The Crazy Sock Mom

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

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

“What kind of mom would I have been?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But some days are very hard for this weary momma.

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

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

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

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

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

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

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

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

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

Faith over fear.

Love,

Leah

 

 

 

Brotherly Love

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is the video:

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

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

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

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

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

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

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

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

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

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

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

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

My prayer this week is that you encounter God.

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

God bless,

Leah

 

Unstained

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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

We are going to try the aquarium next time around!

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

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

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

 

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

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

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

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

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

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

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

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

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

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

Am I giving enough of an effort?

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

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

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

Much love,

Leah

 

Fed By Ravens

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now on to my devotional thought for the evening….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Leah

 

 

 

 

 

 

 

Hope

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

 

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

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

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

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

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

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

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

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

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

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

Here is a super sweet video for you of Levi:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Should I just give up on this trusting God thing?

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

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

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

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

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

Maybe this will be the week.

Much love,

Leah

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

 

Endure

Things I am increasingly thankful for in my life:

  • our diaper chute; I thought it was a pretty clever idea but who knew it would be such a game changer. My world is full of poo.
  • Amazon prime; I literally ordered mayonnaise on Amazon this week. Weird? Absolutely. But so incredibly helpful (Amazon, not the mayo).
  • Little House On The Prairie. It is boring enough that Malachi will go to sleep during our 3am parties, yet fascinating enough to keep me awake until that happens.
  • a dry sink; see bullet point #1
  • Jake.

Levi is growing and changing so much these days. He is now 9 months old and 16 pounds. We have been working hard on sitting independently and while we are nowhere near being able to do it yet, he still looks so proper in his attempts. Sometimes I catch myself worrying about the milestones that we have yet to reach, and then I remind myself that if I spent the first 4.5 months strapped in a hospital bed my muscles might be a little weaker than normal too. I still believe fully that God will heal Levi’s brain and vocal cords. And along with that healing, we will see these milestones!

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Gah I love him. I love them both so much. Malachi and Levi are starting to interact more with each other and seeing them pester one another fills us with joy. Levi grabs Malachi’s feet and chews on them while Malachi takes his fist and bonks Levi on the head.

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Tuesday was our wildest appointment day as we headed to Chattanooga for an early morning appointment. The night before big days like these I do the math- take the appointment time minus 10 minutes to check in, minus 15 minutes to find parking and wait on elevators, minus 10 minutes to unload all of my gear and children, minus rush hour traffic allotment, minus the one hour drive to get there, minus 15 minutes to load up the boys into the car, then from there I decide if it is reasonable to actually plan on a shower before we hit the road. 9 out of 10 times that is a big fat nope. So I guess I need to add “ball-caps” to the thankful list above.

We made it to the hospital, turning heads as we went. I am still trying to come up with a good response to the one liners that are zinged our way. Tuesday’s was from a man in his 60s “Think you can handle one more?” To which I stopped and replied “Sure, hop on!” Another one of my Leah awkward moments I am so talented at creating. He laughed awkwardly and kept walking.

We made it up to the surgeons office to sign in and I heard a thump. Confused, I looked at the ground to find that a very important piece of Malachi’s wheelchair had broken off leaving a jagged spike next to his rib cage. Wonderful.

We met with Malachi’s surgeon and talked about the possibility of placing a g-tube. There are three ways they can do these- endoscopically, laparoscopically, or open incision. Malachi has had several abdomen surgeries making this whole process much more complicated- hernia repairs with bowel loops, stomach perforations, penrose drains, shunt tubing placement, and more. Each time they went in more scar tissue formed and the probability of an easy g-tube placement lessened.

At this point endoscopically is out of the question, and it will be a stretch to place it laparoscopically (sending in a camera through a small incision first followed by tools) but we would like to try before they go to the open incision. There are risks that they could puncture the bowels trying to get the tools and camera over to the g-tube site but all we can do is cover him in prayer and hold our breath….something we have practice in.

This same surgeon has done all of Malachi’s other abdominal surgeries and we trust him immensely to be conservative when he needs to be. It helps knowing and trusting the man in charge of the decision making. We are waiting on a call back with a surgery date but our goal is to do it before his November foot/hip surgery.

