Delayed Miracles

On Monday we celebrated Malachi! He was giggling the second he woke up and clearly knew that is was his special day. I dug out his birthday shirt from last year and his favorite monster pants and he was ready to go!

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We had a jam packed Monday but I wanted to make sure we made it special for Malachi. After his physical therapy session we headed to the grocery store and I let Malachi pick out a giant balloon. Of course he chose Paw Patrol and giggled with anticipation as they inflated it for him. Levi is going through a phase where balloons scare him, which Malachi is very aware of and uses it to make him shriek and cry. We then went over to the bakery section and let him choose some cupcakes for us to share that night when Jake got home.

We put candles on his cupcake for the first time and turned the lights down so he could see them.

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And then he flipped the entire cupcake over with his excitement.

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We had one big cupcake left over and I decided to save it for feeding therapy the next day as I knew it would motivate Malachi! The boy’s feeding therapist is very animated and knows how to motivate Malachi; he always tells Malachi to use his “dinosaur teeth” to chew food. We were working at him eating him cupcake and Malachi crunched so hard onto the plastic spoon that it cracked. He froze and I watched a look of fascination come over him that he made such a loud noise with his bite. And naturally, he decided to bite down even harder, shattering the plastic spoon into pieces. I swiped his mouth with my finger as fast as possible but didn’t get it all before he took a big gulp, swallowing a big plastic chunk. Oops!!

So far he is okay but I have been watching him like a hawk. Levi did some major damage on the rest of that cupcake!

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On Tuesday and Wednesday Malachi went to school for a few hours. His class has been somewhat healthy lately so we decided to let him go!

Wednesday Malachi got to ride his horse and had the best session he has ever had. Even when it was over he was a bundle of energy. I love seeing him so happy.

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Our adventurous week continued on Thursday when Malachi and Levi got to take a “Thank You” cookie cake to the robotics and mechatronics class that adapted Malachi’s Wild Raptor for him. While we were there the boys got to see some of the robots the class is working on. We also left the Wild Raptor there so the crew can work on the step by step tutorial they are making so that other special needs families can have the info.

 

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Friday we made a trip down to the hospital for Levi’s synagis medication shot. These shots are extremely painful as the medication burns going in. It is always a miserable experience but we are grateful insurance deemed him worthy enough to get them this season. The shots are nearly $9,000 per season! He will get his final one in March, and we will be pushing for him to get approved next year as well.

We have thankfully stayed pretty healthy this season but on Thursday Jake came home with a cold. Friday night Levi started vomiting once an hour. For a typical kid you would assume it was a stomach bug, but with Levi even the slightest drainage dripping near his airway triggers his gag reflex. So we watched and waited to see what it was going to turn to. Around 1:30 in the morning he spiked a fever of 102.6 and I started to get worried. I cranked up his oxygen and gave him some fever reducers and he fell asleep laying on the living room tile floor. We were up and down most of the night with him vomiting pretty consistently but by Saturday morning the fever was gone and the vomiting slowed down.

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It never really turned into anything else and Malachi and I avoided contracting anything!  But it was a pretty sleepless weekend in our house between sick Jake and sick Levi.

My niece and nephew had a birthday party on Saturday that Malachi had really been looking forward to so he and I left the sickies at home and headed to the party. We talked on the way there about how there would be a bouncy house, cake, and lots of kids his age and Malachi was grinning with excitement. The party was inside a gym and when we got there I could tell that all of the noises (especially the loud blower on the bouncy house) were difficult for him to process. I tried to distract him by talking about the dinosaur cake but after 30 minutes he started to uncontrollably cry, something he does when he gets overwhelmed. I asked him if he wanted to leave and he didn’t answer me- which told me he really didn’t want to leave.

He put on a brave face but it only lasted 5 more minutes and he started sobbing again. When I asked him again if he wanted to leave he signed a sad little “yes”. It broke my heart to see him struggle…he clearly wanted to stay but his brain just couldn’t handle it. We didn’t stay long enough for cake so after I loaded him into the car I took him to the cupcake shop down the road and let him pick one out.

Oh sweet little Malachi. I made it through the whole birthday without shedding a tear, but this picture popped up in my Facebook Timehop a few days later and it did me in.

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Flashing back to those fragile days just overwhelmed my heart. Malachi and I still hold hands every night as he goes to sleep.

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What a journey it has been.

Sometimes I spiritually get into valleys and I forget to continue to pray for the big miracles. I look at Malachi and I want to see a healed child..but then I realize the monumental nature of my request. So I transition from praying for BIG miracles to praying for small baby step ones. Like praying that Malachi will be able to speak coherently. Or that his seizures will stop completely. Or that he will be able to hold his head up for long periods of time.

But then I always feel conviction over than mindset, almost as if my lack of verbalizing the big miracles is questioning God’s power and abilities. This week I am back on that mountaintop and praying for the big healings for both of my boys.

A story from the Bible keeps coming to mind. In Daniel 10 he describes a vision that he had of an angel.

10 A hand touched me and set me trembling on my hands and knees.11 He said, “Daniel, you who are highly esteemed, consider carefully the words I am about to speak to you, and stand up, for I have now been sent to you.” And when he said this to me, I stood up trembling.

12 Then he continued, “Do not be afraid, Daniel. Since the first day that you set your mind to gain understanding and to humble yourself before your God, your words were heard, and I have come in response to them.13 But the prince of the Persian kingdom resisted me twenty-one days. Then Michael, one of the chief princes, came to help me, because I was detained there with the king of Persia.

Like me, Daniel had petitioned God for a huge request and as this angel said, he had been sent by God the same day as that prayer. But due to some spiritual warfare the angel was delayed from making it to Daniel.

This week I have found myself pondering if maybe there is some major spiritual warfare going on right now that is delaying the answers to my prayers. But I am finding comfort in knowing that God’s will always wins. While the devil may delay, God always wins.

So I will continue praying for the big miracles. The unfathomable. The unlikely. Because my God can do “immeasurably more than all we ask or imagine” (Ephesians 3:20).

And a random side note- I stumbled upon a support group for Levi’s diagnosis! This is HUGE! Some statistics quote that in the United States, bilateral vocal cord paralysis happens in 1 out of every 1 million births. Connecting with other moms who can answer questions for me has been a blessing.

Based on what I have learned so far, I am absolutely positive we made the right decision for Levi in trying to avoid the trach. I have also learned that we are blessed that Levi has a voice…not many kids with BVCP are able to speak above a whisper.

Please join me in praying for big miracles this week. That Levi’s vocal cords wake up and start functioning as they should. That Malachi would walk on this earth and proclaim the glory of God in his own words. You know…the BIG stuff!!

Love,

Leah

 

Malachi is 6!

This week we were pleasantly surprised by two bonus snow days with dad! Snow days are always nice from a medical standpoint as they give me a guilt-free cancellation for therapies. The monotony of our weeks can get old so justified reasons to skip are always welcomed!

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We live in a very mountainous area of Tennessee and since heavy snow is rare, the roads are not treated like they are in the north. It is always highly recommended by news stations that if you don’t need to be out then stay home! We loved the suggestion and spent the day tucked in the house as a family. Jake and I even tackled another escape room and finished in an hour and a half! Progress haha.

