Glorify

We made it back from South Carolina on Wednesday evening and life went back to its normal chaos. Overall the boys did really well at camp! It helped that we had lots of chaperones and teens eager and willing to help!

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And don’t be too freaked out…Jake and his friend Tanner look eerily alike when they wear their matching soccer hats haha.

 

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Like I mentioned last week, Jake stayed with the teens at camp and the boys and I stayed in a rental house about 15 miles from the camp. The house couldn’t have been more suited to our accessibility needs and made life so much easier than a hotel would have been.

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Having my two nurse friends come along was such an incredible gift. We would spend all day at the camp and leave around dinnertime. Every night I would leave Levi with them at the house and drive back to camp with Malachi to hang out with the church kids until midnight or even 2am.

Malachi is a social butterfly so he fluttered from person to person, just happy to be around so many fun people.

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Here is a sweet Malachi giggle video for you:

And Levi learned some tricks and games from the big kids.

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Here is a Levi giggle video:

Levi took lots of naps throughout the week, and when you are on the go you just sleep wherever you can.

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We spent in time to spend the fourth of July at the house, enjoying being home in our own comfortable environment. I floated the river with a friend, something I don’t think I have done since before Levi’s pregnancy over 2.5 years ago….which means I haven’t gotten some serious sun in a long time either. I sheepishly decided to not apply sunscreen and definitely regretted it on the 2.5 hour float. And when you are floating in a tube only one side of your body gets the rays, so I am looking quite ridiculous these days. Oops!

This weekend we had some friends from Ohio come to visit with their two young daughters. We laughed all weekend at how enamored Levi was with the girls, following them around and trying to mimic the things that they were doing.

Spending time around other kids can always turn into a comparison game for me, as I see the things that a nine month old can do but Levi has yet to achieve. Sometimes my mind likes to pretend that he is quickly catching up on milestones, but the reality is that he moves at his own Levi pace. I have to constantly remind myself to be content with his pace as I tend to start panicking a bit.

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We took our friends to the river down the road so their daughters could play in the water. River water is a no-go for children with g-tubes because of the bacteria so Jake took turns taking the boys out into the water to put their toes in.

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Levi went first and Malachi and I sat in the shade together. When Levi and daddy walked away Malachi started sobbing. He didn’t understand that they were taking turns and thought that Levi was getting to swim and he wasn’t. I explained to him that no one was swimming in the river, and that the water was too shallow for ANYONE to swim. I also explained that it would be his turn next, but he was so sad with big tears rolling down his face.

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When it was Malachi’s turn he was beaming with joy and loved the cold water on his toes.

It is always so encouraging to see him react with typical emotions to things. Early on in his life he would respond to pain with laughter and seeing him not quite “get” what was going on around him was hard for us to see. But lately he has been responding so appropriately to situations and it has been a wonderful reminder of how far he has come.

It is so wonderful to see the sweet six year old boy in that beautifully broken brain.

When youth camp week rolls around each year I hear a lot of comments about how crazy Jake and I are to tackle so many roles, especially with our medical kids. People make comments about our busy schedule and how tired we always are (which is very true). And sometimes I find myself contemplating their suggestions to scale things back a bit and to focus more on ourselves and our little family.

But then I am reminded that I am not on earth for me. I am here to bring glory to God.

Matthew 5:14-16 says “You are the light of the world. A city that is set on a hill cannot be hidden. Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house. Let your light so shine before men, that they may see your good works and glorify your Father in heaven.”

We aren’t called by God to focus on “us”. We aren’t called to get more “me time”. We are called to shine our light to THE WORLD! That is what brings God glory.

When we allow our focus to shift towards ourselves we allow our priorities to change. Yes, being youth directors at our church can be so tough, especially during camp week each year. I could stay at home and send Jake alone and be completely justified in doing so. But instead I choose to go and pour as much of my light into these kids, knowing that it brings glory to God. And in turn, watching their faith grow draws me closer to God.

I have had this on my heart for awhile and yesterday a friend posted a quote from Tony Evans that reiterated the message:

“You exist for God. That is why you were created. You were not made just to get a good job, to live happily ever after, to get married, and to have kids. Those you call blessings and gifts. You were created to bring God glory and to accomplish His purposes on earth. That’s why you will find no rest in life until you find rest in Him.”

Sacrifice is something we naturally tend to turn from. It is painful, uncomfortable, and unnatural. But when you remember that your sacrifices allow God to be the focus then it doesn’t hurt at all. Instead it refreshes your soul in an indescribable way.

Every day I have to ask myself if my plans will bring glory to God. Many of them don’t naturally do that so I have to make a conscious effort to find a way to bring Him glory. Sometimes that means offering an undeserved kind word to someone. Sometimes that means opening the door and letting someone get in the line in front of me. Sometimes it means getting up with Malachi when Jake needs the extra sleep. Sometimes it means picking up trash on the side of the road. Every time it involves me putting someone else above myself.

God sees our hearts and he sees our intentions. And even when we aren’t shining a light for all to see, He sees our hearts. And the motives of our hearts are what truly bring Him glory.

I feel like I am rambling so I am going to wrap it up for tonight! Please be in prayer for the boys, that we stay healthy the rest of the month leading up to our week in Cincinnati. As we get closer and closer to that trip I get more excited to hear the report from the doctors about Levi’s airway. He is sleeping without oxygen right now and staying at very safe levels which is a praise. I would love to hear them say that he has been made whole!

God bless,

Leah

 

 

On the Road Again

On Saturday we made the drive with our youth group to a camp in South Carolina! Jake is staying at camp with the teens and I am at a rental house with the boys. I have two friends here to help which is a game changer!

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Every year I get anxious leading up to camp, as the devil always seems to find a way to attack our family to keep us from going. I was feeling like we were in the clear until Friday night when Malachi started having some major seizures. He had 5 big ones right in a row, each lasting about a minute. They scared him (and us) so he was uncontrollably sobbing after and during each one…and that is absolutely heartbreaking to witness.

We started through the checklist of what it could be- could it be just a simple ear infection or something complicated like a shunt malfunction that requires emergency brain surgery? Sometimes we can get Malachi to pinpoint what is hurting him but this time the pain was too intense to even stay calm enough for him to communicate.

I will spare you the details of all of the medical interventions we tried but one of them must have worked because he finally calmed down enough to fall asleep. Those seizures take so much out of his little body.

I don’t know if any of you have a unique life like we do, but when you live it every day it just seems so ordinary. The medical tasks have just ingrained themselves into our routines to the point that we don’t think they are out of the norm. But as I packed our bags for the trip, making sure to pack all of the medical supplies we would need I couldn’t help but realize how complicated our days can be.

When we travel far from home we have to think of every possible scenario and plan for the worst. Updated medical summaries, oxygen tanks and cannulas, pulse oximeter machine and sensors, extra g-tubes and extensions, special seating for Malachi, not to mention all of the medications. I spent the two weeks leading up to our trip calling and coordinating deliveries for formulas, diapers, and feeding bags as well as all of their medication refills.

Medications for most people involve a standard Walgreens pharmacy, but for the boys we have to use four different pharmacies and have some of their specialty medications shipped. Both of the boys are on special formulas that are not sold in stores. There has to be a whole lot of planning before we can commit to out of town adventures.

Adding to the chaos is sweet baby Levi and his antibiotics for his double ear infection. The antibiotic we went with this round had to be stronger than the last and has upset his stomach severely. I will avoid painting you a picture, but we had to pack a whole lot of extra outfits (in dark colors haha) for Levi and momma.

 

Leading up to camp we tackled our regular appointments…

Malachi went to swim therapy.

Levi rocked his physical therapy session, standing independently for a few seconds!

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Both boys went to feeding therapy. Levi is improving by leaps and bounds! In this photo he is signing for “more noodles”.

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And Malachi went to hippotherapy and got to ride one of his favorite horses, Chica. The summer heat has officially arrived here in southeast Tennessee and Malachi shuts down easily. He was wiped out after just 15 minutes.

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Jake has been running in the evenings and taking Levi in the jogging stroller. We try to keep things like this a secret from Malachi because we don’t want him to feel left out, but Jake accidentally talked about it in front of him one day this week. You could see a bit of jealousy in his sweet eyes and we never want Malachi to feel left out. Jake rigged up the jogging stroller so Malachi could give it a try, and he giggled the whole time. Unfortunately the stroller isn’t supportive enough for him so we won’t be able to make it a regular thing but it sure did make his day to get to run with daddy.

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As you might remember, back in 2017 I wrote a Facebook post about a sweet encounter we had with a mom and her children at a Chick-Fil-A. God caused the post to catch fire and in the lat 2 weeks it has seemed to spark again. When this happens lots of visitors find the blog…as an example of the insanity, just today over 18,000 people have visited the blog. WHAT?!?!

Let me rewind a bit and remind you how this blog began. When Malachi was born at 24 weeks we found ourselves repeating the same medical updates over and over again to family. Repeating the bad news so many times was very hard on my heart so we began writing daily updates. God drew Jake and I very near to Him those dark days and would lay verses on my heart to tape to Malachi’s incubator each night in the NICU. We started sharing those verses at the end of each daily update.

When Malachi came home after 4 months in the NICU we decided to continue to updates, but change it from daily to weekly. And here we are 6 years later! To be completely honest, the blogs are more for me than anyone else. I need a place to dump my emotions, fears, and thoughts each week and then leave them behind to start fresh. God continued to lay verses on my heart each time I wrote so I just kept adding the devotional thoughts at the end.

Fast forward to today. The updates are something I still need to do….for me! I have thought about stopping so many times and each time this happens God clearly tells me it isn’t time to stop yet. There are weeks like this one where writing the blog is difficult and something that weighs on my mind during a busy day. They typically take at least 2 hours to write, and I sometimes can’t start until after the kids go to bed at 11. But if I can offer anything to God, obedience is most definitely an easy thing to focus on.

As God has brought an audience to our journey I have been absolutely awestruck. Literally speechless. While I love to write, my skills alone are not able to draw a crowd of thousands. God is up to something y’all. And I am as in the dark as each of you.

I get a lot of messages talking about my faith, so tonight I want to address that thought.

My faith is sometimes weak.

I am not doing a fake humility thing by saying that, just being 100% raw and transparent.

But this week as I read all these messages talking about my “extraordinary faith” I started to feel a bit uncomfortable. I see so many holes in my faith, and I started to worry that maybe I haven’t correctly portrayed the struggles I face with keeping that faith.