As we left the surgeon’s office I made a quick phone call to the wheelchair repair shop to see if they could take a look at Malachi’s chair and off we went. Thankfully they were able to fix it within the hour!

I had promised Malachi early that morning that he could go to school after we finished our appointments, not anticipating his wheelchair breaking and other random surprises. When we got back into the car I asked him “Malachi do you want to stay home with mommy today?” to which he replied NO. I then asked him “Malachi, do you want to go to school?” and he did his YES sign. Alright buddy- school it is.

I always want him to know that he is heard, even when he cannot speak.

But now we were past lunchtime and he still hadn’t had a solid meal. I found a Cracker Barrel on the route home and in we went to refuel Malachi and mom. We like Cracker Barrel because we are a rowdy bunch and it is nice and loud. To feed Malachi takes about 45 minutes and he is just too large now to do it in the car. I quietly asked the hostess to stick us in a corner somewhere and she said she had one corner table left and it was JUST the table for us. Then she took two steps into the dining room and led us to the table right behind the hostess station. Not ideal but we will make it work.

We settled in but being right next to the entrance/exit of the dining room we got loooooots of comments, pity looks, and unwanted attention. One employee as we left loudly said “Oh my God, is she by herself with both of them!” These moments are so hard for me. I want to be invisible. I crave normal. But our life is “fish tank” with lots of outsiders looking in when we go into public settings.

But then I remember that maybe me having to care so intensely for my children is the “Jesus” that someone needs to see that day. Maybe someone needs to be reminded of the purity of love that exists in a Malachi smile. Or maybe me pushing my comfort zone will encourage others to do the same. To hide my boys and our life from the world would be a huge mistake. Even without speaking a word, their lives and unbreakable spirits are incredible.

In the end Malachi got his food and off to school he went- for an hour and a half, but still momma made good on her promise!

Mixed into our 7 appointments this week we also had youth pastor duties and soccer games/practices. In case you weren’t aware, Tennessee is HOT in August! Mid 90s hot. So for soccer games we have rigged up a nice tent for the boys and bring a generator and a high powered fan. They both really enjoy being outside in their bungalow and watching the game (and Mom and Dad in coaching action) with grandma.

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I am slowly trying to reclaim some of my out of control life. This is the absolute heaviest I have ever been. I am confident that the stress, lack of sleep, and inability to eat normal mealtimes has something to do with it, but nevertheless it is my job to take care of my body and make good choices. I have been trying to make time to run on the treadmill in our basement and have set up a nice little play station for the boys down there. We also have a local gym that is tiny but perfect for a 30 minute workout while Malachi is in school.  Baby steps.

Malachi had another exciting Saturday in his new soccer league! He was all smiles when we told him it was soccer day. And the smile on his face as he wheels around the court is heartwarming.

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Mondays are turning out to be pretty pleasant days for us. Malachi has started going to school for about 3 hours a day and I am able to take Levi to his therapies alone. It feels so odd to just have to one child to worry about…almost like I am forgetting something…such a weird feeling.

This Monday after Levi’s physical therapy I decided to run into the grocery for a handful of things we desperately needed. As I pushed Levi in his stroller we passed a nice elderly man who pointed at Levi and said “Wow, you really have your hands full!” I just laughed and smiled and said “I sure do!”. It seems self-seeking to one up his thought with a “This is nothing! I also have a special needs 5 year old in a wheelchair!”

Perspective is everything. And this world isn’t a competition of who has the hardest life. But sometimes our human minds play that silly game.

Every one of you has your own struggles, your own fears, your own unique and winding paths. Like the parable of the talents found in Matthew 25, each of us is entrusted by God with things “each according to his ability.”

But what happens when God sees more in your ability than you see within yourself?

1 Corinthians 10:13b says ” And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”

I keep clinging to the word “endure” in that verse. What exactly does endure mean? I did what every American does and went to Google and here is what it gave me:

Endure= suffer something painful and difficult patiently

Ugh that doesn’t sound pleasant.

There are so many times in my life that I have been flabbergasted by God as I think to myself  “God thinks I can handle this, but I truly, sincerely don’t think that I can.” But I can attest to the fact that He has always given me strength and power to ENDURE it. To suffer something painful patiently while I trust in His timing and plan.