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A friend took this photo from on top of one of the local mountains and I thought it was beautiful enough to be blog worthy.

Our miracle Malachi turns 6 years old tomorrow (Monday)! He is very aware of birthdays and is really looking forward to the day. We have a jam packed Monday so we decided to celebrate on Saturday. We took the boys to see the new Mary Poppins movie and thankfully we had the theater all to ourselves. It was Levi’s first movie and he did about as well as can be expected for a one year old. Malachi on the hand loved the experience. We sat in the handicap seats which are close to the screen and he tried very hard to watch most of the movie. Since he can’t see well I try to narrate things to him and he was very into any of the action scenes.

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He received some birthday money from some family members so we asked him if he would like to go pick out a birthday present. His eyes lit up and he eagerly signed YES so off to the store we went. We walked through all of the toys, books, and movies asking Malachi about different things we thought might interest him. He genuinely loved the experience and was so focused on picking out toys.

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We narrowed it down to a little kid dinosaur educational toy and a big boy scary dinosaur that roars when it is motion activated. He thought long and hard and finally signed NO for the educational dino and a big YES for the big boy one. He also picked out two new Paw Patrol movies. I think the excitement of shopping for the toys was even greater than the gifts themselves.

Sometimes I forget how aware and intelligent Malachi is, and moments like our shopping trip remind me of how typical Malachi is. He has some strong opinions, a big imagination, and such a sweet heart.

And I was reminded this week of his ability to be a master manipulator. The boys go to work each week with me (Mondays, Wednesdays, Fridays) and Levi insists on sitting in the big chair with Malachi. They were playing so sweetly I got out my camera to take a few pics and caught this hilarious sequence of events.

Picture 1- Levi was playing gently and everyone was happy.

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Picture 2- Levi pulled Malachi’s hair before I could stop him, and it made Malachi start to cry. Levi recognized that he hurt Malachi’s feelings and hugged him.

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Picture 3- Malachi realized that Levi would hug him when he cried and loved his new power over Levi.

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Picture 4- Levi checked to see if Malachi was still crying and Malachi tried to pretend like he was still a little sad (but was definitely fine).

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We have been tackling some big changes with Levi this week. Since Levi came home from the NICU he has slept next to me in his Rock N’ Play. It has a self rocking feature and plays music, but the best feature is that it is inclined (for his reflux). It has always brought me peace of mind as it keeps him tucked in a safe, cord managed position.

But when he sleeps flat he is much quieter with his breathing. He has a sleep study next month and we want to set him up for as much success as possible so we broke out the pack and play. It has proven to be quite the challenge, most nights this week ending in stand offs with him sitting up and staring at me while saying  “momma” over and over again. But each night takes less time than the last so we are making progress.

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The cord management stresses me out so I don’t feel comfortable falling asleep until he is completely asleep. I have been running it through his onesies to keep it from getting wrapped around his neck but he sleeps with three wires attached to him and lots of possibilities for danger.

He has been working on a new smile. And getting into EVERYTHING he can get his hands on or in.

The trauma of Malachi’s birth is still a struggle for me, but this birthday is proving to be exceptionally more difficult for me than normal. It was shortly after kickoff on Superbowl Sunday when I headed to the hospital with Jake, not realizing that my son would be born that night. Scenes from that night play over and over again on my head on repeat, especially with today being eerily similar to that Superbowl Sunday.

This photo was taken the night before Malachi was born. I was 24 weeks along.

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I know that many of you have been with me from the beginning and could likely tell the story of that night as best as I can, but the therapy of writing these blogs helps me through tough nights like this one, so just bear with me.

There was so much confusion. So many tests. So many questions. Malachi’s heart rate was being monitored and he was still doing just fine.

Then in an instant everything changed. My doctor walked around to the right side of my bed and reached out to hold my hand. I remember all of the false confidence I was storing up poured right out of me as I watched his eyes while he spoke. He explained that he thought I had a placental abruption and that I needed to be transferred to a hospital with a higher level NICU. He explained that Malachi was going to have to be born that night…words I never saw coming. I said “But he is too little…will he live?” And the doctor squeezed my hand a little tighter and said “If he survives the delivery there is a 50% chance he will survive. But we need to get you to the hospital downtown immediately.”

I was loaded onto an ambulance, Jake followed behind in the car, and a team was ready for me when we arrived. So many medical professionals were gathered in the room and started trying to figure out why I wasn’t showing the clinical signs of an abruption (bleeding).

And that is when it happened….Malachi’s heart suddenly stopped beating. The doctor attempted to move the bands around to find the heartbeat but after several failed attempts she said “Try it one more time.” I could sense the tension in the room rise and got a sick feeling in my stomach. After a few more seconds she said in a loud commanding voice “GO GO GO” and in an instant all the cords were pulled from the wall behind me and we raced out the door.

The clock above the door showed it was almost midnight. Malachi was born just 4 minutes later via emergency c-section. I will never forget the look on Jake’s face as we locked eyes one last time as I left the room.

We raced down the hall at a full sprint and I watched the ceiling tiles fly above me. The words from Job played in my mind and I prayed “The Lord giveth, the Lord taketh away, blessed be the name of the Lord.” Over and over again I prayed these words.

We made it into an operating room. Everyone was so busy prepping that they asked me to slide myself onto the operating room table and stretch out my arms. The doctor visibly chose where to make her incision and picked up the scalpel. She said “Ready to cut!” and started to bring it down towards my stomach. I spoke up and said “I will do my best to stay still but I can’t promise I won’t move…” and she screamed “Somebody knock her out!!”.

A nurse ran over with an oxygen mask and her final words before I blacked out were “You need to breathe this in as fast as you can…your baby’s not breathing.”

I woke up in a small room with a nurse by my side. She went and got Jake and I remember trying to make eye contact with him as he walked into the room, desperate to find out the outcome of Malachi’s birth without having to speak of it. Jake was fighting back emotion and stared at the floor tiles as he walked over, and my heart sank. I asked “Is he alive?” and Jake nodded yes. But his body language told me I shouldn’t ask any more questions, as my heart might not be ready to handle the answers to them.

Malachi’s birth was a result of a placental abruption that had been internally bleeding for several days, unbeknownst to me. We had even been to the doctor for a regular baby checkup the Thursday before and everything looked great. The doctor always boasted “You are the healthiest pregnant woman in my practice.” An honor I always wore proudly. I drank all the water, ate all the vegetables, and followed all the rules.

The massive blood clot that was discovered during that emergency c-section almost took my life as I lost a significant amount of blood. I was in the hospital for several days receiving blood transfusions and trying to heal from a very quick and aggressive vertical c-section. Malachi was born without a heartbeat and required 15 minutes of CPR on his 1 pound 12 ounce body. He was taken to the NICU, wheeled past Jake for a brief few seconds. I didn’t get to lay eyes on my firstborn for three long days. The pain of those days is something that I will never ever forget.

Early the next morning I asked one of my nurses how Malachi was doing, desperate to hear a good report. She replied “It doesn’t look good.” and left the room. I processed the thought that I may never get to meet my own child on this earth. And it broke my heart. Every time the door opened I braced, assuming they were coming to tell me that my son had died.