And to be honest, I feel inadequate many times. I think back to the conversation God had with Moses in the wilderness after he told him to go and speak to Pharoh in Exodus 4:

10 Moses said to the Lord, “Pardon your servant, Lord. I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.”

11 The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind?Is it not I, the Lord? 12 Now go; I will help you speak and will teach you what to say.”

When I read those words I cringe when I apply them to myself. I want each of you to apply them to your lives as well. We make so many excuses as to why we can’t serve God. We find so many reasons we are “unworthy” to share our faith with the world. But like God plainly stated to Moses, He created each of us and knows what we are capable of doing for Him.

We are just called to obey.

I don’t know what things you may be dodging right now. Maybe there is something big God has put on your heart to do, but you have allowed the excuses of feeling inadequate to keep you from committing.

Just remember that the God who created you knows your capabilities much more than you do. So if He calls you to it, assume that He has given you the ability to accomplish it with His help.

He is just looking for people ready and willing to be the hands, feet, and mouthpiece for Christ. Are you truly willing to step out in faith?

Much love,

Leah

The Robe

The Carroll summer fun has continued this week with all sorts of adventures.

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We tackled lots of appointments and therapies with both of the boys, getting back into the swing of things.

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Malachi went to Vacation Bible School every night this week and had a blast with his friends. Of course his favorite thing seemed to be the recreation part. He had never played kickball before so adding in the concept of running somewhere after kicking the ball intrigued him. He scored a home run and when everyone cheered he was full of giggles. He was so joyful so I took a short video to share with you:

Malachi is a very routine oriented kid, and while he doesn’t mind a change in the plans, it takes him a bit to get into the groove of new adventures. After the first night of VBS I asked him if he wanted to go back the next night and he signed YES.

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I asked him if baby Levi could come (who is technically under the age limit so Jake would have to come with him) and he signed NO. We asked him each night and finally on Thursday he gave Levi the green light to join us.

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We try very hard to respect Malachi when he has an opinion on something. We always want him to know that we are listening and hearing the things he is trying to say, even though he cannot speak. Obviously if it crosses the line into being mean we won’t allow it, but we recognize his need to be independent from Levi every now and then.

We have actually been splitting the boys a lot lately and it is so interesting to see how their behavior changes when the other one is not around. Malachi absolutely cherishes the one on one time with Jake or I- he is very snuggly and sweet. And Levi craves our undivided attention when he is alone with one of us.

Levi’s nose started running this week and we noticed him getting a bit more clumsy than normal (hence the bruise on his head). Those have been the classic signs of an impending ear infection so we watched and waited. Last night the pain hit around 2am and he woke up screaming. This time he was tugging at both of his ears so we went to the walk in clinic this morning and had it confirmed- double ear infection. This is his second infection in 3 weeks so we are going to have to have a conversation with his pediatrician about putting tubes in his ears.

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Like I have said before, we have had a hard time getting walk in clinics to treat Levi for his ear infections. EVERY SINGLE ONE has hit on a Saturday night leaving us no other option but the emergency room where lots of germs breed. Now that he is off oxygen we have a bit more luck sneaking him in before they ask about his medical history and get nervous. This go around we made it to the final minute and the doctor asked if we had ever seen an ENT…busted. I had to explain that he has had nearly two dozen airway procedures in his 18 months of life and that we have several ENTs on speed dial.

Levi started his new antibiotic and crashed this afternoon. We are praying for a restful evening for him.

Today we had a celebration at church, complete with a petting zoo! This was right up Malachi’s alley and I couldn’t wait to take him out there to feel some of the animals. Unfortunately two of the things he hates the most is sunshine and heat so he shut down a bit, but he came out of his funk enough to pet and hold a few of them. I snapped a few pictures to share with you.

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Medicated Levi and Jake stopped by and got to snuggle a bit. We have been working on “gentle hands” and thankfully he did great with that concept.

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We are gearing up to leave on Saturday to take our youth group to camp in SC. Jake will be staying with the kids at camp (27 kids and chaperones) and the boys and I will be staying at a rental house down the road and traveling back and forth as needed. This year some friends at church who happen to be nurses are going to join me to help with the boys. If you remember the rat poop fiasco from last year you will recognize how happy having help makes me.

I have struggled a bit this week with triggers. Things that mentally take me off into the past as they remind me of a disappointment I have had to process. This week it was the gray bathrobe. I caught a glimpse of it in the bathroom mirror, hanging uselessly on the towel rack and it stirred up so much sadness.

We longed for Levi’s pregnancy to last longer than Malachi’s 24 weeks. I cautiously and optimistically put off all preparations for as long as I could stand it, wanting to make sure I wasn’t “counting my chickens before they hatched”.

The closer we inched to the goal 36 week mark (for medical reasons I couldn’t carry past 36 weeks or go into labor) the bolder I got with my imagination. I imagined bringing home baby Levi after a normal, uneventful 3 day stay. I imagined being able to breastfeed and meet my sons needs without medical intervention.

And that is when I did it- I allowed my hopes and dreams to morph into a trip to Target. I walked the aisles until I found the gray robe. It was going to be the robe I kept close so I could throw it over my pajamas when friends came by for a visit. It was going to be the robe that I packed into my hospital bag, ready to be used in the hospital bed as I breastfed my son for the first time.

I had big dreams for that robe.

This week it almost felt as if its presence was taunting me from its reflection and I started to feel that seed of bitterness starting to sprout deep down in my belly. I am beginning to think that disappointment will forever be my kryptonite…it will be the one thing that I can never get rid of alone. It will be one of the biggest struggles that keeps me connected to the Vine.

The robe sent me into the rabbit hole of Levi’s birth and the emotions of that day. Jake and I spent some time talking through it, which is something we don’t often revisit. Our hearts intertwined in their hurt during that conversation and in the end it made us both feel a bit better.

But the reality is that my life and your life is going to be plagued with disappointment. It will be riddled with bath robe triggers and reminders of past failures.

But the thing I often forget is that the devil is the author of those moments..they are not of God.

1 Peter 5 says “And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.”

Day by day I see the ways that God is restoring our family. Through each moment and period of suffering he builds our family stronger, firmer, and more steadfast. I have to choose to always see that truth.

Maybe you are in the middle of your restoration, or maybe you are like me and still in prayer for the day it comes. Wherever you may be in your life, believe with me that God will make us stronger, firmer, and steadfast into looking to Him rather than our circumstances.

I am so tired my eyes are starting to cross so I am going to wrap this up. Please keep my family in your prayers this week as we head to youth camp with our teenagers! And please pray that Levi’s ear infection responds well to his antibiotic.

 

Much love,

Leah

 

 

 

 

 

 

 

 

 

 

Later You Will Understand

This seems like an odd and over-dramatic statement but stick with me…

This is the first week since Levi’s birth that I have felt like I have been able to claim a bit of my identity back. Don’t get me wrong, I love my identity as Levi and Malachi’s mother. I will gladly sacrifice all hobbies, luxuries, and moments of alone time for them and their needs. But our world requires that everything orbit around medications, appointments, surgeries…I have forgotten what the old Leah looks like.

This week I read 27 pages from a book- a non-medical, non-special needs book. I sat in the sunshine alone for 45 minutes. I ran a soccer practice while Jake stayed home with the boys. I went to work alone and cleaned out filing cabinets. I ran a few miles on the treadmill. I rode in the van with the windows down!

I took a deep, much needed breath.

The boys have several routine appointments each week but this was a vacation week for some of his therapists. We only had 4 appointments, all crammed into one day. That left us with 6 days of normal family time! What a blessing!

We spent most of those 6 days at the house, Jake and I taking turns for some “me” time. We would each take a chunk each day to do whatever we wanted- nap, read, leave the house for a bit.

The boys both really enjoyed the down time as well, Levi into everything he can get his hands on and Malachi as his ready and willing accomplice. Levi is getting good at rolling Malachi into different rooms and climbing him to reach things he knows he shouldn’t have. I was cleaning one day and heard the distinct sound of an air register being pulled up from the floor and a loud thump of something going into the duct work. The culprit was gone by the time I made it over there and I had to spend several minutes trying to figure out how to dig an unseen sippy cup from the vent. If you come by our house, ignore the new painters tape on all the vents.

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I know I post a whole lot of pictures of Levi sitting on Malachi. It is because they are inseparable. It doesn’t matter what chair I put Malachi in, Levi will climb Mount Everest to get into his brother’s lap. I always ask Malachi if he is okay with Levi sitting there and he almost always signs yes. Levi brings toys up with him and shares so well.

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Here is a silly video of the two playing nicely:

Malachi is able to communicate so much without saying a word. On Saturday we headed to his soccer game and his Mickey Mouse DVD accidentally got paused unbeknownst to us. By the time we got there he had the most sour look on his face. I asked him “Malachi, are you okay?” and he signed an angry NO. We didn’t know about the DVD issue so we went through all of the body parts that could possibly be hurting him…”Is it your tummy?” NO “Is it your ear?” NO. When we figured out the DVD hadn’t played we asked him “Is it because you didn’t get your cartoon?” and he signed YES and burst out crying.

I was proud of him for communicating to us, but also a little bothered that we are raising such an entitled six year old haha! We are going to have to start working through those emotions when he doesn’t get what he wants. It breaks my heart that he got so emotionally frazzled and couldn’t communicate that frustration building in him.

He stayed pretty cranky even after the game started but scored a goal within a few minutes and popped right back to his silly self.

It was his last game for the season so he got a shiny medal, something he was so proud to get.

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Malachi’s number one fan! He finally caught on to the game, clapping avidly whenever someone kicked it into the net.

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When you spend a week mostly at the house, there isn’t a whole lot to blog about…

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We took some selfies.

Levi worked on his walking. Here is a video of him practicing with dad. Ignore the onesie wedgie:

Levi also learned how to make farty noises on the couches. This one was interesting to us as neither of us modeled the new trick:

Malachi played with all kinds of toys, using his imagination to pretend like they were alive and real. His favorite toy to play with this week was his switch adapted jack-in-the-box because it terrified baby Levi.

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We watched the Lion King, Beauty and the Beast, read lots of books and made up lots of games. Jake and I trash talked our way through Jeopardy each night and sang karaoke for the boys. We just felt so….normal.

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We looking in the backyard for more bears and watched the birds chase each other. We tried new foods and made a lot of old recipes.

