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:

1 Kings 19:11-13

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

God The Multiplier

Let me start off with a sweet video of the boys. Malachi loves to lay next to Levi, and lately Levi has been getting a bit grabby. I have been watching closely to make sure he won’t hurt Malachi but their encounters bring me so much joy:

The calendar. Ugh. I know I talk to you often about the love/hate relationship special needs parents have with the calendar, and this week has been no exception.

As we creep closer to Malachi’s big foot/hip surgery on November 20 I have started having to officially book his g-tube surgery so it can be done prior to. This week we spoke with the surgeon and have scheduled it for October 29. That means that Malachi will be having two relatively big surgeries within 3 weeks of each other, and that thought terrifies me.

June 2016 was the last surgery for Malachi- almost two and a half years ago! Praise the Lord that we have not needed anything surgically fixed recently for him!

With his imagination running wild these days I snagged him some Hulk hands to pretend with.

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We are still waiting to hear back about scheduling Levi’s second sleep study, which I am in no rush to do. In the meantime we are turning up his oxygen at night and naptime to keep him more comfortable. After the results from the next sleep study come in they want to do another scope procedure in Cincinnati around the month of December.

I hate seeing the word “surgery” on my calendar, and to see it three times makes my stomach churn. Not to mention all the pre-op and post-op appointments and bloodwork and multi-day hospital stays each of those will bring.

Malachi’s mysterious fevers are still come and go; he has another low grade one right now of 99.5 but it seems to be dropping quickly. It sounds like a conspiracy theory but it has happened the last four times he has been in the church nursery (he was the only kid in their all four times). I spoke with the neurosurgeon who said that if it were shunt related the fever would be consistent and stick around, so we are feeling more comfortable about that. He is still getting to sleep in the big bed with mommy and daddy most nights so I can keep a close watch on him, and he is still loving it.

Some sickness has been floating around the county so we decided to keep him home every day this week except for Friday when he has his physical therapy sessions. Some of his classmates and teachers had households with strep victims so we thought we would play it extra safe. He did get to play in his soccer game on Saturday and his excitement leading up to the day was so fun to see. It takes him a little while to grasp a new schedule change and this was his breakthrough week where he was excitedly anticipating the day.

We took our high school soccer team to a game at Lee University on Saturday night, and naturally the boys joined us. Levi wailed every time the crowd went wild and Malachi was so incredibly invested in the game. I sat with him and gave him the play by play of what was happening and he hung onto every word. Lots of giggles and laughter for him that night.

Both of the boys met with their new feeding therapist this week and I am so happy to report that I feel it will be a perfect fit! He is a Christian and believes in the same manner we do regarding Malachi’s quality of life and us wanting to make however many years he has on earth exceptionally fun. So if that boy wants to eat a half a bowl of queso at the Mexican restaurant (true story from Thursday by the way), then by golly we will let him! We want feeding to be fun and not torture for him.

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Our goals for the boys are so drastically different when it comes to eating by mouth. Levi is a trickier case as we have to make sure we aren’t sending any liquids down into his lungs. My goal for him is safe eating until a) God heals him, b) his vocal cords wake up, or c) he is old enough to verbalize how comfortable he is managing liquids. Our overarching goal for him is to get his g-tube permanently out.

Meeting with a new therapist or specialist is quite the task for a single one of my children, let alone both at the same time. I keep a summarized copy of their medical history with me at all times and use that to drive the conversation. Usually by the end of the conversations I have used enough medical terms and acronyms to somehow convince the person that I have a background in healthcare….definitely not the case! Just a momma who loves her boys. The medical histories portion alone took a solid hour to cover on Tuesday.

We will be adding feeding therapy sessions for each boy to our Tuesdays. Sweet, solitary Tuesday are now being overtaken by yet another therapy. In addition to our specialist appointments that means we have:

Monday- physical therapy for Levi

Tuesday- feeding therapy for both boys

Wednesday- horseback therapy for Malachi

Thursday- occupational therapy for Malachi

Friday- physical therapy for Malachi

This is a before and after of little Levi during a tickle attack from Malachi.