The ups and downs from his 4 month NICU stay were overwhelming and strengthened my faith in so many powerful ways. We learned during those hard times full of bad news to rely on God’s strength to carry us. I realized that the control I thought I had over my life was simply an illusion and that I needed to rest in the will of God.

Every day since that night has been a challenge, a test of my faith. Through Malachi I have learned what hope truly looks like. We have known disappointment, we have known true fear, we have known what it is like to pray that your son lives to see just one more day. We have believed in miracles, mourned over not getting them, and then chosen to believe in them yet again.

We have learned that God’s grace is amazing. And how generously He wants to give it to us. We have learned how important a RELATIONSHIP with God is. Not just knowing who He is or what He can do. We have learned to experience God.

I share this poem every year on Malachi’s birthday; it is something I wrote for him a few years ago and it helps me refocus as I fight through all of the hard memories that keep themselves stored in my head and heart from that night.

It was a breathtaking day in heaven as the father summoned the Son.
He wanted to tell him firsthand about something wonderful he had done. 
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth. 
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways. 
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord. 
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind. 
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace. 
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.

 

It is just after midnight and the birthday boy and I are watching Bubble Guppies while he tries to fall asleep. He likes to listen to the keyboard while I blog on Sunday nights. I just leaned over and whispered “Happy Birthday” in his little 6 year old ear and the joy on his face brought tears to my eyes. What a blessing this boy is in our lives.

On this birthday we will choose to find all of the joy and continue to fight against my nature to focus on memories. I will let my heart mourn in private when it needs to mourn, but I want Malachi to experience joy today….the same joy that heaven experienced on that special night he was born. I am confident he spent some time in the throne room of God that night, being comforted by the angels as earthly hands brought him back to this earth.

Our life is a uniquely beautiful one. Thank you for giving me the chance to share it with each of you.

Much love,

Leah

If I Knew Then…

There are weeks that I feel overwhelmingly blessed by God…this week has been one of those weeks!

 

Aside from some temperature regulation issues with Malachi both of the boys have been healthy and happy. Jake had the day off on Monday so we did what we typically do on slower days- take the boys into town. I know that sounds very “Little House on the Prairie” but it is a thirty minute drive to the nearest big town so to us it is a big adventure. Jake and I received several gift cards over the holidays so it doesn’t take much prodding for us to head into town for a nice meal together! The boys both absolutely love any adventure outside of the house and I don’t have to cook so it is a win-win for everyone. I am also able to run quick errands into stores without having to unpack the wheelchairs, strollers, and children.

Tuesday was a rookie “tubie mom” catastrophe day. It was a long day of appointments so I packed enough gear and food to get the boys through 7pm that night. We made the one hour drive to Malachi’s orthotics guy to pick up his new AFOs and on the drive I noticed a faint smell of formula. Levi had spit up in his car seat a few days before so I assumed it was a leftover stench and tried to ignore it. But then I saw it…his feed bag had tipped over in the front seat and spilled 12 hours worth of formula into the cloth seat. Aside from the obvious mess there was also the issue that he now didn’t have any food for our jam packed appointment day.

We made the hour drive all the way back home to refill his feed bag, clean the front seat, and repack the bag of spare clothes that came into contact with the mess. Then we had just enough time to race 45 minutes away for the next set of appointments. I am waiting for a hot day to tell me whether or not I got all the formula out of the seat…cross your fingers for me.

Here is a photo of Malachi’s new orthotics. Not a huge fan of the white but he definitely wanted the Superman ones so we are going to make it work.

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Our boy was a rockstar this week on his horse! We are still making our list of pros and cons on the Epidiolex and use therapist input to help us see the changes. His PT is worried about his decrease in head control but his hippotherapist was thrilled with how vocal and interactive he was on the horse this week. This sweet photo popped up in my Facebook this week (it is from 3 years ago):

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Jake celebrated a birthday this week- it is hard in our world to take the time to celebrate us. The boys and I ordered him a giant cookie cake and bought him an escape room game for us to play at the house. The goal is to solve the codes in 60 minutes….it took us 150 minutes to solve the “easy” one but we enjoyed the challenge haha.

Levi is starting to grow a pretty legit head of hair!

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He is getting stronger day by day. He is still not crawling but he is so close! We head back to the eye doctor this week to talk about surgery.

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Malachi celebrates his 6th birthday next week so we are brainstorming ways to celebrate. Last year we were in the Ronald House in Cincinnati and we didn’t get the chance to celebrate him like we wanted. It doesn’t take much to bring a smile to his face but we want to do something special. I wish you could have seen Malachi’s face this week when he got a balloon from the grocery store- uncontrollable giggling! And for the record, Levi is going through a “scared of balloons” phase haha.

I have been hit this week with waves of nausea as I have read news headlines about New York’s Reproductive Health Act.

Section 2 of the bill creates a new Article 25-A of the Public Health
Law (PHL), which states that an abortion May be performed by a
licensed, certified, or authorized practitioner within 24 weeks from
the commencement of pregnancy, or there is an absence of fetal
viability, or at any time when necessary to protect a patient's life
or health.

Much of this bill is not new information. The concept of abortion absolutely goes against my beliefs and has always made me sick to my stomach, but seeing it be celebrated has brought a whole new level of sadness. As you already know, Malachi was born unexpectedly at 24 weeks gestation…a point in the pregnancy that he could have been legally aborted.

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During the emergency c-section I lost 1.5 liters of blood and almost lost my own life. It was a traumatic birth and a day that will forever be burned into my heart and mind.

If I knew then what I know now…

That my son would be severely disabled.

That I would never sleep a full night again.

That the feeling of helplessness and defeat would overwhelm me daily.

That Malachi will grow into an adult that still wears diapers.

That the probability of me burying my child is overwhelmingly high.

That the mental, physical, and emotional toll this life takes on my body is almost too much to bear.

That the weight of parenting a special needs child takes a toll on marriage.

That life would never be what I dreamed it would and riddled with disappointments and unmet expectations.

…I would absolutely do it all over again. Without hesitation, without regret.

Malachi is God’s child. And God designed him for this earth.

Abortion is not God’s plan. And the pain my heart feels as I watch these celebrations over unspeakable evils is just a tiny fraction to the sadness God must carry over our fallen world.

2 Peter 2:11-12 “Dear friends, I urge you, as aliens and strangers in the world, to abstain from sinful desires, which wage against your soul. Live such good lives among the pagans that, though they accuse you of doing wrong, they may see your good deeds and glorify God on the day he visits us.”

I am finding so much comfort in this verse as it reminds me that we are aliens and strangers in this world. This is simply a temporary place we are passing through, with our end destination routed for an eternal life with God. This world that we are in is riddled and plagued with sin and darkness…but this is not what we were made for.

So what are we called to do in this temporary life in a fallen world? “Live such good lives among the pagans that, though they accuse you of doing wrong, they may see your good deeds and glorify God…”

We are to speak through our actions. We are to be different. Self-denying. Living for His glory instead of our own. We are to live counter-culturally.

Romans 12:2 “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”

 I have been praying that God would unfold more of His calling on my life and lead me to the opportunities to pursue it. I feel that God has given our family a testimony that is meant to be shared, as our lives have stamps of God’s glory written all over them.