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Levi made some great progress this week with his sign language, signing “more” on his own several times when he wanted more food. He is also folding his hands when we pray, which makes my heart smile. I tried to snap a picture without him catching me during our dinner prayer tonight.

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We knocked out lots of medical phone calls, fights with insurance, and appointment/trip planning for the next several weeks. We are still sorting out our Cincinnati appointments for our week long visit at the end of July.

Malachi had some temperature regulation issues this week, running a fever for two days. We think it is likely brain related because he isn’t showing any signs other than sneezing. We will continue watching him closely just in case.

Tonight Levi fell headfirst (for the second time this week) off of Malachi’s chair and hit his head on the tile floor. He was justifiably upset and hysterically crying which did cause his color to change quickly. I am sure if I had him hooked to the pulse oximeter at the moment that it would have shown a desaturation which bothered me from safe breathing standpoint. That is a big part of the discussion we need to have with his surgeons when we go to Cincy. While he is safe the majority of the time with his oxygen, what kind of damage will those brief moments have on him?

This morning Jake was given the opportunity to preach during the morning service. Every now and then when the preacher goes out of town he asks Jake to fill in for him. This used to make him extremely nervous, but this time seemed different. He seemed so confident in what God was telling him to speak about so I was really looking forward to hearing what he had to share. He spent hours preparing throughout the week.

Levi has been absolutely wild in church lately and sobs until he vomits if I attempt to leave him in the nursery. We made it through one verse of the first praise and worship song before his restlessness hit so I took both boys out into the lobby area for the rest of service. We are in a very rural part of Tennessee where technology hasn’t really taken over yet, but several weeks ago I asked them to run a speaker into the lobby for moms like me who have to sneak out with young children.

When Jake started preaching, both boys got very still and quiet. Levi crawled across the lobby and stared, mesmerized at the speaker that his daddy’s voice came out of.

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Malachi sat as still as could be in his chair, clinging to every word. They love their daddy so much! And I am grateful that Jake loves the Lord and leads our boys toward God through his actions and heart.

The verse I want to share with you all this week comes from John 13. In this chapter Jesus is with his disciples for the Last Supper, the final time he will meet with all the disciples before he is arrested. Jesus got up from the table and began to do something that none of them saw coming- he began to wash their feet.

I mention this often, but I am a genuinely awkward person. I don’t really know how someone morphs into “awkward” but that transformation happened pretty early on in my life haha! And when you know you are an awkward person, it just seems to breed awkward moments.

Whenever I read about the story of Jesus washing the disciples feet I cringe, just imagining how uncomfortable that moment was for the disciples. To see the person that you respect and admire take on the task of a servant…what a profound thing to witness. And add in the beautiful and pure heart of Jesus, doing that task simply out of love. No motives, no ill-intentions, just pure love for these men.

Other than using my imagination, I find myself unable to relate with this particular scripture chunk. It isn’t common practice for us to wash anyone’s feet. Sometimes when I read scriptures like these, that are difficult to relate to, I find myself breezing through them.

But there is one verse in there that pulled at my heart this week. Jesus comes to Simon Peter to wash his feet and he says in disbelief “Lord, are you going to wash my feet?”

Jesus responds in verse 7 “You do not realize now what I am doing, but later you will understand.”

I got chills tying that statement. I have such a visual of Simon Peter looking down at the Lord next to his dirty feet. I see Simon Peter’s face turning red with shame at the filth he has on him.

But the filth doesn’t even phase the Lord. Our filth doesn’t even make him flinch. He sees those dirty parts of our lives, the parts we try to hide, and he bends down to gently wash the filth away. Only a loving God would do that.

There are so many times in my life that I have found myself in Simon Peter’s place. Again and again God has come and found me in my brokenness, my sadness, my sin, my pain and simply cleaned my tired feet and soothed my broken heart.

I can almost visualize the kind eyes of Jesus looking up at me and saying “You do not realize what I am doing, but later you will understand.”

God is all knowing, but our human hearts can’t handle the power of that trait. So as uncomfortable and awkward as it may be, sometimes we have to sit in that seat and allow Christ to remind us that later we will understand why our feet have to walk the paths that they do.

One day I will understand why God took us across the curvy, rocky, sharp paths of Malachi’s journey.

One day I will understand why God put mountains in Levi’s path but hasn’t yet given us the ability to move them, despite our desperate please and bushels of mustard seed faith.

One day I will understand. But for now I am called to sit in that seat and witness the love that Jesus has for our family, as he sees our wounds from the journey and longs to soothe them with his tender heart.

I am called to take that love that Christ has for the Carroll family and share it with others. I am called to minister to other weary, dirty-footed travelers that we meet along the way. I am called to share with them the hope we have in Christ.

I hope you let Christ wash your feet this week- even if you are awkward like me 🙂

Much love,

Leah

 

A Cord of Three Strands

Another busy week in the books for the Carroll clan.

On Monday Levi and mommy headed down to Chattanooga for the dreaded swallow study. Now that his vocal cords are showing movement, doctors all want to see if he is safe to drink thin liquids. Our end goal would be to not have to use the g-tube anymore for his nutrition but that will require 6 months of us never using it.

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I felt very confident that he wasn’t aspirating thin liquids prior to his cords moving so I was certain he would pass this go around. But in order to check that box on everyone’s list we jumped through the hoop and went for a formal swallow study.

 

I will assume that none of you have had to witness one of these studies so I will describe the process a bit. Levi is required to sit in a special chair that has a real time x-ray machine attached to it. Liquids don’t show up on x-rays so they add something called barium sulfate (a metallic compound) to the liquids to help them show up. The problem is that the barium is chalky, white, and doesn’t taste good at all.

So lots of problems with this…

  1. Levi sitting in an unknown seat surrounded by machines all by himself.
  2. Levi drinking and eating anything on command, especially when it really is a new concept to him.
  3. Levi drinking something that tastes disgusting.

As soon as we plopped him in the chair the drama began, as we assumed it would. He took one swig of his sippy cup but as soon as the barium water hit his tongue he spit it out and didn’t swallow anything. We then tried barium laced applesauce and he refused that too and started panicky crying.

At this point my instinct is to pick him up and run, but as a medical mamma you learn that this isn’t really, TRULY an option. If I were to leave then the doctors would simply schedule another one and hope it goes better. It isn’t something we can simply just not do. So I went into medical momma mode.

Medical momma mode is a bit hard for outsiders to understand as it really does defy natural instincts. It requires that you remove all emotions from situations when you have no other choice but to embrace the suffering. Holding your child down for necessary IVs and blood draws, forcing life saving medicine down their throats, stabbing Malachi with two injections a day when he was going through his infantile spasms.

There is so much guilt when I have to go into this mode. I hate it. Genuinely despise it. And I always wonder what psychological impact this has on my sweet boys to see their momma doing things to them that causes pain and sadness.

So I forced barium water into my crying sons mouth, watching him swallow it instinctively with each inhale for more air as he grasped for me to pick him up and comfort him. And just praying that it would be enough evidence to never have to do this to him again.

We got the data we needed and then I did my best to rebuild the trust between Levi and I. What he did drink, even when crying, went down his throat correctly and none went into his lungs so he passed the test.

Speaking of tests, we still need to do one more overnight sleep study with Levi but this time we have been given the option to do it at home. Levi is no longer leaving his oxygen tubing and pulse ox sensors on at night so he has really been making me nervous. Last night he had a quick oxygen desaturation but most nights he has been holding his own after he tears his oxygen off. We will likely pick up the equipment for that study this week and try to knock it out.

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Malachi and I made the trip to Nashville late Tuesday night and stayed the night in a hotel. And don’t worry- I packed my rubber gloves and hospital grade cleaner and scrubbed the fire out of the place before settling in haha. He was so excited about our “adventure” and loved the one on one time he got without little brother picking at him.

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On Wednesday morning we went over to the hospital for two appointments, one with his orthopedic surgeon and the other with a spine surgeon. The appointments were routine, starting with x-rays. The orthopedic surgeon seems content with Malachi’s feet since his surgery in November. Malachi’s hips are both 100% out and we can now feel the head of the femur bone protruding all the way out towards the back of his butt. The biggest concern right now is pressure sores from the heads of those bones resting against things. But as long as they continue to no longer cause him pain we will leave them.

Malachi’s spine is progressively getting worse and there really isn’t anything we can do about it right now. He is at a 45 degree curve in the bottom of his back but the hope is to avoid any surgeries to place rods until he finishes growing. Sometimes with kids like Malachi the curve can put too much pressure on the diaphragm making it hard to breathe. We are nowhere near that point right now but will be followed by the spinal surgeon at least once a year to monitor the progression.

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So no big decisions had to be made and no hard conversations had to be had. That is always a blessing!

Malachi was really buying into the idea that it was just him and mommy so I stretched out our drive home to make it a special day for him. We went to Chuck-E-Cheese and played games for about an hour. Overstimulating environments like these are hit or miss with him, and we know that strobe lights trigger his big seizures so I was a little hesitant but thought we would try.

He made it about 25 minutes and then had a massive over-stimulation breakdown, sobbing uncontrollably. These moments are so hard for Malachi; he wants to be there and play the games but his brain just can’t handle it. I asked him if he wanted to leave and he said no so we sat in  the back corner for about 20 minutes until he calmed down enough to play a few more games. Poor buddy. But he didn’t have a single seizure so that is progress!

Here is a video of him playing one of the games. He loved it!

We used the tickets he earned to get some cotton candy for he and Levi to share. He liked picking out the colors for each of them and settled on blue (for Spiderman) and green (for the Hulk).

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We went a bit further down the road and stopped for a dinner date at Cracker Barrel. I ordered him his very own plate of mashed potatoes and gravy (usually he has to share with Levi) and we played every game on the kids menu together. His demeanor was just so sweet throughout the meal as he soaked in all the focused attention. After dinner he got to pick out a toy in the gift shop area and also pick out a candy surprise to take to daddy.

Malachi has been getting up consistently between 6:10-6:12 each morning, which means rare naps in the late morning if we are home. He has probably taken less than 100 naps in his lifetime so I felt like I needed to document.

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It was a nice little getaway for the two of us. Daddy and Levi also seemed to enjoy the one on one time. Levi helped daddy put up some new shelves in the playroom.

Levi keeps pushing Malachi’s chair into the play room so they can play with toys together. It warms my heart and Malachi loves it too!

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On Friday Jake and I celebrated our 11th anniversary! We headed back down to Chattanooga to cash in on a gift card to the Cheesecake Factory that has been burning a hole in our pockets. Why has no one told us how amazing their food is!?!?!