While we spent most of our week tucked away at the house, we did venture out with Jake to Home Depot on Monday. We trialed putting Levi in the carrier with all of his gear hanging off Malachi’s wheelchair which worked great until Levi decided to vomit. Obviously our rigged up system turned lots of head and started lots of conversations.

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Has God ever laid something on your heart? Pressed something on your mind and you just can’t think of anything else?

Lately my mind has been stuck on moms in the NICU. September is NICU Awareness Month, and after 243 days in the NICU it definitely is a topic that hits home. The heartbreak of being in that environment is something I wouldn’t wish on anyone. Days went by and it was all I could think about. I finally settled on turning those thoughts into action and resolved to buy some gift cards and hand write some encouraging cards for them to go into. I figured I could send them to the NICU with some of our nurse friends and they could pass one out to a mom who was having a rougher than normal day.

Then 6am Thursday rolled around and I was wide awake laying in bed with both boys sleeping in the room with me. I wanted so badly to sleep but I felt like God was telling me to get up and write. I tried to ignore it and go back to sleep, thinking I would just write it later but I continued to feel an urging so I got out my phone and typed out what was on my heart.

Later that afternoon I made a Facebook post with the writing, offering for anyone else that wanted to donate money towards a gift card to send money to my Paypal and I would handle the rest (you can read the post at the very bottom of this blog entry). I thought it might be nice to be able to donate 20-30 cards. So far we are up to 93 gift cards to make NICU moms feel special and loved!! How amazing is that!! If you have any interest in donating, our PayPal is: https://www.paypal.me/miraclesformalachi

It might take me a few weeks but I will be chipping away at the handwritten cards part of this project, praying that God gives me the words to write in each one and then gets that specific card into the hands of a mom who needs to hear them. I am excited to see where God is going to go with this one!

Okay, so why the story? This whole thing was just another reminder to me of the importance of listening and obeying God. We talked in Sunday School this morning about priorities and I explained how in our lives we no longer ask “Do we have time for this?” but instead we ask ourselves “Does God want us to do this?” When God calls us to do things we are seeing time and time again that he opens doors that have been bolted shut and gives us a strength that supersedes anything we could do on our own.

God is a multiplier. He takes what little we have and he makes it something BIG. Like the five loaves and two fish miracle from the New Testament, God can take the meager rations that we have and use them to spiritually feed thousands. But we have to offer him the fish and loaves. We have to be willing to give him all that we have left.

We see this played out in our lives on a daily basis. I should not have any energy with the amount of sleep I get each night. My mind has no opportunity to relax and reset. Yet God continues to press me towards tasks He has chosen me to do…and I have learned that if God is leading me to do something that I need to obey.

Yes, that means that when you look in from the outside at our crazy lives you will tell me that we are involved in too many things…coaching soccer teams, running an indoor soccer league, youth pastor, starting a children’s ministry (that’s this weeks new addition haha), and so much more…

But what you may not understand is that God has CALLED Jake and I to do each of those things. We don’t do they because we are bored, need the money, or feel qualified. We simply do them because we feel like they are each a ministry. God wants us to be involved in those things. Our job is to recognize God’s leading then sit back and watch him multiply it. Watch Him turn it into something special.

But how many opportunities do we miss when we don’t listen to God’s leading and follow it? So my challenge to you this week is to be sensitive to the things that God lays on your heart. Don’t dwell on them until you forget them….act immediately and with excitement and anticipation as you watch God work through them.

And one final laughable note…almost exactly one year ago I wrote a Facebook post about my pregnancy. At this stage, everything was looking wonderful and there were no issues with Levi at all. I was a few weeks away from giving birth and had done an update with a list of 10 things people may not know about my pregnancy. The list ended with this:

10) We believe firmly that God has BIG (and I mean HUGE) plans for Levi’s life. I can’t tell you what they are yet, but world- you better watch out because he will be moving some mountains just like his big brother.

Wow! That is all I know to say.