This almost feels narcissistic to type but if you ever need a special speaker for your Bible study or event please let me know- I am not an excellent public speaker but would love to allow God to use me as a mouthpiece to share our story with your group. I feel like God is opening a new door for me to pursue so I am walking forward in obedience. Contact me at: jacobandleah@gmail.com

Thank you for being faithful in prayer for our family. We have felt so loved this week by random acts of kindness from strangers, an avenue we know God uses to remind us of His provisions. We are blessed so much more than we deserve. God is good.

Much love,

Leah

 

 

 

 

Dear Tooth Fairy…

Well ladies and gentlemen, Malachi lost a tooth. It was there when we put him to bed and nowhere to be found by 3am when he got up, so we are assuming he swallowed it.

When I noticed it was gone I asked Malachi “Did you lose a tooth?” and his face grew very concerned as he processed my question. I explained to him that when baby boys grow up into big boys their teeth get loose and they fall out to make room for “man teeth” like daddy’s. He really liked hearing that and was so proud.

When we went back into the bedroom around 4:30 he was trying his best to wake up Jake with his sweet little hand to tell him about the tooth. I woke Jake up so Malachi could share the news and we made sure to tell all of his church friends about it this morning.

I also explained to Malachi that some kids believe in something called the tooth fairy, but that she is just pretend. I asked him if he wanted to put a note under his pillow tonight and see if there was a surprise in the morning and he signed “yes, yes”. So tonight we wrote a note!

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The concentration on his face in this picture makes me smile.

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And formally signing his name…

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Let me explain a bit here. As you are surely aware by now Jake and I believe in God! We just simply can’t deny God’s existence, power, and love after witnessing all that He has done in our lives, especially over the last 5 years.

Because of that, we are very cautious to present any imaginary characters as “real” to our boys, especially Malachi. We want him to know about pretend vs real, but never have any confusions about the realness of God. So we don’t do the Santa thing, Easter Bunny, or Tooth Fairy. But we do explain that some people like to pretend just to be silly.

Speaking of imaginations we let him listen to Jurassic Park last night, fast forwarding through the scariest parts. Oh my, he was so into it! Especially the t-rex scenes.

A few more Malachi updates: his neurological fever came back again Friday night. He went from a completely normal temp to 101 within an hour. We stripped him down and it started to drop slowly then took him to hypothermic (96 degrees) by midnight. We bundled him back up and put him under the covers with me and his body finally leveled out within 24 hours.

I get so anxious when these random fevers hit, always wondering in the back of my mind if this will be the sickness that takes him to heaven. That may sound dramatic and over the top to you, but it is a possible reality for me. This is the time of year that I see death after death of children like Malachi in my support groups. It always starts out as something simple like a cold and things spiral downwards very fast.

Our local schools closed on Friday due to sickness and several kids and teachers in Malachi’s class at school have the flu. I am so thankful that I haven’t sent him in over a week and a half!

Malachi got a new toy this week as an early birthday gift from his grandpa and grandma. It is a switch adapted toy where three little penguins continuously climb a set of stairs and one by one slide down the slide. It makes lots of fun noises. We have been trying to use it as a teaching tool for Malachi as there are 10 stairs. We will give him a number to stop on, like 5 steps and he is pretty good at controlling it! He knows his numbers/counting much better than we realized!

And then there is Levi. Wild as ever and NEVER STOPS MOVING!!!

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Levi has been working hard these last few weeks at eating. I remember talking about the g-tube in the NICU and saying “As soon as I get him home we will teach him how to eat in no time.” We felt confident at the time of that statement that he was not aspirating so I felt confident in pushing him. But then we did the rib graft and popped his airway open a bit more. My confidence level in him protecting his airway has been compromised and we don’t want to do anything that might cause him to aspirate. It just isn’t a battle worth fighting hard for right now.

But we want him to be able to handle food from a sensory standpoint so we are working hard in feeding therapy with both boys. Levi has a major control issue so as long as he is in charge of the food source he will tolerate it for a few seconds. He still needs some major convincing before he will put anything in his mouth, but we are making progress. This jello picture was a rare and wonderful moment of bravery on Levi’s part.

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Levi is turning into quite the momma’s boy.

But he sure does love his daddy. This week while Jake was at school Levi called his name over and over again. I thought Jake would enjoy hearing it so I took this short video:

We were pretty non-stop this week taking each day hour by hour. On Tuesday we had a soccer banquet to honor our girl’s achievements this season. It was a wonderful chance to speak some life into these young ladies.

I normally try not to put pictures of others in the blog, but I made an exception tonight for our beautiful MVP for the season…her dad and aunt read the blog each week and I figured they wouldn’t mind 🙂

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Jake and I overexert ourselves quite often. But we never do anything that we don’t feel like God is calling us to do. And we truly believe that God won’t call us to something without giving us the strength and ability to do it. Our plates are more full than most, but it also gives us a greater opportunity to practice fully relying on God like the Bible calls us to do. While we love coaching soccer, we also feel that it is something we are called to do. There are so many young teens in our community that don’t get the chance to encounter Jesus, and if we can plant a seed in their hearts then it is worth all the extra stress and energy.

I have my times of doubt, and even had one this week. Anytime you enter a competitive realm you see sides of people that you may not have ever seen. Each season we are cursed at by parents, berated, and gossiped about. Our reputation, motives, and decisions are always called into question. One of our main coaching goals each season is to build the self-esteem and confidence of each of our players…to be accused of tearing them down is hard to listen to.

I ran into a parent this week and the encounter was so tense it made me sick to my stomach. 99% of the time these emotions that we receive are based on false ideas and rumors but being on the receiving end of all the negativity can be stifling. It is always a difficult pill to swallow when people choose to believe things that go against your character.

After I left the presence of this parent I got in my car and prayed. We have always said that the moment our coaching interferes with our ability to witness to others we need to step away. I thought to myself, “Is now the time?” The next night we had our banquet and I felt the presence of God as Jake and I spoke about each of the girls. As I listened to Jake speak I heard the love of Christ- even though he didn’t mention a single word about God.

As Christians, our desire isn’t to push our beliefs on anyone. Our desire is simply to reflect the light of God to the world. It isn’t our job to change, convert, or convict anyone. That is never a command from God. But we are called to “let your light (God’s presence within us) shine before others, that they may see your good deeds and glorify your Father in heaven.” Matthew 5:16

We don’t ever truly know what the effects of that light on these girls may ultimately be but for now we choose to obey God’s calling and coach.

We have been battling lots of spiritual attacks lately in the roles God has placed us in. Truthfully, it is disheartening and frustrating to be fighting such big battles amidst all the personal ones we have going on. As I prepared the children’s lesson this week I read a verse and it was the reminder I needed…

To set the scene, Moses had just led the children of Israel out of Egypt and they were camping by the Red Sea. They looked on the horizon and saw Pharoh’s army barreling down on them, and as you would expect they started to panic. Moses prayed to God then delivered these beautiful words:

“The Lord will fight for you; you need only to be still.” Exodus 14:14

I can apply this to soooo many areas of our lives right now. We feel that we have been strategically placed by God exactly where we are meant to be (parents to our special boys, coaches, youth pastors…) but we keep looking at the horizon and seeing armies poised to attack. The instinct to panic is strong.