Whenever I have to make a medical trip or go through a surgery with one of the kids the stress of the situation completely kills my appetite. Anything I eat makes me feel queasy and that sick feeling lingers for several days. I had been feeling pretty anti-food since Tuesday morning but that delicious meal knocked me out of that funk!

We then followed through with our anniversary tradition of going to the arcade to play some games together. It is something we can take the boys with us to do and we don’t have to worry about them being too loud or not sitting still.

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The next morning I got a text from the boys physical therapist offering to watch the boys so Jake and I could go on a date! There are not many qualified people that we feel comfortable leaving both boys with, and frankly Levi has not been very tolerant of anyone other than mom and dad lately. But we figured it was worth a try so we dropped them off and headed to dinner. It was a Saturday night so we called ahead and reserved a table and somehow managed to eat dinner, eat dessert, and get back to the boys in just over an hour!

It is absolutely baffling to not have the kids with us. It feels so awkward to just walk in someplace without unpacking kids and wheelchairs for 5 minutes. Jake looked in the backseat multiple times, each time panicking because the kids weren’t there.

Levi didn’t even shed a tear after we sneaked out! Baby steps.

“Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.” Ecclesiastes 4:12

One really neat thing about the Word of God is that you can read the same scriptures over and over again and have God reveal something new each time you read it. His words are LIVING and ACTIVE!

As I read that scripture this week I felt chills overwhelm my body. I have heard this analogy and verse several times but for some reason the words roared to life as I applied them to my marriage.

I have told you many times about the staggering statistics that surround the marriages of parents with special needs children. The odds are most definitely against us, and when I see the stress level we are forced to function at I see why so many marriages fail.

When I read the Bible I do so keeping in mind the intentional nature of God when he had the authors write each verse. I read the phrase “two can defend themselves” and recognized that as Jake and I apart from God. We can fight for our boys, we can guard them from the world that continually threatens them. We can swing wildly and defend well. But we simply cannot overpower.

Our life requires the cord of three strands. It requires Jake and I asking God to intertwine himself in our marriage, in our family, and in our day to day struggles. God cannot simply be one aspect of our lives…He has to be in EVERY aspect of this crazy life for us to overpower.

I am so thankful that God aligned our paths all those years ago, in a meeting He most definitely orchestrated and ordained. I pray that we always see the cord of three in our marriage and cherish the presence of God in our family.

Thank you all for your prayers of protection as we traveled this week and tackled some big appointments. We are looking forward to a much quieter week with just a handful of routine appointments.

And one final note- we still haven’t seen the bear so I think it is safe to say he moved on. We have had lots of visits from the neighbor dogs, cats, and Hank the pot-bellied pig but no bear.

Earlier this week some people in our town noticed two baby bears that had been abandoned by their mother. They got the right people involved and the sweet babies were taken to a rescue where they are receiving treatment and nourishment as one was just a meager 4 pounds.

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This is the baby girl that they named “Dandelion”. I thought you all might like seeing a photo.

God bless you all this week,

Leah

 

A Heart Like His

It’s officially June y’all! This week we have medical tests for Levi and a Nashville hospital trip for Malachi, both of which are weighing heavily on my mind.

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We don’t expect to hear bad news from either one, but cautiousness still lingers in my heart. Malachi will be seeing his orthopedic surgeon to talk about his hips, knees, feet, and spine. We know that a possible hip surgery is in the future for Malachi as both hips are completely out of socket, but we would love to prolong it as long as possible. The recovery from a massive surgery like this one is so physically taxing on his body. For those of you who are medical nerds like me, the formal name of the surgery is double femoral osteotomy where they completely saw off the head of the femur that is out of socket. Very painful!

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Levi and daddy watching Malachi at his swimming therapy.

Levi will be attempting a swallow study, so I undoubtedly will have a funny story to share with you about that one next week. I can’t imagine it going well from a behavioral standpoint.

Levi and his best buddy Tanner. 

Last night Levi’s pulse ox was reading his heart rate a bit higher than his norm. Usually this means something is agitating him or he is running a fever so I watched him closely throughout the night. Around 3am he woke up screaming so we headed to the living room for an all nighter. He was hitting all the markers of having an ear infection so when Jake and Malachi woke up we headed out, dropping Jake and Malachi at church and Levi and mom headed to the doctor.

Our pediatrician doesn’t have Sunday hours, and inevitably Levi always develops an ear infection on Saturday night. We had a very difficult time finding walk in clinics that would see a medically complex child like him, even for something as simple as an ear infection. Now that he is off his daytime oxygen I thought we may be able to get away with it! We successfully made it to a room in one and as the nurse left to get the doctor she casually said “By the way, I forgot to ask if he has had any surgeries in the past?” I pulled out a copy of  his medical summary and her eyes grew wide. But after 20 more minutes of the doctor pouring over his medical diagnoses and asking lots of questions, he confirmed the ear infection and sent a script for an antibiotic.

Levi has been acting off most of the day today and took a 5 hour nap this afternoon. We will likely have another long night but hopefully by this time tomorrow he will be back to his silly self.

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Malachi has had an amazing week. He started his summer swim therapy sessions and got to ride his horse on his belly like a superhero.

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The biggest highlight (the thing he gets the most excited to talk about) was that he scored a goal in his soccer game. Malachi is strangely competitive which is so intriguing to me. At his last soccer game the final whistle blew and he burst out crying. I thought he was in pain or something was wrong so I started asking him what was making him cry. As I went through the list he indicated that he was sad about the game. I continued to ask him questions and it took all of 30 seconds for him to narrow it down to being sad about not scoring a goal. I told him how well he passed the ball to his friends in the game, but passing the ball doesn’t make everyone cheer like a goal does.

Here is a cute photo of Malachi and his buddy Lincoln. These two were in the NICU at the same time, although our paths didn’t cross again until recently.

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We walking in on Saturday and found out that one of Malachi’s school buddies and his family had come to cheer him on. Malachi was all smiles when we told him they were there to watch him. I told him to show me his game face and he got super serious.

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This time around we tried to put one in the net and he finally knocked one in! He was giggles and excitement as the crowd erupted into cheers for him. He laughed the rest of the game and we made it our priority to help our friends score some goals. He even got a few more headers this game!

Here is a video from the game to give you a visual of how it all works. We didn’t get his goal on film but he got close to scoring.

Jake and I planned a big youth group summer kick-off party and it was a blast! We spent longer than I care to admit filling chunks of panty hose with color powder but it was definitely worth it to see how much fun the teens had.

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I claimed the role as photographer so I made it out relatively unscathed. But Jake on the other hand is still green.

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On Friday afternoon we met up with the Robotics team teacher that adapted Malachi’s Wild Raptor ride on car. If you are new to the blog, the local robotics team re-wired a Power Wheels toy so that Jake and I can control it from a remote. Malachi absolutely loves his “Wild Raptor” and we are s grateful the team was willing to create such a special toy for him.

This particular teacher has a big heart and after completing the project for Malachi he has decided to create the same opportunity for other special needs children with unique needs. He is creating a project called “The Malachi Movement” to link up special needs families around the country with a willing robotics team close to them. They can submit their information and he will link the two parties and give them the tutorials needed to complete the job. He has also created a way for people to donate parts and even the car itself to the program for families that can’t afford to purchase the pieces required for the adaptations. I will try to get some more information out to you in case anyone is interested in helping financially.

Malachi rode his raptor this week with his cousin. They had a blast playing with the dinosaur head from it too:

This week I have been really challenged by the idea that we are to bring glory to God in every aspect of our lives.  When I realistically look at my days I find moments that I feel sure bring glory to God, but there are more moments that either a) aren’t necessarily “bad” but don’t glorify Him or b) do the complete opposite of bringing Him glory.

I have shared with you before that I continue to struggle with anger and resentment over things that are not in my control…which is pretty much motherhood summed up for me. There are so many missed opportunities for me to reflect Christ to my own children, and instead I choose to be angry. There are moments with Jake that I can reflect the servant’s heart of Christ but instead I choose selfishness.

There are so many moments when I am dealing with the medical community that I do not reflect Christ to others. There are moments I am ashamed of. Moments that are birthed from my frustrations and expectations.

There are moments of anonymity, when I am in environments where people don’t know I am a Christian, and I use that as an opportunity to act in a way that is contrary to the nature of Christ. That is so shameful to admit but something that our earthly minds convince us is okay to do every now and then.

But what I keep choosing to ignore is that God has given me a new heart. Not a new attitude, not a new disposition, but a new heart. A heart that is made like His.

Ephesians 4:24 “And to put on the new self, created to be like God in true righteousness and holiness.”

This week God has been challenging me to allow His Spirit to reflect from me in all situations, not just the easy ones. Doing that does not come naturally to any of us, even after God has transformed our hearts.

Living a life with God isn’t a one-time, check it off the list decision. It is a daily, hourly, second-by-second one that we have to choose again and again and again.

My prayer this week is that God is able to consume those selfish tendencies in my heart. I pray that He gives me the desire to be that mirror God calls us to be, and He continues to use me to reflect His beautiful nature to others.

Please be in prayer over our family this week as we tackle some big appointments!

Much love,

Leah

 

 

 

 

Kiss the Wave

Our family has collectively breathed a big sigh of relief…Jake is off for summer break! This sounds dramatic and odd but this is the happiest my heart has been for a long time. I needed the summer break desperately to help reset a bit.

These boys…

Malachi has been Levi’s “walker” as he pushes him all over the house. Today I told Malachi that he was helping teach Levi how to walk and grinned and put his arm around him to “help” some more. And my heart melted. He loves being a big brother!

Here is a video of one of their living room field trips:

I figured we would kick off this entry with a story. We drove into town this week for an appointment and when we got there we found out it was canceled. Bummer! We had already made the 30 minute drive and planned our feedings around the block of time so I decided to capitalize on our trip by going to Target. Usually when we go it is for the essentials only but after my shopping I walked by the women’s clothing department and saw some tops that I wanted to try on.

We waited as patiently as possible for the handicap fitting room and I promised the boys mommy would be super fast! As I wheeled them into the stall Levi caught a glimpse of himself in the mirror which was reflecting another mirror. I guess seeing so many Levi’s and Malachi’s was too much for his brain to handle and he went into full fledged meltdown mode.

