak. His monitors were reading 100 on his oxygen saturation telling me he was comfortable and safe.

My heart started beating faster as I thought that my prayers had been answered and that God had finally healed my youngest son. My heart was hoping.

After five minutes of me allowing myself to believe that his healing had come, Levi shifted and his squeaking hit full blast. In my heart I felt that hope fade yet again.

After feeling two heart twisting moments in the course of 10 minutes I started to ask why I do that to myself? Why do I continue to hope just to have those dreams squashed? And why do I do this over and over and over again? Shouldn’t we have accepted this life, and this brokenness by now?

Should I just give up on this trusting God thing?

But then I started to imagine a life without hope. A life without anticipating that tomorrow will be the day my boys are healed. Without that hope, I don’t know that I would have the drive to keep doing this day after day.

There is power in hope. There is a hidden strength and it become a fuel.

Romans 12:12 “Rejoice in hope, be patient in tribulation, be constant in prayer.”

Hope doesn’t always bring us the answers we want. But it changes the outlook of our circumstance. There is something so pleasing to God about a pure faith that continues to believe in the impossible. Oh how much joy it brings him when we place our hope, day after day, in Him and acknowledge that with a single thought He could make both of my children whole again.

But there is a reason He has said “not yet”. And when I choose to hope, it is my way of telling God “I know you can, so when you are ready…”

Maybe this will be the week.

Much love,

Leah