But the truth is that when you are in the will of God there is a confidence in knowing that He will fight FOR you. You need only to be still and listen for directives from Him. There is NOTHING that the enemy can do to overpower you when you are walking in the will of God.

So this week I am going to continue to try to practice the ever-challenging art of being still, even amidst adversity. Being still brings Him more glory that my knee-jerk reactions could ever do. God, please help me to be still in the presence of my enemies.

Final note: This blog really spoke to me this week and addressed a lot of the comments we typically get about us being “super parents”, which is very far from the truth! We are just like every other decent parent, wanting to do everything in our power to give our kids a wonderful life! https://www.patheos.com/blogs/notalonespecialneedsparenting/2019/01/im-not-supermom/?fbclid=IwAR3vQCdPZljoTGEF0mxdEeaqyACJ4r-hVBuNVZZXPyGnYdFj9BnDLVyR75g

May God speak to you this week, and may you be still enough to hear Him!

Love,

Leah

Brotherly Love

This week has been filled with heartwarming brother moments, medical frustrations, and our typical weariness. Let’s start out with a feel good and talk about the brotherly love.

 

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There have been several times this week that I have felt my heart melt in ways I didn’t know were possible. Levi has become infatuated with Malachi and wants to be close to him at all times. The new chair at the office is just large enough for them to snuggle in and Levi is constantly trying to find his way in it to sit with Malachi. Every morning they sit and watch cartoons together or play with a toy.

Levi can’t always activate Malachi’s big boy toys like Malachi; when he gets frustrated by one he will reach over and grab Malachi’s hand and try to get him to show him how, which Malachi absolutely loves. It is so sweet getting to see Malachi be the big brother and to see Levi look to him for guidance. I wish the world could see Malachi through the eyes of Levi!

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Malachi treasures their cuddle time and will even give Levi kisses when they are cuddling. Here is a video:

Levi has been “kissing” Malachi back but doesn’t quite have the grasp of what a “normal kiss” is like- he mimics what Malachi is doing and licks Malachi’s forehead. Then he turns and smiles at me, so proud of his gesture.

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The pureness of their love has made me an emotional mess this week. But those are the type of things I will gladly give my emotions to.

Here is another sweet video of Malachi laughing at the cuddles:

We had a whole slew of appointments this week to navigate around. Dentist, Gastroenterology, feeding therapies, pulmonology, physical therapies….

Malachi has a loose tooth which is an interesting little adventure. He only has one real tooth- all the others have been whittled down and crowned due to lack of enamel. As soon as the loose tooth gets a little looser we will likely yank it to keep him from swallowing it/choking on it accidentally.

Here is a photo of him and daddy playing some soccer this week in his Wild Raptor!

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The GI visit for each of the boys went well and we have made some significant changes in each of their feeding regiments. As usual the doctors want Malachi to plump up a bit more. I have been trying so hard to help Malachi get through the tube anxiety and was able to do one pump feed every day this week.

Levi is one plump little one year old and looking more and more like a big boy these days. He is nearly 21 pounds and big brother is weighing in at 27 pounds.

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This week we tried some sensory play in some mac and cheese…it didn’t make it into his mouth but progress nonetheless.

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Levi also had a pulmonology appointment to get his synagis shot (medication that lessens the effects of RSV if he gets it). These appointments are extremely fast since we don’t have to see a doctor, it is administered by a nurse. The appointment was at the new outpatient center I was telling you about previously. We made the hour drive, checked in and watched our name like a hawk on the screen. One by one every other name disappeared from that screen yet ours remained. I thought “Surely they didn’t forget about us?” seeing as I was staring at the same screen they were.

But alas, we were forgotten once again. I know I have shared this with you before, but there are few things that make me more emotional than being forgotten at specialist appointments. It is so much work to get the boys loaded up and on time to doctors visits and seeing the efforts to respect their time not reciprocated does me in. It had been over an hour and both the boys were cranky, VERY stinky, and momma was emotionally fragile. I fought back tears during the 5 minute appointment feeling more isolated than ever before…even the medical professionals just don’t seem to get it…the difficult nature of our every day.

Of course, the emotions from that carried over into the rest of my week and put me in a dark place. And oh, how dangerous those dark places can be. Jake was gone for two days on a church retreat leaving me with my thoughts.

One of the biggest thought consumers these days has been what the future looks like for Jake and I. Someone posted this picture on Facebook this week and it overwhelmed me a bit.

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This picture portrays the natural route that many parents take. But our picture is meant to be a little different, and sometimes the unknown of that picture attaches itself to my thinking.

Will Malachi still be alive when we are old? And if so, how will we take care of him? We are physically already starting to feel the weight of his care. The idea of an organization having to take on his care when I am unable to makes me nauseous. But so does the idea of having to bury him as a child. I am sure you can see the helplessness of the thinking cycle I get stuck in.

Will we ever get to enjoy grandchildren? We have been recently told that Levi’s brain damage is likely more extensive than we realize. While I choose to believe that God will make his brain whole, there is that realistic side of me that wants to walk down the “what if” paths.

Faith has to be different for Jake and I.

I remember bringing Malachi home and thinking that he was going to be 100% healed, and that no one would believe how healthy and typical he was based on his medical history. We were simply waiting for our miracle, but we just knew it was coming any day.

We still firmly believe that God is able. And we know God can. But we have had to deal with the sadness over the differing timelines we seem to have with God. There have been times that has made me bitter. There have been times that has devastated me.

But these disappointments have transformed my faith. And it has reminded me that we are simply passing through this world, headed towards a more beautiful one.

I read a quote this week and it has played on repeat in my mind. While I find ways to apply it to my motherhood journey I feel that many of you will be able to do the same in your own ways.

“One of the biggest sources of conflict between you and your kids is when they refuse to bow down to your idols.” -Dan Allender

I had to recognize that “normalcy” for my children had become an idol. I find myself getting so angry each time Malachi has a massive seizure, or Levi has to be turned up on his oxygen. It is a reminder of failure and unanswered prayers. The disappointment that hits each time that state of perfection isn’t reached drives a wedge in my relationship with God.

So back to thinking about the boy’s future…that image of “what it should be like” I now recognize as an idol. When we start to think we can whine to God about what our life should be like, we are playing a dangerous game with our faith.

I am also working on releasing my idol of control. And could use some prayers specifically that I find peace in trusting God with the future of my family.

Please also pray for both of the boys. They are both having some intense coughing fits but no other signs or symptoms for now. We have another wild week ahead and can’t afford to add sickness to the mix!

Much love,

Leah

He’s In The Details

Another whirlwind week down in the books for the Carroll crew! Levi’s pulmonology appointment went decently on Monday and the doctor is still pleased at the direction his airway is going. His Cincinnati and Chattanooga specialists are both eager to take a look at his vocal cords to see if there is any new movement, but I am not in a rush to let them take a look. Either way we have bought some time as we have to wait until after his March sleep study results to come back.

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The hospital in Chattanooga recently opened an outpatient center and almost all of his specialists moved to the new building. It is so nice being able to be in an ER free setting for germ purposes, although they decided to put a general care office on the second floor of the building meaning we share elevators with sick kids. Ahhhh rats. But they have some pretty cool things for the kids to see while they wait.