He has a shrill scream when he is scared and mad that sounds eerily like a chimpanzee and he went full chimp mode on me. I was holding him trying to calm him down while simultaneously trying on tops as fast as possible but there was no consoling in the stall of many mirrors. Every time he looked behind him to see if all the other Levi’s and Malachi’s had left yet he was frightened yet again- rekindling the chimp screams.

After 30 seconds of that nonsense I started wondering what in the world I was thinking! My brain was yelling RETREAT!!!! I could hear the other customers making comments about what was happening in handicap stall #1 and my face started turning red. We scrambled out of there, Levi clinging desperately to me and Malachi hysterically laughing at his brother’s ridiculousness. I awkwardly held a screaming Levi while pushing a double stroller/wheelchair and pulling a full shopping cart up to the register.

Moral of the story- I will now be avoiding all environments with more than one mirror on the wall. And shopping online for clothes.

We run pretty non-stop and fill our plate as much as possible, but each year we give ourselves a few weeks at the beginning of the summer to catch up. We have already accomplished more in the last three days than we have been able to in the last several months. Lots of house projects, cleaning, and much needed organizing.

Which means lots of toy playing to help occupy the boys. Malachi’s new favorite game is rolling cars off his tray at Levi. We have to sit him up high if we are going to leave the room, even if for a few seconds. Levi will scramble over and climb on Malachi any chance he gets. Usually this is okay but at one point this week he got a little too rough with Malachi and Malachi bit him on the chest in self-defense.

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To recap a bit, Jake and I built a handicap accessible home for Malachi and moved in when I was very pregnant in October 2017. Levi came about 4 weeks later  and we lived in the Ronald McDonald House for about 5 months. When we came back home in March 2018 I still had boxes that needed to be unpacked and a huge list of projects that were supposed to get done a long time ago.

I am absolutely determined to start tackling some of those projects! We have been prioritizing them and went to the hardware store this week to pick up some things. Malachi was in love with the place, listening to all of the saws and noises. Levi was terrified out of his mind (chimp screaming again) and desperately reaching out to hold Malachi’s hand.

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I took a few seconds of a video for you as we were checking out:

Our week was full of lots of noteworthy things for the boys. The biggest one being Malachi’s graduation from kindergarten! I talked Malachi through the idea of graduation and as he listened to the details he got a big smile on his face. Malachi loves compliments and encouragement from others so when I got to the part about them saying his name and everyone clapping he lit up. He also got to wear a special shirt he and his inclusion classmates made, and he was very happy about that.

Jake drove over from the high school just in time to help wrangle Levi and see Malachi’s big moment.

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After the ceremony his teacher gave him some awards in class, and one included a sucker. The smile we captured is one of my favorite types of Malachi smiles.

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We are so grateful to live in a small community where everyone is rooting for Malachi as much as we are. And the kids are so incredibly kind to him.

 

 

Jake did his annual Redneck Regatta project with his Algebra 2 class. They have to design, scale, and build a cardboard boat that successfully floats a designated length of the river. It is always fun to watch as many of the boats usually don’t float (meaning they did the math incorrectly). The boys and I got there just in time to see Jake and another teacher racing two of the successful boats. I thought you might enjoy watching a quick clip:

We held the high school girl’s soccer tryouts this week and closed out the high school boys soccer season with their awards cookout. The boys love tagging along. Malachi even got to take his wild raptor to the cookout!

And Levi got to practice driving a real car with his buddy Tanner. Don’t worry- it was not on a real road!

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Side note- look how great that eye looks! It has finally healed up from surgery! And nice and straight.

We tackled lots of appointments this week, including a big trip to the GI doctor. Both of the boys have g-tubes so nutrition has to be followed and calculated pretty closely. With Levi becoming more mobile he is burning lots of extra calories and has been losing weight so we have to adjust his caloric intake but also need to be cautious about giving him too much formula in a day.

I have been trying to transition him from continuous feeds to bolus feeds. On continuous feeds he is hooked to his feed bag 18 hours a day which is getting more and more impractical with a busy baby. So this week we are trying to feed him all night while he sleeps and then get the rest of his calories in him with 4 feeds a day that we pump in over the course of 30 minutes each. His stomach isn’t used to that much volume at one time so we are easing into that goal, but so far so good.

And now that the vocal cords are moving he is at less of a risk for aspirating if he does vomit. We are also trying to really push a sippy cup. He is scheduled to have a swallow study next week and in order for that to be successful he is going to have to be able to drink a small amount of barium tinted liquid. And be in a cooperative mood. I am going to go ahead and predict that the whole thing will be a nightmare haha.

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So back to the GI doctor updates…Levi is just over 21 pounds (at 18 months old) and Malachi is at 29.5 pounds (at 6 years old). Rewind to life before Levi was born- Malachi was a whopping 40 pounds. He lost 15 pounds while we were in Cincinnati trying to manage the stress of both children (still feel so guilty about that one even though it was unavoidable). We have been trying to get Malachi back to a healthy weight.

The appointment took quite a long time and Levi’s attention span has been dwindling faster and faster. We found a winter hat in the bottom of their double stroller to keep him entertained.

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Malachi and Levi’s bond continues to grow in a special way. Levi has started carrying toys up for Malachi and him to play with together. I had another heartwarming moment as I watched Levi trying to play peek-a-boo with Malachi. He knew Malachi couldn’t hold up the blanket so he did it for him…I caught a video of it to share the sweetness with you all:

I have always noticed and admired the siblings of special needs children. They don’t see the world like everyone else. They see through labels as if they don’t exist. Levi is going to grow up with such a special perspective and I can’t wait to have those unique conversations with him one day. May he always see the value in the Malachi’s of the world.

I read a quote by Charles Spurgeon, a nineteenth century British preacher, and it has been repeating in my head all week.

“I have learned to kiss the wave that throws me against the Rock of Ages.”

Sometimes I think about where my life would be right now had things gone the way I had planned. I would be giving birth to boy #4 this month. We would still be in our log cabin living a modest life that sustains itself on one income so I could be a stay at home mom. My plan was to go back to teaching when the youngest son entered school. I envisioned my days full of riverside picnics with friends, craft time, healthy home cooked meals, and lots of fun with my brood of boys. Healthy boys, free from diagnoses and pain.

But I got hit by that wave that Spurgeon talked about. That unexpected, unforeseen thing that escalated things in my life towards a world I didn’t even know existed.

I sometimes resent that wave. In fact, I get mad at that wave more frequently than I care to admit.

But more and more these days I find myself kissing the wave.

As much as I can envision my life how “it was supposed to be”, I can use that same imagination and see where my spiritual life would be right now had I not encountered that life changing wave that threw me against the Rock.

While I had experienced trials earlier in life and had a solid walk with God, this new path has taken my relationship with Him to a level that I couldn’t have imagined. I see His mysterious ways with fresh, new eyes. I watch as the scriptures come to life in our lives. I hear Him. I see His hand work to prepare our steps.

And most importantly, I have realized how much I NEED Him.

Had the wave not hit I don’t know that I would have received the blessing of experiencing a life fully dependent on God.

The waves in life are brutal, nasty things. Their purpose is to upset, uproot, and destroy. Their intent is to smash you into the rocks and leave scars on your heart and soul. They are meant to defeat you and they are not of God.

But without those waves of destruction that the devil creates, we would not learn what it feels like to land in the arms of God.

So as I sit safely in the palm of His hand, knowing that He has ordered my steps in this chaotic life, I can often turn and genuinely kiss that wave.

Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.”

This life that goes against everything that I envisioned is so much richer and more beautiful than anything I could have imagined. It has redefined the word “value” and allowed us to see that God places purpose in places where our human eyes see none.

My prayer is that as the years go by, and the waves inevitably continue to come in our family that God will help my heart be able to kiss that wave more and more, recognizing that it brings me closer to a mighty God.

Much love,

Leah

 

 

 

 

 

Rivers & Lakes

Summer is almost here! When you are married to a teacher you get pretty excited about that last week of school, knowing you are about to get 24/7 help with the kids at home and at appointments. And maybe keeping an unnamed child out of the pantry and away from the powdered sugar bag. It was pretty easy to narrow down our list of suspects by a) following the trail and b) eliminating anyone from our list that can’t walk.

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Summer also means medical traveling season begins for our crew. We try to time all of our out of town medical visits for June, July, and December so Jake is able to come with me. We will travel to Nashville for appointments at the beginning of June. We also heard back from Cincinnati and we will have four days of appointments followed by a procedure at the end of July. They are eager to take a look at Levi’s vocal cords and assess the level of movement.

With the summer comes the hot temperatures! Malachi is very sensitive to heat and the part of his brain that manages temperature regulation is very damaged. Saturday was in the high 80s, which isn’t that bad but his body had adjusted to the cooler temperatures we have been having and just panicked. We got him home from his indoor soccer game and he was running a fever of 102. There is a noticeable difference between Malachi’s sick fevers and Malachi’s brain fevers and we knew this one wasn’t sickness related. We were able to bring it down over the course of 4 hours, but when we do this he usually continues to drop and becomes hypothermic so we have to watch him closely.

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Great news- the bear has not been back in over 5 nights! Usually that means he has moved on, so we have been thrilled. He didn’t even stop by for salmon night, which is his favorite night to swing by unannounced. We even got brave enough to go on a few walks this week!

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Levi has been getting more ambitious with eating and drinking, and it has been so fun to watch him discover new tastes. It is a very slow process as we are combating some serious oral sensitivity but he is making such big gains. I take a picture of each new food he eats to remind me when the feeding therapist asks each week.

For the first time ever he successfully got some water out of his sippy cup!

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He has also started telling me “no” with his head shake, which cracks us up. Here is a video:

We had so many appointments this week that Malachi was only able to go to school for a bit on Friday. He started to get emotional a few times while he was there but did much better than last week.

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He did get to go to a career fair at church on Wednesday evening and see a fire truck and a police car!

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Levi is still absolutely obsessed with big brother Malachi.The feelings are mutual.

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Any chance he gets he will scramble up onto Malachi’s lap and sit with him. This week he has been giving him lots of big, wet kisses. I filmed some for you to see:

Levi had his post-op visit with his eye doctor this week. I have decided that these are my least favorite appointments in our cycle right now. We drive nearly an hour there, they dilate his eyes, and sit in a crammed waiting area while the eyes dilate. They tell you it takes about 30 minutes. But inevitably we get stuck in that waiting room for over an hour. Then they take us to an exam room for our appointment which is literally two minutes long. Two minutes. This week’s appointment was just shy of 2 hours, and only two minutes of that was actual doctor time.