God bless,

Leah

Here is a copy of my lengthy Facebook post:

NICU Awareness. Anyone want to help bring a blessing to someone in need? Warning: Long Leah post up ahead haha…

Imagine unexpectedly leaving your home today and not going back for 4 months. And when you do return it is like a perfectly preserved time capsule of a person you used to know- but your journey has changed you beyond recognition both physically and emotionally. You see all of the hopes and dreams you envisioned for your pregnancy and unborn child and have to hold them up against the reality of the experience you have been given.

The NICU is a world I never knew existed until a was abruptly thrown into it. The NICU is a place of acronyms you have to google. A place with a smell you will never forget- not bad, but memorable. It is a place where you unknowingly memorize floor tiles after spending weeks watching your tears hit them. It is a place of isolation and loneliness. It’s a place where you learn how to read the faces of doctors, prepping your heart for the bad news they are about to deliver.

Between both of my boys I have spent 243 long days in the NICU…that calculates to 9 months. Those are days I get nauseous looking back on- but also know I wouldn’t have wanted to be any other place than fighting alongside my warriors boys, each with their own unique NICU journey. Malachi, born at 24 weeks without a heartbeat. Levi born healthy at 34 weeks with a rare diagnosis of bilateral vocal cord paralysis. Who would have ever imagined that my 34 weeker would outstay my 24 weeker by 3 weeks. The NICU world is full of surprises and a variety of babies and conditions.

The NICU is a place of heartbreak as you have to helplessly watch your children suffer. Moms of typical newborns hold their baby within minutes of him being born. NICU moms have to wait for permission to touch their child with a gloved finger. And in our case wait three weeks to hold that sweet baby for the first time, unable to move due to ventilator tubing but soaking in the opportunity to feel that 1lb 12oz miracle physically become a part of me again.

The NICU is a place where a mom doesn’t get to be a mom. A mom becomes an overseer of monitors and alarms, even though you have no clue what to do when one goes off. A NICU is a place of bad memories, like watching your son code and seeing them tirelessly fight to bring him back as they mechanically squeeze breaths of life back into him. It is watching your child’s head be tilted back at an unnatural angle as they shove yet another breathing tube down his throat. And then watching him cry from the pain but not being able to hear him due to that tube. It is truly a place of heartbreak for a mother.

But the NICU is also a place of miracles. A place where you literally get to see the impossible happen. You celebrate things you never even knew you should celebrate…the first poop, a PICC line being able to be taken out, an IV stick on the first attempt. The first audible noise your child makes. The celebration of simply surviving another surgery after spending hours in a room on your knees praying.

The NICU is also a special, one of a kind place. A place where you bond with strangers as you see the same pains and struggles written on their face. A place where you will meet some of the kindest and most caring nurses. These nurses become your only friends who “get” it, they become your child’s biggest cheerleader, they become your psychologist as you continue to process the emotions of what is transpiring. They look past your irrational moments and ugly crying because they know it is fueled by a mother’s love.

In the NICU you don’t get to be a mother very often. So you cling to any moment that allows you to feel like one. A diaper change every 3 hours, a quick glimpse at a tube free face when respiratory changes out the machines, suctioning out secretions from a tiny little mouth hoping to bring some relief to your warrior. All while whispering encouragement to your precious child that life is going to get so much better for him if he just keeps fighting.

One of the hardest moments for me was going out in public after having Malachi. No one knew that I was a new mom, after all I didn’t have a baby to show for it. But I remember the joy of going to the store the first time after having him and walking to the baby section. I BELONGED in this section. I HAD a baby to shop for. My baby was a fighter. And picking out a blanket for him that day was the best thing for my hurting mommy heart. I had 20 brand new blankets at home for him, but for some reason those blankets bought in preparation just didn’t seem special enough- or fitting for the situation. They were reminders of what should have been. I did the same thing for Levi and the healing that happens in that moment is indescribable. You feel needed…like no one else on earth knows which blanket, stuffed animal, outfit, or toy will bring YOUR baby comfort. But you do, because YOU are his MOTHER.