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Tuesday we loaded up and made the drive to Nashville in preparation for Malachi’s Wednesday appointments. It is only a 3-4 hour drive but when you run on zero sleep all the time it is a dangerous situation to be in the car that long. Jake was able to make the trip with me and having some help/company made the trip actually enjoyable. And Malachi is always so happy to go on these road trips and stay the night in a hotel. He giggled uncontrollably for 30 minutes when we all laid down in the hotel bed…and again when he woke up and realized he was still at the hotel on an adventure.

We always try to jazz up our traveling appointment trips with something fun for the boys. We had talked to Malachi about a trip to the Aquarium restaurant but the weather wasn’t so bad so we presented the option to go to the zoo. Malachi signed YES YES about the new option so we bundled up and headed that direction.

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At the Nashville zoo they have a kangaroo enclosure with a walking path through it. The kangaroos come right up to you and you can touch them! Both of the boys really liked seeing the animals up close.

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After our zoo trip we headed over to the hospital to meet with Malachi’s orthopedic surgeon. Out of all of his surgeons, this one is probably our favorite! He shares our vision for Malachi’s life to be all about comfort and quality. We simply want Malachi to be happy and pain free. While we feel that right now he is pain free, we have to assume that his body will take the same route that most kids with his severity of cerebral palsy take and make plans for his future.

Malachi is likely to develop some very severe scoliosis which will make it difficult for him to breathe. Many kids like Malachi end up needing to have rods put into their backs  or spinal fusion surgeries. We also know that both of his hips are out of socket and there is a 50% chance that a big hip surgery is going to be needed. We want to work with both the orthopedic surgeon and the spinal surgeon to make sure we do those surgeries in the correct order. So we don’t have to do either of them more than once.

Hopefully these surgeries are a long ways away, and we are still praying that God preserves Malachi’s body and keeps him pain free!

The post-op part of the appointment went well and he is very pleased with how Malachi’s feet look post op. We will meet with them again in June to start making plans for any future surgeries.

Thursday Jake headed back to school. Malachi also went for a few hours on Thursday and Friday- he really enjoys going and seeing his friends but classroom sickness/germs has been keeping him away. His teachers and I communicate every day and they let me know when they think it is “safe enough” to send him. I am so grateful they are willing to work with us!

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When I dropped him off I couldn’t help but notice how much older he looks these days. He will be turning 6 years old in less than a month…crazy!

Malachi is doing so much better on his CBD oil. He is at the full recommended dosage and we are seeing some pretty big changes. Here is the breakdown:

  • He is having less seizures, having two small ones a day instead of his regular eight a day but they are short and not very severe.
  • He is wayyyyy more emotional than before, and the things that used to trigger seizures now trigger emotional breakdowns.
  • His thinking speed is much better than before and he is able to respond much more quickly to our questions with his signs.
  • He is now a chatterbox! This change has been bringing a smile to my face…I love hearing his voice.
  • His tone is much floppier than before, which means his tight muscles are relaxing on the CBD. This is good for his comfort and spasticity but he struggles to keep his head up.
  • His eyesight has improved a whole lot while on the CBD. We can tell by the way he is actively leaning forward to look at things, showing an interest in anything near him. This is a great change!
  • His brain is relaxed enough to allow him to sleep more. He is now sleeping 6 hours a night instead of his normal 4-5 broken hours and he is taking a nap each afternoon.

His teachers have definitely noticed the change in him and were pleasantly surprised by how well he is doing! It seems we are finally through the adjustment period his body needed to process the change. We are going to start talking to the epileptologist about decreasing his other seizure meds and eventually trying to get him off of one of the anti-convulsants.

This week is a doozy with 9 appointments in four days. We are hoping for a problem free, bad news free type of week.

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Jake and I are continually reminded of how blessed we are. It is undeniable how much God is holding us in the palm of His hand. Early on in our marriage time and time again God would meet our needs before we even knew we needed them. Or we would be conversing about how we needed a washer and a dryer and our phones would ring within the hour with someone asking us if we had a needed a washer and dryer set. We have learned to not believe in coincidences but instead to give credit to God for his providence in our lives.

This Christmas we were gifted some money from some very generous friends and family to go towards the boys care. We talked this week about things that would make Malachi’s life easier and the only thing we could come up with was another PPod chair. Everything in special needs land is insanely expensive and this particular special needs bean bag chair costs a little over $2,000. We applied for a grant earlier this year to get one and Malachi absolutely loves it. He sits very comfortably in it and can easily play independently with his toys.

The only problem is that now that I am working in the church office we need a supportive seat for him to sit in during my office hours. On Mondays I load up the PPod chair and on Fridays I take it back home so we can have it at home for the weekends. It is incredibly large and annoying to haul back and forth each week so Jake and I talked about the possibility of one day finding another one to leave in the office. Obviously paying retail is out of the question.

On Friday I just so happened to pull up Facebook marketplace, something I have never done before. And lo and behold there it was! Someone had JUST posted (an hour and a half before) this exact special needs bean bag seat for cheap and they were only an hour away.

After running through my germaphobe checklist it passed with flying colors (the mom selling is also a self-professed germaphobe) and I made the drive Saturday morning. The chair is the largest size they make so it is ridiculously massive and hot pink but it will work for keeping him comfortable while I am at work.

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God is so good to us- it always amazes me when I see how He loves to work in the details of our lives as much as the big things.

I started a new series with the children at church on Sunday mornings and we are covering Moses and the Israelites. I spend hours in the Word each week preparing for the youth and children’s lessons, continually praying that God will use me as His mouthpiece for what they need to know. Each and every week God is not only preparing me for the lessons He wants me to teach, but also teaching me things through those scriptures as well!

Today we covered the story of Moses and the burning bush. As I prepared the lesson I couldn’t help but relate to Moses on so many levels. God was asking Moses to do something that he truly did not want to do. He didn’t feel qualified, prepared, or eager to do the things God was asking of him. Been there, done that, got the t-shirt.

Exodus 4: 13  But Moses said, “Pardon your servant, Lord. Please send someone else.”

Oh what a relateable quotoe for me. God has called me to a role in motherhood that I was not qualified, not prepared, and not eager to do. Like Moses, I could list excuse after excuse as to why God should choose someone else to do the job.

But the reality is that God knew me better than I knew myself and CHOSE ME for this task as Malachi and Levi’s mother. While I didn’t have a burning bush experience like Moses, I was asked by God to do things that are out of my realm and comfort zone. With that request from God there was also an acknowledgement from Him that it would not be an easy calling. It would be full of obstacles, disappointments, and battles.

When Moses expressed his fear in his mission God gave him an arsenal of tools and signs that would help him through it. He even gave him Aaron, his brother, as his helper.

Reading that story was a needed reminder to me that God will never call us to something without giving us the tools needed to succeed. He will never request something of us that is too much for us to handle. Yes, the journey may be difficult, long, and non-textbook but every step is ordained and redeemed by God if we stay connected to Him through it.

He will give us the impossible, but then prove to us that that word doesn’t exist in His dictionary. I don’t know what mission God may have called you to. I don’t know if your reaction was like mine, or even like Moses’s. Maybe you are still burdened with those feelings of inadequacy.