He hasn’t given me a painless life. My heart is bruised beyond recognition. I don’t recognize myself in the mirror. I am a product of enduring. It breaks you down and shows your ugliness. It shatters your pride. It takes you to your weary and skinned knees.

But to live a life of enduring has brought me closer to God than any comfort this world has to offer.

But that “way out” that is referenced in 1 Corinthians IS GOD! He gives His strength to the weary, He increases the power of the weak. He renews our strength.

With God to run to we can not only endure, but we can soar on wings like eagles. We can run and not grow weary.

So my challenge to you this week is to change your perspective. It is easy to play the game the world likes to play…”listen to how rough I have it.” I could have given that old man in the grocery store an earful. But instead let’s be proud of our bruises, of our scars, of our journey. Because it is those very things that show that we have ENDURED. And we have reached the other side of something so dark and painful with the help of Christ.

God bless,

Leah

 

Hummingbirds

We are fully recovered from our exciting week last week with our out of town family. I thought I would share a few sweet pictures from their visit.

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Malachi in particular loved sharing his house, toys, and brother with my family. Each morning he woke up so excited to see them again! As they left on Tuesday and we said our goodbyes I made sure to explain to him that they were going back to their home in Ohio. We waved goodbye from the driveway and came back into the house. After about 5 minutes, Malachi realized that they were truly gone and he started to cry.

I snatched him up and I let him cry on my shoulder as we talked about how much fun the week had been. He is such a sweet little boy. And he understands SO MUCH.

Flashing back to our last Cincinnati visit, the ENT and pulmonologist came up with a list of three things that needed to happen for Levi to continue avoiding the trach.

  1. Grow well
  2. Pass a sleep study
  3. Get sick safely

It was predicted that when Levi got his first respiratory infection that he would be in the ICU and back on the ventilator. His vocal cords are already close together, making it hard to breathe so if they swell larger you can imagine the impact that could have.

As I mentioned last week, Jake came down with strep and a viral infection and was sent to a hotel and a family members house from Friday to Tuesday night. I cleaned the house like a crazy lady, sanitizing and laundering everything I could but when Tuesday night rolled around I could tell that Levi was coming down with something. He cried and fussed all night long, clearly in pain. Tylenol helped but as the day went on I could tell that he had come down with a cold and a sore throat.

I was so anxious and kept him hooked to his pulse oximeter to measure his oxygen saturation. He did pretty well but had enough dips to warrant me turning up his oxygen to 1/2 liter (from 1/8). He is still having a few coughing fits here and there but sailed through his first sickness without an ICU stay! PRAISE THE LORD!

While I dealt with sick Levi I just assumed that Malachi would come down with the same thing. Malachi’s immune system is so compromised and he is very susceptible to sickness. When he gets sick we have to take him to the hospital sometimes daily (an hour there and an hour back) for chest x-rays as he develops pneumonia easily.

But as the days went on, Malachi was his happy and silly self. He figured out that if he screamed loudly that brother would wake up crying so that became his game of choice, giggling after each successful attempt. Since he was doing great I still took Malachi to his horse therapy Wednesday and even sent him to school for two hours on Thursday.

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Friday morning he woke up with a runny nose so I assumed he was officially catching the viral bug but with some allergy meds that went away. Just to play it safe I kept him home from school.

Here is a photo from his first big day in Kindergarten; he wasn’t in a picture taking mood so this is the best I could do:

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So let’s talk about the big meeting with Levi’s pulmonologist on Tuesday morning.

We met to talk about the results of the sleep study, and in my Leah way I tried desperately to read his body language as he entered the room. Unfortunately for me, this doc is hard to read so I started to get anxious.

He explained that he was hoping for some black and white answers but instead we got even more gray area. He said he had been talking at length via email with the Cincinnati ENT and pulmonoligst and they had come up with a plan. This part makes me a little anxious as I have always been the middle man between the two offices. I like the concept of each of them forming an opinion apart from the other and allowing me to hear all sides. It was kind of my way of getting a second opinion.

Good news: one of the biggest concerns from all doctors involved was Levi’s carbon dioxide retention. The sleep study showed that he is exchanging gases well when he sleeps and his CO2 is definitely in the safe range. Levi also was not having any severe apnea (stop breathing) spells.