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I was doing my best to keep Levi entertained and Malachi content and fed, but my stress level was at its max. I was on the verge of tears by the time we actually went back to the exam room and on the way out of the building I lost it and began sobbing.

I couldn’t even pinpoint why I was so emotional…I think to summarize it best I just felt so “unseen”. We were just another name on a sheet of paper. No one cared that we had sat in a crammed waiting area for over an hour. No one cared that I had two complex kids to deal with during that time. No one cared that I had to use the restroom but had no way to get both of the kids and myself out of the office area and across the hall into the tiny public restroom. They all saw what I was dealing with, but no one cared.

They don’t have to care but I just wish we were in a world where their instincts were to care about their patients. Not just cycle them through their assembly line. Hopefully you know me well enough now to know that I do not expect special treatment in our world….I want this same caring treatment for ALL children, not just my own. If you are in the healthcare industry and reading this, please remember to treat your patients as more than just a number. Make sure your environment is not void of compassion. Look for the signs of a weary mother and offer a word or act of kindness. Look for a child struggling to stay calm in a place that prods and pokes and offer a smile. Don’t just look but see. 

Church has been challenging lately. Levi is too wild to stay in service and too clingy to go to the church nursery. I have been so discouraged as we get all geared up and I am stuck sitting on a bench in the lobby with a bored Levi. I can’t stand when people complain about things but don’t put any effort into actually fixing a broken process, so I spent the weekend setting up an area for for us to comfortably sit at during the service. Some men in the church even rigged up a speaker so we could hear the sermon in the lobby where we sit! As you can see in this picture, I can’t even walk three steps away from Levi before he loses his mind haha.

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We were also joined by some friends in the same boat.

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Random thoughts time…

On Friday afternoon I walked up to the side door at Malachi’s school to pick him up. Over the last few weeks a momma bird has been diligently preparing a nest and recently laid eggs. Each time I approach that door to the school she flies away, just missing my head so I have been cautious about not surprising her.

When I walked up to the door on Friday she didn’t budge. I looked up at her, giving her plenty of time to react and fly away, but she just looked right back at me. Her eyes were wide, her beak was open, and I could see stress in her face. This sounds so ridiculous, but I saw so much of myself in that momma bird in that moment.

I rang the doorbell to let them know I was there and then took several steps back to give her a break from her anxiety, but her faced never changed. As I stepped back I noticed that there was another bird on the nest as well (I am assuming daddy bird) and he was facing the opposite direction, both as still as could be.

As I looked again into the eyes of the momma bird I could tell that she wasn’t even recognizing my presence as a threat. There was something else going on. I took another step back and spotted it- I could see the distinct pattern of a snake a few inches from the bird’s nest.

My heart started to break for those birds, and my connection with them deepened to a whole new level.

They did everything right. They went and found the perfect pieces to build a beautiful nest. They prepared a spot high in the air to keep their little ones safe. They diligently flew back and forth to that nest each day, making sure that the environment they were preparing would be cozy for their babies.

They welcomed their beautiful eggs into the nest last week, doing everything parents should do to protect, nurture, and love their babies until they were born. And even though they did everything right, danger and possible death still lurked nearby.

Their eyes should have shone with joy and happiness. But instead they dared to not move a muscle. eyes glossed over in fear. They were willing to sacrifice their own bodies by staying on that nest to protect their babies from a known death. They were willing to make this sacrifice for children whom they had not even met yet. Because that is how deep love runs.

Jake and I have been sitting on the nest for 6 years. Our eggs have hatched, but unlike other kids, ours must stay in the nest. We have had moments where we don’t move a muscle, for fear if we let down our guard for even a second bad things will happen. There have been moments where the danger isn’t present and we relax those tense muscles long enough to breathe, but we dare not fly from that nest.

As you can imagine (with my soft heart), I can’t get those birds out of my mind. I see that panicked momma bird’s face when I close my eyes. I told the SRO officer about the snake but it had tucked itself into an unreachable spot by the time he got there to look and he said there was nothing that could be done. All weekend long I have been rooting for the birds, but googling has told me that I will likely find an empty nest tomorrow when we go to school.

The things I read on Google reassured me that this is all part of the circle of life. That snakes must eat too. And for some reason that sparked me into another rabbit trail that I can’t get out of my head…

My children were not meant to live. In another century, or even in another country today, both of my children wouldn’t have survived the day of their birth. I can’t imagine having to hold a newborn like Levi, struggling to breathe until he passed away. I can’t imagine not having access to a c-section and giving birth to a stillborn 1 pound 12 ounce Malachi.

I can’t imagine a world that doesn’t include my two sweet, uniquely “broken” children.

And I am so thankful that God has seen fit to let them leave their footprints on this earth.

It isn’t the life we imagined. I have that momma bird look on my face often, eyes frozen in resolute steadfastness to protect my babies. But I am thankful that God continues to remove the dangers that swirl around my children and threaten to take their lives.

Tonight I am thankful that even when others don’t see our struggle, God sees.

God always sees.

Isaiah 43:2a says “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.”

As I read this verse I couldn’t help but wonder why the writer said something so redundant. But the more I processed the words the more I recognized his purpose.

In life we will have lake moments and river moments. They each come with their own unique set of emotions.

In a lake moment, you are treading water and exhausted. The water rests on your neck, and the weight of that sensation is mentally difficult to fight. Your body begins to do things you didn’t know it would as panic sets in. The only thing you can seem to focus on is the water sitting just below your mouth.

In a river moment you have a destination in mind- the other side of the river. But between you and that destination is a path of slippery, uneven rocks that you can’t see. Each step you take you are trusting that your foot will land on something solid, which it doesn’t always find. Your body is tense with stress and mentally you are bankrupt as all of your energy is focused on simply taking that next unsteady step.

Both of these moments deplete you, but each in their own different way. I am sure at some moment if your life you can relate to a river moment, a lake moment, or like me you can relate to both on multiple occasions.

But back to that verse in Isaiah…in those river and lake moments God promises that He will be with us. He reassures us that the waters will never sweep over us. It is in those threatening moments in our lives that we realize how to call out to God and how to reach out in desperation, knowing that He will grab our hand and hang on until we find our footing or find the shoreline. He doesn’t always rescue us from the waters and carry us to dry land, but His hand is always extended and ready to help guide us step by step.

When was the last time you reached out for that hand, or even noticed it braced above you, ready and willing to help?

Thank you for praying for our buddy Jonathan last week. He is home right now but still healing slowly and could use continued prayers.

Please remember our boys as well, that God continues to work in a mighty healing way.

Much love,

Leah

 

 

 

Run Towards the Gutting

I feel like I should warn you that I have a ridiculous amount of pictures, videos, and stories to share with you this week. It has been filled with lots of adventures!

Emotions in the Carroll house have been all over the map this week. Since his surgery last Friday, Levi is not sleeping well at all. He screams at bedtime and finally crashes around midnight. Then he is up one hour, two hours, three hours later. His eye goo medicine has to go in at bedtime which I am confident is contributing to his big emotions. We are also battling each night to get his nasal cannula and other wires back on him without him immediately ripping them off. When the oxygen was a 24/7 thing he didn’t seem to notice but now that he has tasted freedom he doesn’t want it back on.

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His nightly wake ups have been waking up big brother, who is much harder to get back into bed. Each night is a steady stream of me racing one boy out of the bedroom before he wakes up the other.

I know what you are thinking- the easy solution is to get them into their own rooms but that would be so much more difficult on all of us. Just last night alone I was up and down dealing with Levi’s beeping machines (they were literally beeping…that wasn’t an attempt to slide in a curse word haha) and kinked cords 14 times in 8 hours. If he were in another room that would be a whole lot of running across the house in one night. He also is still getting them wrapped around his neck at night.

One night this week Levi successfully tore his oxygen off while we were sleeping. His pulse oximeter machine alarmed because he dropped too low on his oxygen and I jumped up to see what was going on. He was panicky, holding his breath and flailing (we think he had refluxed in his sleep). After quickly assessing I went into medical momma mode and grabbed my phone, ready to dial 911. It has been so many months since I have felt the need to grab the phone. I was able to get Levi to calm down enough to breathe but was a not-so-subtle reminder about the speed at which bad things can happen.

Then there is sweet Malachi. If I leave his body to do its own thing at night he starts in the shape of an “L” with his legs folded straight out at 90 degrees. He contorts his body throughout the night and ends up quickly in the shape of a V, folded in the middle. It hurts to look at him. I use my body to keep his straight at night, continually fighting his muscles. I can’t lay him on his back to sleep because when he has his night seizures he sometimes vomits, and I am scared for him to aspirate.

Malachi’s brain locks in on a time and he wakes up to the minute of that time for a few weeks. Then it suddenly changes. We have been locked in at 4:06 for several weeks. So at 4:06 I race him out of the bedroom before he has the opportunity to wake up brother (he wakes up with a seizure and can be loud). I make him lay back in the bed with me and watch cartoons at 6:00. We have been practicing whispering…he knows that he can wake up little brother by yelling too loudly and thinks it is hilarious.

This week we tried school three days with Malachi. Each morning that we are planning to go I ask Malachi if he wants to go to school. On Tuesday he excitedly signed YES so off we went. Thirty minutes after dropping him off they school called and said he was sobbing uncontrollably and they couldn’t calm him down. This is very rare for Malachi so I immediately went back and picked him up. I thought that maybe it was a tummy ache and he went pretty much back to normal right by the time we got him home.

The next morning I asked him if he wanted to go and he signed NO. I gave him some time, then asked again and he gave me a half hearted YES. I drove him there and wheeled him in and immediately he started sobbing again. We went to the parking lot and sat for a bit and talked. Malachi is very quick to respond to yes or no questions so I started asking him what was bothering him: “Does your tummy hurt?” No “Does your head hurt?” No. I never could get an answer out of him, but he had calmed down so we tried again.

His teacher took him to his inclusion kindergarten class and he had the best time! The kids in that class are so kind to Malachi and he was giggling when he left the room. I thought we had gotten past our emotions, so we tried again Thursday with no tears. Friday he was adamantly signing NO all morning long so I decided to keep him with me.

This is not normal for Malachi and with him being non-verbal it is so hard to figure out what is going on. I am confident that he is being treated like a king when he is at school, and have no fears or doubts about people being kind to him. We have been adjusting his medication slightly, trying to wean one big seizure med and that is the only big change in the last week. So we increased back up on that med and are hoping for next week to be better.