Let me remind you that you have been called BY NAME for that very mission that you are facing, for that very task. There is a strength and endurance that God sees in you that you likely don’t yet see in yourself. Let me encourage you this week to trust that God is equipping you. And let me also encourage you to stay closely connected to God through that journey so that He can make your impossible His possible.

All He wants is a willing heart and ears that will listen to His still, soft voice.

And a total side note here….I am so blessed to tell you that one of my little ones at church asked Jesus into her heart today! To God be the glory for the great things He is doing!

God bless,

Leah

 

Happy New Year

We made it through another sickness y’all! I am overjoyed at the way their immune systems have been handling germs. Don’t get me wrong- those days of sickness are things nightmares are made of, but we have been able to stay away from the hospital and are so thankful. We had lots and lots of baths this week as we dealt with drainage induced vomiting.

 

Our Christmas was a casual and relaxed one with us all staying in PJs most of the day. Malachi and Levi got to open a few presents each- Malachi’s favorite was a switch adapted alligator and Levi’s was a Solo cup that we wrapped up.

Just look at that smile!

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We went over to the church that evening and set up an obstacle course for Malachi to drive his Wild Raptor through. Jake and I are insanely competitive so we took turns driving him through the course seeing who could do it the fastest. Malachi loved every minute of it!

Here is a sweet video of Malachi’s joy on Christmas morning:

I know it seems silly, but one of the highlights of the week for me was actually being able to cook meals. On typical weeks we are so go go go with appointments that spending an hour prepping a meal is just not logistically possible. It felt good to cook again!

On Wednesday everyone was feeling well enough for us to go on a little adventure. Malachi loves to go bowling and thinks it is fun to push the ball down the metal ball ramp so we headed to the alley for a quick game. He is still working on the concept of taking turns and signed “more” every time it was Jake or I’s turn to bowl. And Levi was a supportive cheerleader for us all, squealing with joy each time we walked back towards him.

We had some family come down from Ohio for a quick visit at the end of the week!

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Then came Friday. Oh Friday. We usually do a lock-in for our youth group on New Year’s Eve and this year I decided to shake things up a bit by renting the trampoline jump park in Chattanooga. Jake and I rock, paper, scissored to see who would have Carroll kid duty (Jake) and who would have church kid duty (Leah). We ended up with 75 teenagers and it was a wonderful time, but nothing will wipe out your energy faster than a lock in! I am still trying to catch up on some much needed sleep before Jake has to go back to work this week.

We have brought Malachi’s CBD dose almost to where the epileptologist wants it to be. He is still very lethargic as he adjusts to the increases but it is most definitely helping his seizures as well as his sleep. He is only having about 2 seizures a day and they are very slight. I am curious to see if the full dose will completely eliminate those.

We are back into medical land this week but thoroughly enjoyed the nice break the holidays brought us. Tomorrow we will see the physical therapist for both boys and then head down to Chattanooga to see Levi’s pulmonologist. Malachi has to be back at Vanderbilt on Wednesday so we have decided that all four of us will make the drive this time. We are planning to go up the night before so we can take Malachi to a restaurant called “Aquarium”. It is a restaurant that is completely surrounded by giant fish tanks and has very low light for Malachi. We usually take him to the Rainforest Cafe but we don’t think Levi can handle that one at this age haha.

I had the opportunity to do a devotion with each of the age groups represented at the lock in and thought I might share those thoughts with you all too!

There is a story that many of you probably remember from Sunday School about Jesus washing the disciples feet. It is found in John 13 and is a beautiful reminder that Christ did not come to be served but rather came to serve. But there is more meat to the story than just that wonderful lesson.

3 “Jesus knew that the Father had put all things under his power, and that he had come from God and was returning to God; so he got up from the meal, took off his outer clothing, and wrapped a towel around his waist. After that, he poured water into a basin and began to wash his disciples’ feet, drying them with the towel that was wrapped around him.

He came to Simon Peter, who said to him, “Lord, are you going to wash my feet?”

Jesus replied, “You do not realize now what I am doing, but later you will understand.”

“No,” said Peter, “you shall never wash my feet.”

Jesus answered, “Unless I wash you, you have no part with me.”

“Then, Lord,” Simon Peter replied, “not just my feet but my hands and my head as well!”

10 Jesus answered, “Those who have had a bath need only to wash their feet; their whole body is clean. And you are clean, though not every one of you.” 

This scene takes place the night before Jesus was crucified and they were at the Last Supper. The disciples didn’t know that this would be the last night they would spend with Jesus in his pre-resurrected body. I can just feel the awkward tension in the room as they witnessed this man, the promised Messiah, bend down and wash their feet. What a humbling moment that must have been. 

Then the silence is broken by Peter. The conversation that Jesus has with Peter is such a rich one and took me reading the verses several times before I truly felt I had grasped its meaning. 

“Unless I wash you, you have no part with me.”

When Peter hears Jesus say this his reply seems dramatic as he tells Jesus to wash all of him, desperately wanting to be connected to Jesus! But it is Jesus’ reply that really made my mind go into overtime:

10 Jesus answered, “Those who have had a bath need only to wash their feet; their whole body is clean.” 

Process that sentence for a minute. What does it mean?

Who are “those who have had a bath”? That represents people who have a personal relationship with God. When you ask Christ into your heart you are washed by the blood of the lamb and are made white as snow. In Isaiah we read: 

“Though your sins are like scarlet,
They shall be as white as snow;
Though they are red like crimson,
They shall be as wool.”

Salvation washes us, but because of our sinful nature we continue to get dirt on our feet. We trudge through things we shouldn’t, each step coating us with things that are not of God. 

That night Jesus was trying to teach His disciples that even though they have been washed they must make a concerted effort to remember to wash their feet- not just once but over and over and over again. We continually need to recognize the dirt that we pick up on our walk through life and spend time with Christ, allowing him to wash it from us. We need to acknowledge our sin and the marks it is leaving on us and repent, asking him to remove those struggles from us. 

So many times I hear comments that cite the phrase “those ‘perfect’ Christians”, when in reality we are just as flawed as the ones that don’t know Christ. We all have dirty feet. But what separates us is the ability to recognize the filth in our lives through the power of the Holy Spirit and the desire to be made clean, knowing that the dirt is hindering and distracting us from our relationship with God. 

When was the last time you asked Christ to wash your feet? When was the last time you went to Him, acknowledging your need and desire to be washed and made white as snow yet again? 

If you get time and need a great devotional I want to encourage you to read John 13! It is getting late and my brain is getting fuzzy but there are more thought provoking things in that chapter.

Please pray for traveling mercies for our family this week as we head to Nashville. Please also pray for our transition as a family as Jake heads back to work. It is always such a nice break to have him home with us all day every day and going back to solo days with the boys is always a challenge for me. 

2018 was a year of challenges for our little family, but it was also rich with blessings from God. We are praying that 2019 is a year of miracles and healings for both of our boys.

Much love,

Leah 

Merry Christmas!

Let’s start with the highlight of our week: Malachi’s new Wild Raptor:

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On Monday morning Malachi met with the robotics and mechatronics team that adapted and designed his special Christmas gift. They truly went above and beyond what we expected, not only making it remotely controlled but also adding a speaker, lights all around the bottom, and a dinosaur theme with a working dino head that he can work with his foot to roar. They put so much effort and time into making it perfect for him!