This year for NICU awareness day I want to provide that “mom moment” to others in the NICU and I thought I would extend the blessing opportunity to you. I will be purchasing gift cards to some stores close to our NICU in Chattanooga and writing out cards to put each one into. When a mom is having a harder than normal day- a day when the emotions get too much to bear- I want the nurses to have a stack of these blessings to draw from. A chance for a mom to get away from the NICU and do a Mom thing. An excuse for her to breathe some fresh air guilt free as she shops for her baby.

So will you join me in this project? I will do all the hard work for you, just PayPal whatever amount you would like to contribute! And if you don’t know me personally be assured that every penny you send will be used as promised. What an easy way to send a big blessing to a fragile mom.

Feel free to share this post!

Send all contributions to our PayPal: https://paypal.me/miraclesformalachi
If you would like to mail a contribution just send me a private message for my address. And thank you for helping me accomplish something that God has laid on my heart.

 

 

 

Watching The Angels

What an up and down week we have had. Malachi suddenly started running a fever on Wednesday evening so we started to go through the checklist…could it be pneumonia, a shunt malfunction, something viral, did he simply get overheated? Do we risk taking him to the doctor where he could possibly catch something worse? Do we just wait it out and see what happens?

We went with the watch and wait method. He had been at the barn for horse therapy earlier that afternoon and it was a hot day. With the help of some Motrin his fever was gone by 10pm that night and we were feeling pretty confident it was just an overheating/brain issue. As he always does, his temperature continued to drop the opposite direction so we worked to stabilize it and he got to sleep in the big bed with mommy and daddy and watch cartoons that night (a super special treat).

To play it safe I kept him home from school the rest of the week, but he seemed back to normal. Tonight at church he vomited out of the blue and started running a fever again. We will be watching him very closely, as both of those can be signs of a shunt malfunction. If the fever is still there by morning we will likely need to take him in for imaging.

Even with the threat of a potential emergency brain surgery (which we aren’t even confident is needed) I am working myself into a frenzy trying to process how we will manage both boys. We would need to keep Levi away from the hospital and germs, but Malachi undergoing surgery, particularly on his brain, is a tough thing for momma to go through alone. It is easy to forget how complicated things truly are when we are at home and everyone is doing so well. We will just continue to pray that this is a brain regulation issue and no intervention is needed.

Levi is being his same wiggly self. Our home looks like a Babies-R-Us as we have devices, seats, jumpers, bouncers, and swings everywhere. When I set him on the ground to roll around he ends up with the cords wrapped around his neck and pulling on his g-tube; when I am feeding Malachi and cant get to Levi quickly this can become dangerous so I rotate him through his gear. He still gets plenty of time on the ground but only when we can closely supervise him.

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Levi has mastered the “throwing things” cause and effect game and LOVES it. He also has to see mommy at all times. He recognizes his name and will turn to you when you say it.

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Malachi got a new dinosaur toy that wraps around his arm and it has been a HUGE hit. He uses his imagination to pretend like it is biting us and will ROAR. It is fun to see him try to engage play with Levi. I took a video for you all:

This week the boys are scheduled to meet with their new feeding therapist. I am very eager and excited to see how this will go. We need some forward progress with both boys and I need just the right person to help me tackle it.

Tonight’s verse comes from Matthew 5 which is where Jesus gives his sermon on the mount. If you get time this week you should read through the first 10 verses.

When I read scriptures I have read many times before, I always try to look with fresh eyes and be open to anything that God wants to highlight for me. As I read my mind started processing some of the words and led to some further studying.

Here are a few of the questions I struggled through:

-“Blessed are the poor in spirit, for theirs is the kingdom of heaven.” (verse 3)    I found myself what it meant to be poor in spirit. It almost sounds like a negative thing, like someone who isn’t close to God, or spiritually bankrupt. But after spending some time reading commentaries I understand that it means being humble and acknowledging our constant need for God.

-“Blessed are those who hunger and thirst for righteousness, for they will be filled.” (verse 6)   I started to think about what it means to hunger and thirst for righteousness. If you look at the word “righteous” in the New Testament it comes from a greek word (“dikaios”) which means observing diving laws or upright, faultless, innocent, and guiltless. Can we ever achieve the title of “righteous” with that definition? The Bible uses that adjective with several people: Job, Abraham, Noah, David. How did these sinful people earn such a great compliment from God?