I am slightly suspicious that there are some jealousy issues going on with Levi getting to stay home with mom while he is at school. We are seeing some more of that brotherly bickering these days. I am actually proud of Malachi because he has started pushing Levi off of him when he doesn’t want him to sit on his lap! Case in point, check out this picture of Malachi sharing the swing at therapy with Levi…

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Here is a sweet video of him ALONE on the swing at therapy; note the difference when he doesn’t have to share:

Malachi’s spring soccer league started this week, which is something he has been looking forward to. He was all grins as we headed to the game on Saturday. He was especially excited about getting a new jersey.

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Malachi’s head control gets worse when he is focusing on other things. It is like his brain can’t handle all the stimulus the world throws at it all at once. At the suggestion of our therapist and DME we ordered him a neck support that holds his head up for him. It looks like a torture device so we truthfully have not used it often with him. But I thought he might be able to enjoy soccer more if he didn’t have to work to hold up his head.

I asked his permission to try it and he signed yes. I continually asked him if he wanted to take it off throughout the game and he never signed yes, which tells me he didn’t mind it. We were able to incline his seat all the way up with it on, which he really seemed to like.

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At one point in the game the giant inflatable ball flew through the air and hit him in the head. The crowd gasped and I looked at Malachi to see if he was okay. He processed what had happened for a few seconds then smiled a massive grin and signed MORE MORE MORE!

He love rough and tumble play just like a 6 year old boy should!

Let’s talk about Levi. Sweet baby Levi…

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Levi is up to no good 98% of the time. One of his favorite activities right now is ripping out the registers on the ground and trying to climb down the ductwork. We have to keep eyes on him at all times.

One night this week Jake thought I was watching Levi and I thought Jake was watching him. A story that starts like that will never end well.

I noticed when Levi was crawling/scooting across the tile floor he was leaving a trail of wetness. I went to investigate and he had a baby wipe in his hand/mouth. I told Jake “Oh no worries he has a baby wipe.” and took it from him. Jake then said “Ummm, I hid all the baby wipes from him an hour ago.”

I followed the trail of wetness back to a freshly opened poopy diaper that he had found, opened, and whose wipe he was now sucking on.

Yep. Nasty.

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Levi was dedicated at church this morning. We assumed he would cry once he noticed everyone staring at him, but oddly enough he didn’t seem to notice. He was too busy doing acrobats in our arms trying to get away. Pretty on par.

We did get some sweet photos for Mother’s Day after the service though. I couldn’t choose a favorite so I figured I would include my top ones.

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I have been hesitating giving you this next update, but when I told my grandma over the phone she insisted I include it so all her friends could hear it. So a few disclaimers so I don’t get hate mail…

  1. Jake and I LOVE animals. We have zero desire to take the life of any animal**, EXCEPT if it is endangering our lives. We have never hunted and have no desire to.
  2. I catch spiders and free them outside in an effort to spare their lives and feelings.
  3. I am ridiculously soft hearted. I remember times when I was little when I would tuck all of my stuffed animals into my bed and sleep shivering on the floor next to them. Their comfort was more important than mine.

**I will kill mice and rats in a heartbeat. They are my nemesis.

Now that we have that out of the way, here we go.

I shot the bear. Y’all….I SHOT THE STINKING BEAR. With a shotgun at about 35 feet. Yes, I got within 35 feet of our bear visitor.

Before you start addressing the angry letters let me give you a spoiler alert and assure you that it did not kill him. In fact, it didn’t seem to phase him one bit.

So starting at the beginning. We get lots of wildlife around our house. We live in the middle of the woods next to a national forest, so we expect to see some neat things. We get bears from time to time who stay for a few weeks then leave. We try to make sure trash gets taken to the dump regularly (no trash pick up where we live) and we do our best to not attract the wildlife to the house.

This most recent bear visitor has been a little bolder than ones we have dealt with in the past. He likes to hang out on the front porch from 11pm-5:00a when Jake leaves for work. That crosses our safety line so we have been trying to figure out what to do.

He checks in almost every night between 10p-11p and loves Mondays when I cook salmon so naturally we expected him to stop by. We have a security camera outside that is activated by motion so we can watch for him before we leave. Here are a few videos to show you what we are dealing with…

 

Just to remind you in case you forgot- that is our front door. And that is my van. I have to walk from that door to that van three times each morning to load the boys up and three times to unload them into the house. I travel that route at least 7 minutes each time we leave or come home. We can’t have a bear casually hanging out there. Or lurking as he is doing in this photo below. He stood like this, waiting by the door for over 4 minutes one night.

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One more photo for emphasis so you don’t judge me…

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We have been pretty passive aggressive up to this point but after watching him spend almost an entire evening out there we decided to motivate him to leave. Attempt #1 was to set off the car alarms. While he did run to the treeline it seemed to make him even more curious, drawing him back up to the van in no time. Lovely. We attempted the car alarm again and he didn’t even flinch.

Jake said “Leah, we are going to have to shoot close to him this time.” I have been shooting into the air when he is close to the house to try to scare him, but obviously that hasn’t worked. I was watching him through the window and he started to meander to the back of the house. I grabbed the shotgun and headed to the living room and watched him through the windows. He walked past the deck (where I shoot from) and I figured it would be a great opportunity to shoot behind him, maybe catching him off guard enough to truly scare him away.

But then he turned around and started to walk back towards the deck. In my head, it was now or never so I loaded the 12 gauge and ran outside. When I opened the door, instead of running like I expected him to he just stopped and stared right at me. He was poised like he was ready to run, and I wasn’t confident that the would run away from me. My adrenaline was pumping as I realized we were maybe 35 feet apart (black bears run FAST) so I pointed the gun at him and fired without hesitation. It clearly hit him and he jumped and ran off into the woods.

Jake had been watching from the windows in the living room and when I ran in he said “HOLY CRAP. YOU JUST SHOT THE BEAR!” to which I replied “I JUST SHOT A STINKING BEAR!!! WHAT DO WE DO NOW???”

We crept out on the back deck with a high powered flashlight we keep by the door for bear scares and could hear him walking around at the tree line, in my head looking for a place to curl up and die. I was shaking at this point, feeling terrible that I took the life of a sweet, innocent bear who loved our front porch so much. After all, we have a welcome sign out front that has a black bear on it. Maybe he was just confused. We gave him mixed signals. We cooked too much good smelling salmon.

Then I got really mad at Jake. Yep- I played the blame shift game: “Why did you tell me to shoot the bear?!? I didn’t want him to die!” Jake shouting back “Better a dead bear than a dead baby!” And I did what every irrational person does when they shoot a bear- I started to google things.

When I wasn’t getting answers I liked on google. I texted my dad.

“I hate to wake you, but I just shot the bear and I am freaking out. Mulitpurpose load- what is the range? He was within 35 feet. I just went into my element and aimed low…he ran off but can that kill him?”

When he didn’t respond I made the 2am phone call. He said the load I used probably stung the bear but likely didn’t pierce the skin at that range and he wasn’t going to die. WHEW! He said “He probably won’t be coming back anytime soon!”

I tried to calm down enough to sleep and finally closed my eyes, but then my phone alarmed that something was on the front porch. It was that dang bear again. And he stayed there the entire night. We aren’t sure if he was ready to retaliate or just proving a point. Jake had to scare him off the porch in order to leave for work the next morning.

I called and talked to a ranger friend who said to shoot at him every night for another week and a half and if he still sticks around they will come trap and relocate him. He hasn’t visited the front porch for four days but has been messing with the neighbors things so we know he is still close.

Our life is ridiculous.

If you have followed the blog for the last 6 years you already know that Mother’s Day is very difficult for me. My first mother’s day I woke up alone in a Ronald McDonald House and walked over to the ICU to spend time with my firstborn. His daytime nurse had so kindly bought a card and put Malachi’s sweet hand print on it for me. I remember mourning in my heart that day thinking about the fact that Malachi’s due date was supposed to be a few weeks AFTER mother’s day but here instead he was a medically fragile 3 month old that had just undergone his second big brain surgery.

Sometimes I catch myself wishing I lived in the world that many of you live in…a world that hasn’t seen true darkness. A world that doesn’t know anything about the other side of the ICU double doors.

But my eyes have been opened to that world and now I can’t unsee it. Even when I am not in it, I think of it and all the mom’s that are spending this mother’s day in those cold, dark rooms, begging that their child live to see another day.

No matter how hard I try, my heart can’t help but feel their pain. I have spent most of the day processing that empathy that often robs me of joy on days like these.

God has intertwined our journey with some other families over the last several years, and one of those friends is in the ICU right now fighting some pretty big battles. All day long I have thought about the boy’s mother, Danielle.

I read something this week that caught my attention. It was posted on some random Facebook page, but the words pierced me.

Run toward the things that gut you, the broken things in this world that beg you to stretch yourself out and lay across the gaps. Part of you- a loud part- will say stay away from those things, stay comfortable. I say run full speed toward the gutting and away from the comfortable, because you are here for such a time as this. -www.stevieswift.com

As I processed these words that I don’t think were meant to be spiritual, I realized the power in them. This is exactly what Christ has done for us. His ministry on earth was just this- running full speed toward the gutting. He didn’t waste time on trivial things. He sought out the broken, the lost, the hurting.

God never once has called us to a life of comfort as His children. How often do we look for the brokeness and run to it? How often do we choose to pursue the ugly parts of life that our minds like to pretend don’t exist.

I am now 100% absolutely positively sure that God is calling me to a ministry for medical moms like my friend on Mother’s Day, but that is beside the point. Each and every day we should be drawn to the broken, eager to show them the love of Christ.

Yes, mother’s day is a great thing. It is always refreshing to be acknowledged and honored.

Matthew 16:24  Then Jesus told his disciples, “If anyone would come after me, let him deny himself and take up his cross and follow me.”

We have been called to deny ourselves and take up our cross. My cross will look very different than yours. My walk with that cross will lead me in a very different direction than yours. But on my path I will encounter many other moms carrying similar crosses. Instead of those crossing being seen as burdens, we can choose to make them billboards that proclaim contentment in the face of adversity- something that only a relationship with God can produce. It takes God to find true contentment in bearing a burden that you have been given.

As we carry those crosses we should be looking for others on our paths that need encouragement. We should be offering to carry theirs too for a bit, seeing that their load has become too much to bear.  We should be willing to sacrifice our comfort to show the love of Christ to another.