Bad-ish news: Levi’s hypopnea (short and shallow breathing) is causing brain arousal moments at night which will keep him from getting quality sleep. This can affect his brain development and growth so it is concerning.

Take away: all docs want to do another sleep study and this time they will INCREASE his oxygen while he sleeps (up to 2 liters), hoping to find a happy number that will allow his brain to relax more.

Ugh. Another sleep study. The thought of it makes me nauseous. Just Ugh.

We are waiting on the scheduling department to call us with a time and date. Cincinnati mentioned us coming up there to do the study followed by another procedure to see how things look, but if we can avoid a trip there we will try. It would take them several days to read the results of the study, then several more to get us into the operating room and that is a complicated life for us Carrolls.

When the pulmonologist got ready to leave he did something he has never done….

He superstitiously knocked on the wall behind him and said very quietly through clenched teeth: “I think we still may be able to avoid the trach.” He still seems a little unsure but him verbally telling me that it was still a possibility to avoid it gave me some wind beneath my wings.

This week we will meet with Malachi’s surgeon to talk about his g-tube. It is another appointment that makes me sick to my stomach. I hate the idea but know it is time, especially with his big upcoming hip and foot surgery.

Back to some happy thoughts…

Malachi played in his first soccer game on Saturday and had a blast!

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He is always cautious and quirky his first time trying something new, and this was no exception. But at halftime when I asked him if he wanted to keep playing he exuberantly signed yes. Ten minutes later he told us with his signs that he was done and sat out for a bit. It is an overwhelming environment with all the noise and chaos, but he will adjust over the next few weeks. When I talked to him tonight about playing next week he giggled and signed YES.

Here is a fun video for you:

I have been a little emotionally fragile all week as I have been dealing with lots of sleepless nights, not a lot of help from Jake as he is still recovering, and a rapidly moving life with lots of places to be with lots of people counting on me. When I get into this fragile mode I know I am due for a pity party with lots of tears. It’s coming soon.

Tonight I attended a women’s event with the ladies from my church. It was a casual gathering at someone’s house but as I sat alone without any children in sight I started to get tight chested and struggled to breathe. I knew that I was physically okay but mentally I was absolutely freaking out. I was able to talk myself through it before causing a scene but that is the closest I have ever been to a panic attack, if that is even what it was. I am just not used to being without the boys and having that burden of responsibility lingering in my thoughts.

My control freak side has been in overdrive today adding to the buildup. For example, my sweet husband got Malachi ready for church this morning but I just couldn’t handle the mint green shirt, neon orange bib with sharks, and bright red socks. Nope, nope, and nope.

But more time at home this week has given me more time to create thoughts and dwell on them. This week’s thought focus has been on nature.

Recently I put up a hummingbird feeder right outside my living room window. Yes, random, I know. But prior to hanging the feeder I would be sitting on the couch with a kid and a hummingbird would appear in the window, staring directly at us. It was so odd to me and became so frequent that I figured a feeder would get some attention.

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And it most definitely drew a crowd within an hour of me hanging it up. I have been utterly fascinated by them as I watch their behavior. I watched as their wings moved so fast you couldn’t see them and I wondered how they never tire. I watched them fly up to the feeder for a quick sip, anxiously glancing around them each time, then seconds later darting off back into the sky. What an exhausting life that must be.

Then one day it hit me…I AM A HUMMINGBIRD! I live in a world where it is never safe to stop flapping my wings. I can never relax, never shut off, never rejuvenate. If there are moments to take that sip of water I pounce on them, but all while looking around anxiously waiting for something bad to happen because I let down my guard.

It is exhausting! Each morning Malachi wakes me up around 3am by having a seizure. I hear him over the baby monitor and rush in to get him upright before he vomits and aspirates it into his lungs. I take him into the living room to try to help him burp instead of vomit (the trigger for the seizure) all while listening closely to Levi’s alarms to make sure he doesn’t have a breathing episode that requires my attention. After an hour or two up with Malachi he ends up in the bed with me- I have to carefully roll him onto his side in such a way that his already dislocated hips won’t hurt and he can’t smother himself on the pillow. I use my face to prop his face in a safe place and I use my knee in between his knees to keep his legs and hips comfortable. He will usually sleep like this for another hour and a half, but that is never guaranteed- some nights last week I got a total of 3 hours sleep, others around 5-6.