While I know that none of us can remain sinless, I do know that it brings God joy when we hunger and thirst to live a lifestyle that honors Him. He sees our hearts and our motives. Righteousness should always be something we strive for, even though we know we will mess up along the way.

-“Blessed are the pure in heart, for they will see God.” (verse 8)    This one made me stop and think. When I think of a person that is pure in heart the first thing that comes to mind is my Malachi. What a pure little heart he has, and Jake and I are confident that he will spend eternity with God- probably running like a wild man on his perfect little legs.

But I do want to share something really unique and special with you….

And in doing so, I recognize that some of you may think I am crazy haha. I am a spiritual person, but what happened this week was a new one for me.

This week Malachi has been staying up way later than normal. Jake has to work so he and Levi go to bed and Malachi and I stay in the living room, talking and playing while I wait for him to tire out. Earlier this week I had a discussion with him and I told him if there was a room full of little boys and I could pick any of them to be my son, I would choose him again and again. We talked about how special and unique he was and how God designed Him beautifully. Malachi was eating up the conversation and signing “more” so I kept the talk going.

We talked about how much joy he brought his mommy and daddy, and how he was being such a great example to baby Levi on how to make good decisions. I talked to him about how much God loves him and how he points people to Him. He grinned his sweet little grin at me, kissed me on the cheek, and gave me a big hug…reminding me that his sweet little brain understands almost everything I tell him.

We snuggled chest to chest on the couch and he started to drift towards sleep. Then suddenly he started giggling. And BIG TIME. Usually I can pinpoint what is making him giggle, but this time it was just so random. Then he sat upright, pushing himself off of my chest and looked straight behind me.

Malachi has corticol visual impairment so he is legally blind. He really struggles to see things, but he locked his eyes onto something and tracked it. He was so focused on something and whatever it was was continuing to make him laugh hysterically. My blood ran cold as the whole thing creeped me out a bit in a cool way. There was clearly something else in the room- he saw it and I felt it.

We have always felt that Malachi sees angels and I have no doubt that he saw one that evening. He sat up and tracked that angel with his eyes for 18 minutes straight with a strength and a visual ability that he has never had before…especially for that length of time.

I kept laughing at myself for getting freaked out (which happened multiple times) as I realized that God knows I can’t handle seeing an angel. I know it sounds silly and irrational, but after the first few minutes I started wondering if I this was a sign I was about to lose Malachi.

Malachi finally calmed down and started to snuggle again. We were a few minutes away from him being asleep and it happened again. He sat bolt upright, giggled uncontrollably, and tracked it again for another 10 minutes. At this point I was laughing as I watched the sheer joy on his face. I don’t know what that angel was doing, but Malachi thought he sure was doing some funny stuff.

And yes, I still got the chills and slightly freaked out the second time too haha.

Malachi has acted this way once before when we went to a church service in Ohio. We were confident that evening too that he was watching angels. His whole demeanor and body changes. And the eyes tracking is just incredible. Undeniable.

When he finally drifted off to sleep after the second tracking I thanked God for sending His angels into Malachi’s world. I thought about all of the dark times Malachi has gone through. All of the scary surgeries, hospital stays, loneliness in his trapped world. Knowing that God has been sending Malachi so many joyful, comforting moments made me smile.

Blessed are the pure in heart, for they will see God. While I believe that this verse is talking about the future life in Heaven that Malachi will have, I also am thankful that God’s face shines on my sweet boy during his time here on earth.

Please be in prayer for Malachi as we sort out the fever mystery. He and I are headed to bed right now and with fever reducers he is hanging out at 99.1. Usually if it is just a temperature regulation/brain issue it drops much lower than that so now I am beginning to lean toward sickness or a shunt malfunction. Pray for Jake and I to have wisdom.

And please continue to pray for Levi’s miracle too. That those vocal cords suddenly start moving, like nothing was ever wrong.

Much love,

Leah