Run full speed towards the gutting.

Tonight instead of asking for prayers for my boys, I want to ask that you lift up Danielle and her son Jonathan. Pray that she is overwhelmed with peace from God and that Jonathan’s body experiences a miraculous healing.

And in honor of them this Mother’s Day week, look for a cross that you can help carry. Find the painful thing you divert your eyes away from and run full speed towards it, looking for ways to help.

God bless,

Leah

 

 

Remove This Cup

Another surgery day in the books. The relief I feel when they are completely done is something I can’t even describe.

But before I tackle the surgery day let me run through a few random and useless updates just for the fun of it.

We caught a picture of our bear friend this week. He came on salmon night yet again.

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Our front door is to the left of those rockers if that gives you some perspective.

Speaking of salmon, our Monday shopping trips just got a bit easier now that I figured out how to rig up Levi’s big boy seat onto Malachi’s wheelchair stroller.

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As you can see in the picture above, Levi loves to mess with Malachi’s feet. Well, Levi loves to mess with Malachi period. He never leaves his side at the house, which is so sweet but also so dangerous for Malachi. This week he has been very rough with Malachi, causing him to burst into tears multiple times. I watch them like a hawk but Levi’s violence is so fast!

I want to encourage their brotherly bond, but also let Malachi know that he has a voice and can communicate to me when he is no longer enjoying the interaction.

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I am constantly asking Malachi if he is happy or sad about Levi’s rough play and the majority of the time he tells me “happy” with his signs, but every now and then he gives me a firm “sad” sign and I pull Levi away. They really do love each other so much! Levi means well….mostly.

The high school boys soccer team we coach ended their season on Thursday so our schedule frees up tremendously for a bit. The temps have been getting more and more intense making it difficult for me to justify taking the kids out to the games.

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Here is Levi with one of our other coaches, Tanner. He is Levi’s best bud and one of the only people Levi will willingly go to.

Okay, now on to the big surgery reports.

Levi and I hit the road around 4:30 on Friday morning (after checking for our bear friend of course) and headed down to Chattanooga to check in. We decided it was best for Jake to stay home with Malachi to cut down on some of the chaos. Levi was the first surgery of the day with an operating room time of 8:00. Since we were pairing two surgeries into one operating room we were top of the list.

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Even though we have done this dozens of times, this time around was a little different experience since he is more mobile and more aware. He was his normal, wild self getting into everything within his reach. It was all fun and games until I made him change into his hospital gown.

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And then the eye surgeon marked on the operative eye which he did not enjoy.

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We jumped through all of the pre-surgery hoops- meeting with anesthesia, both surgeons, operating room nurses, and several others. Then the dreaded hand off moment came. We were able to send some “silly juice” into his tube that helped keep him a bit calmer since he is having separation anxiety issues, and with that on board he happily went with the nurses. For most of Levi’s other surgeries I have carried him back to the operating room so this was a different transition for me to deal with.

Levi had his right eye operated on, peeling back the outer layer and manipulating the muscles to get the eye more centered instead of gravitating inward. We will likely have to do the same thing to his other eye as well, but our hope is that his brain will like what it sees and start to correct automatically without any other interventions.

Here is a photo progression of the last few days.

Surgery Day (right out of recovery):

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Later that afternoon:

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The evening of surgery day:

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Saturday:

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And finally, today:

It progressively got worse but now is starting to look a little better. We have to put an ointment in it each night and keep him from touching it, which is an enormous challenge.

The eye surgery went as planned and we will be following up with the surgeon in about two weeks. It can take the brain up to 3 month to adjust to the changes so we won’t be able to call the surgery a success or a failure for several weeks.

Levi also had a bronchoscopy (throat scope with a flexible tube down his nose, hence the runny nose in the pics). In order to tell how the vocal cords are moving he can’t be completely under so they do a lighter sedation during that procedure.

The surgeon came in and gave us the amazing news that Levi’s vocal cords are moving!! This is HUGE! Backstory in case you are new to the blog…

Levi was born with idiopathic (which means unexplained) bilateral (means both) vocal cords paralysis (meaning his vocal cords don’t move). This is an extremely rare diagnosis, some sites stating that it happens to approximately one in a million children. This was the first case of idiopathic BVCP for our Chattanooga ENT. There was a 50% chance the brain would wake them up by the time he turned five.

We have been treating Levi as though his cords will never wake up, so I was absolutely thrilled to hear that he saw movement!

In my head, if the vocal cords woke up life would go back to normal for Levi! But I am learning that it is a little more complicated than that. The cords are moving, but we aren’t confident that they are moving like a typical persons. He is still having a pretty loud stridor (wheeze) when he gets worked up and still requires 1/2 liter of oxygen at night so there is still something complicated going on in that airway of his.

BUT as you can imagine, this is a huge step in the right direction! Based on this information we will now be pursuing a swallow study to see if it is safe for him to drink liquids, with the goal being to get him completely off his g-tube. Once the tube goes unused for 6 months it can be removed permanently.

We will also be setting up an oxygen study to see how low we can go at night to keep him safe.

Tomorrow I will be calling Cincinnati to set up an appointment. They will likely want to see it for themselves, meaning another procedure up north but I am excited to share the news with them. This really is an answer to our prayer.

Alright, raw emotion time.

This week has been very difficult for me. I have to fight hard against my emotions on surgery days, as crying drains me of any tiny inkling of energy I might still have left. I was running on under four hours of sleep and could feel the breakdown coming, each time talking myself out of it.

Have you ever had zero desire to do something? It is like looking down a dark path that you are 100% sure will lead to pain and suffering for your child. No part of you wants to step foot on that path. Everything inside of you is telling you to run away from that path. But again and again…37 stinking times…. I scoop up my unsuspecting, beautiful children and carry them down that dark path towards the pain and suffering. They allow themselves to be carried, still smiling, trusting that mom will protect them from discomfort. But the reality is that as much as I desire to, I simply can’t. I kiss their sweet foreheads one more time and watch them get closer and closer to the pain until it strikes them leaving it’s mark. And after the pain hits all I can do is hold them tight and reassure them I won’t let it happen again, which is a complete lie.

I have to let it happen again, and again, and again. I am plagued with so much guilt for the part I play in their necessary pain.

I shouldn’t have a “surgery shirt”. A dark shirt that hides the post-op blood that my boys inevitably pour on me as I desperately try to comfort them in the recovery room.

I shouldn’t have a hospital backpack- something I splurged on last year. My splurges should be pedicures and purses like other moms my age. And I shouldn’t have to pack that bag for an unexpected hospital stay, something previous surgeries have trained me to plan for.

I shouldn’t have a “night before surgery” routine of clipping my fingernails so I don’t self mutilate my fingers during surgery.

I shouldn’t be able to walk blindfolded to the recovery room. Or know where the bathroom is without asking. Or even know when the best time to take a restroom break is so you don’t miss surgery updates.

I shouldn’t be recognized and called by name by the anesthesiologist.

I shouldn’t be glad that this is just an outpatient surgery. I should be like all the other moms waiting with their children in pre-op…terrified and nauseous, not sure what is about to take place.

I shouldn’t have to avoid the foods I love on surgery days, worried that the emotions of the day will attach themselves to that food putting it on my “never again” list.

I shouldn’t be able to tell you the exact room and chair I sat in for each of my sons life saving surgeries.

I shouldn’t know these things.

These negative thoughts could end here, and I would be totally justified in having them. But there is a light inside me that reminds me not to dwell in the darkness. So I will step back out of the emotional shadows I have allowed myself to gravitate towards and pursue joy, as elusive as it may be sometimes. Yes, crazy, inexplicable, unwarranted joy.

It is in these dark moments that even our emotions can reflect the light of hope that is within us.

As I thought about these emotions this week I couldn’t help but think about Jesus in the Garden of Gethsemane. This story appears in all four of the gospels and I like each account for different reasons. But for tonight I want to share Mark’s account with you from Mark 14.

33 And He took with Him Peter and James and John, and began to be very distressed and troubled.34 And He said to them, “My soul is deeply grieved to the point of death; remain here and keep watch.” 35 And He went a little beyond them, and fell to the ground and began to pray that if it were possible, the hour might pass Him by. 36 And He was saying, “Abba! Father! All things are possible for You; remove this cup from Me; yet not what I will, but what You will.”

I talked about staring down that dark path that you know leads to pain and suffering. Christ faced a dark path that He knew would lead to a morbid and painful undeserved death. My dread and agony was a tiny little fraction of what Christ was dealing with that night, so don’t think I am bold enough to compare my trials to the one that he faced. But there are so many things in this passage that my heart relates and clings to.

“My soul is deeply grieved…”   Oh what a perfect description for the turmoil that my heart experiences for my children. It is a deep mourning that takes place, knowing that there is nothing I can do to prevent their suffering in this life.

“All things are possible for you; remove this cup from Me…”   As difficult as the last six years have been, it has never shaken our faith and belief in God. I know that God is able to remove my cup at any moment. But like Christ, I also recognize that the cup in my hand has come from God. And there is a reason He has handed me this cup and compelled me to carry it.

Then there is the single word, “remove”. I acknowledge this cup God has given me and as painful as it may be I will continue to carry it boldly, believing that this is what God has called me to do. Do I have the ability to throw the cup in anger, or ignore the purpose that He has placed this cup so delicately in my hands? In a sense, yes. But until God REMOVES this cup, I will continue to bear it even when it causes me such heart-wrenching pain. I choose to continue to believe that the cup, while painful, is serving a much greater purpose that I cannot see. And it is God’s job to remove it, not mine.

“Yet not what I will, but what you will.”    Ugh. This is hard to verbalize to God and actually mean it. I want to insist that God heal my boys. I want to bargain, beg, and plead that He transform them miraculously…and I believe that it pleases God to continue to hear me believe in and ask for the impossible. But like Christ did I must acknowledge that God’s will supersedes the picturesque one I have created in my mind. And life Christ, I must remember to continually pray that God’s will is the thing that I truly desire.

This life is a challenging one, and weeks like this one are brutal reminders of that point. The emotions of this week have left me physically weak and emotionally fragile. But it is in this dizzy state that I have to focus my eyes on God instead of looking down at the waves lapping at my ankles.

Please continue to pray for answered prayers for my boys. And pray for rejuvenation this week for my nerves. And if I haven’t said it lately, thank you for continuing to cover our family in prayer.

Much love,

Leah