When we wake up for the day I have to administer 6 doses of medications to the boys, prime and setup a new feeding pump bag for Levi, change medical tape and gauze, change diapers, change outfits, and take an hour to feed Malachi. It is a constant flurry of action. If I want to try to shower I have to take 5 trips into the bathroom, 3 with equipment and 2 with each boy. Then repeat the process to take them back out.

Then getting them into the car requires packed coolers, feeding pump bags with ice packs, emergency bags, oxygen tanks, gear, and at least three trips to get everyone and everything into the car.

I am a hummingbird y’all.

And as I went down this rabbit trail of the hummingbird being my spirit animal of sorts, I started thinking about the purpose of the hummingbird. Why did God create them? What unique and individual job do they do that another species of bird could not fulfill?

Then that led me to other things in nature, like butterflies and sloths. What in the world do those things do?

I started thinking about all of the odd things in nature that God saw fit to create…things that don’t seem to serve a single purpose aside from the fact they are pretty cool to look at. Things that you and I look at and think WHY?

And then it hit me…

My Malachi is one of those “things”. He is one of those children that will never become a “contributing member of society” in earthly terms. He will in fact deplete lots of money and resources during his time here on earth. But OH MY what a purpose he serves.

Hummingbirds, butterflies, sloths, bees, spiders…they all serve a unique and special purpose. We have learned over the years through scientific studies that without these things our ecosystem changes. Even if their purpose is a tiny and minute one, it still plays a huge part in the big picture of nature. God knew exactly what he was doing when he designed and created each one.

When we look at kids like Malachi we find ourselves digging to come up with their “purpose”. But like the little things in nature, each of these beautifully unique individuals brings something to this world that you couldn’t get any other way.

In what other ways do you get to see firsthand a love that is unconditional and limitless? In what other ways are we given an opportunity to see such a pure and innocent spirit? Malachi reminds us of so many things we often forget…things we take for granted.

Malachi’s life also gives you and I the rare chance to practice selflessness. To take care of another person’s needs, and to gain a new perspective of the things we have to be thankful for. He reminds us of God’s goodness, God’s mercy. His blessings and how he can make beauty from ashes.

While Malachi may not be able to physically do much in this life, his purpose is monumental.

Malachi’s life is a reflection of Christ. In him we see those characteristics we are all called by God to show to others…love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control.

Malachi is here to teach us. And that is a pretty special purpose.

Sometimes when we hummingbird our way through life we forget to rest every now and then to note the beauty of our creation. The detail that God took in creating every unique aspect of each of us. And we forget that God has a calling on each of our lives.

There is something that each of us is MEANT to do in this world. There is something that cannot and will not function to its fullest potential without our presence. What are you here for? What special job did God design for you to do in your time here on earth?

You need to know that these blogs are written in the middle of the night, most of the time when I am utterly exhausted. I still feel called by God to write them each week, but I always laugh when I read them back. I can already see myself laughing tomorrow as I realize that I wrote about sloths. Why in the world that one came to mind is a mystery.

The verse I want to share is completely unrelated to my nature ramblings, but is one that I enjoyed reading again this week. I have a little green Bible that belonged to my grandpa who passed away in 2013. I love looking through the margins and seeing where he meticulously made marks with his pencil, noting things that stuck out to him. The Bible is the Message translation, so I don’t use it too often for studying but I do like how it worded this scripture.

Colossians 3:1-2 “So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ- that is where the action is. See things from His perspective.”

Please pray for the boys this week as we tackle a list of appointments. Pray that Levi continues to heal and that his vocal cords suddenly awaken. Pray that Malachi’s ligaments and tendons stop receiving wrong messages from his brain and start to loosen back to normal. Pray that his seizures stop and that he can be comfortable and at peace throughout his day. Pray that both of the boys receive supernatural healings and that Jake and I are each given an extra dose of supernatural wisdom in knowing how to care for such precious boys.

And pray that they can sleep. That God can allow each of our hummingbird wings to stop moving long enough for healing and brain growth.

Thank you for choosing to be a part of our journey.

God bless,

Leah

When Germs Attack

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love,

Leah