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.

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

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.

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.

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.

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….

1 Kings 17

² Then the word of the Lord came to Elijah: ³ “Leave here, turn eastward and hide in the Kerith Ravine, east of the Jordan. ⁴ You will drink from the brook, and I have directed the ravens to supply you with food there.”

⁵ So he did what the Lord had told him. He went to the Kerith Ravine, east of the Jordan, and stayed there. ⁶ 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:

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

 

 

 

 

 

 

 

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.

 

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.

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:

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!?

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

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.

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.

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.

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.

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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.

 

 

 

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.

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.

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