After the last sensory overload experience I decided to tell Malachi as many details as possible so he wouldn’t get overwhelmed. We watched videos of other “Wild Thing” cars so he could get used to the noise and made it the topic of conversation as much as possible.

When we got there and I asked him if he wanted to ride in it he let out a ROAR and was definitely excited to try it out. He made it a minute or two on his test drives and the overload was too much and he started to get emotional. But even though he was crying he was signing for “more”. It was like he really wanted to ride it but his body wasn’t agreeing.

We took it to the church later that afternoon and gave him is recordable switch programming one button to say “Stop Please” and the other button to say “More Wild Raptor Please”. He felt a sense of control and after 5 minutes we took away the switch and he was totally fine, giggling like a wild man.

Here is a video for you:

He LOVES it! He wants to ride it every day, which we will definitely be able to do when it warms up. But for now we have to stick to sneaking over to the church gym when it is not in use to get some hours logged.

The local news covered the story and did a great job! I have posted the video on my Facebook page if you would like to check it out.

Our week to a turn towards chaos on Wednesday when both of the boys woke up coughing. My heart sank when I heard Malachi hack, then again when Levi woke up doing the same thing. As you already know, sickness is tough on both of our warriors and the constant lingering fear of a hospital stay is always present. We tucked ourselves into the house for the rest of the week which has it’s pros and cons.

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One of the biggest pros was that we got to justify canceling all of our appointments for the second half of the week, including Levi’s hospital stay for a sleep study on Thursday. Ahhh shux (hope you read that sarcastically). And “unfortunately” they are booked until March so we will have to wait another three months to try again. Oops. 😉

But the cons nearly outweigh the pros as colds lead to sleepless nights and lots of vomiting for both boys, as they both don’t know what else to do with congestion but vomit it out. Levi is throwing up about 18 times a day right now and that is much better than the last few days. Really being home is the only option- we need to have access to mops, changes of clothes, and the bath tub.

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We are on day 5 and still not out of the woods yet. We are keeping a close watch on their temps; that is typically the first indication of a secondary infection like pneumonia so please keep them in your prayers.

We were able to cram in some busy days on Monday and Tuesday before the sickness hit with several appointments. Malachi also got fitted for his new AFO (leg braces)- we went with Superman themed ones this go around. We will head back to Vanderbilt on January 2nd to see the surgeon for a follow up and we are hoping he will be cleared to take the casts off and go into braces full time.

Levi never lets me mess with his mouth but I happened to be able to snap a pic this week of two of his four teeth. He was mad at me because I made him try some blackberry jelly.

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Christmas…oh Christmas. Jake and I were laughing a few minutes ago reminiscing about the last few years and the adventures Christmas day has held. Last year we were in a hotel room in Cincinnati trying to stay close to Levi in the NICU. It is incredible to me the details I remember from that day. I hope that time will fade those for me. But the highlight of that day was getting a call from the Ronald McDonald House saying they had an opening. It would become our home for the next 4 months.

The year before that we had sold our home with the dream of building Malachi a handicap accessible one. We were vagabonds for the time being until our rental opened up, living with relatives for a few weeks in Ohio then living in an RV “down by the river” literally. We laughed at the comedy in that little RV, trying to make life with a boy in a wheelchair work in there.

Needless to say, we are thrilled and aware of how blessed we are to spend this Christmas at home together. I almost hesitate typing that as we continue to fight sickness, but maybe proclaiming a stress free Christmas will make it so.

Here are a few more pics from last week’s debut as horse and donkey in the church nativity:

Spiritually speaking, I have been alllllllll over the Bible this week. Jake is off through the holidays and when that happens we are each able to carve out some solid devotional time. I study my Bible every week when I am preparing lessons for the youth and children, but devotional time “for me” is also so important and necessary and something I often don’t get enough of.

This week the verse that is playing on repeat is 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.” I think I have talked about this one recently, but this week it has been pressing on my heart in so many ways.

This sentence comes out of the mouth of Joseph, who had endured some horrible life experiences leading up to this moment. His testimony is a beautiful one that has always been an encouragement to me when I am feeling betrayed, alone, forgotten…it hits so many emotions that I can relate with! If you want a devotional to dig into, the Joseph story is always a good one; it starts in Genesis 37. If you aren’t a big Bible reader the book “Detours” by Tony Evans is a thought provoking study we just completed in our Sunday School class.

But there is something in here that my mind keeps drawing to.

“You intended to harm me…” We live in a fallen and ugly world. While our mouths speak love and compassion our hearts and minds often do very different things.

I have been thinking a lot this week about the past. About all the times I can look back at and see intentional efforts to harm me…my reputation, my self confidence, my walk with the Lord, my relationships with others. My past, as I am sure yours may be as well, is littered with people who have tried to make me feel “less than”.

When I look back at those early years I see that they had success at making me believe that lie. But when those intentional attacks hit me these days my take on it is so different…

“…but God intended it for good.” When I look back at those past hurts I see how beautifully God orchestrated them into blessings. And through them my walk with God grew stronger and more concrete as I watched His providence reign again and again.

Now when those intentional harms come at me I don’t panic like I used to as I know that God can take even the ugly and create something beautiful from it.

I don’t know who might be the focus of  your “You intended to harm me…” moment. It might be a family member, it might be a coworker, it might be a friend, it might be a stranger. But choose that believe that through that attack God will intend it for good. Give it over to Him and allow Him to create a masterpiece. God can re-direct ANYTHING to glorify Him. Do you trust Him to do that?

Please continue to pray for my boys this week, that we breeze through the rest of this sickness without complications.

We pray that your Christmas is full of God moments and reminders of how much He loves you.

Merry Christmas friends,

Leah

 

Joyful, Patient, Faithful

The boys had a special visitor come by the office this week and they got a chance to say hello.

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Levi is very stranger=danger these days so it went about as we expected.

This is the interesting part…Jake and I have decided not to do the whole Santa Claus concept with our kids. We are not against anyone that does, we just choose not to for personal reasons. But when Malachi saw Santa on Monday he got SO excited and his face showed recognition for his name, which completely surprised me. The only context he has for Santa is them talking about him on the cartoons he watches. It was just more affirmation to me that he is a smart little boy.

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Most of our specialist doctors see the boys on either a 3 month or 6 month rotation. Between the two boys we see more than 18 specialists. We cram as many into June as possible but that means we end up with a whole lot of December appointments! I think if I wrote out our week hour by hour you all would be fascinated at the amount of things we cram into every 24 hours.

Here are some highlights:

Monday we headed to the hospital to change out Malachi’s feeding tube. It was a long 6 weeks with the original tube which had an insanely long extension dangling out of it at all times. It always got caught on things and nearly pulled the whole mechanism out of his tummy multiple times. We successfully switched over to a mickey button which is about the size of a nickel and stays out of the way. Lifting him up for the first time after the switch was so freeing, as I didn’t have to make a plan for the dangling tube before moving him. Malachi has handled the switch well. We have not used the tube a single time since the switch but at least it is there as a plan B in case he gets sick.

Tuesday we headed back to the hospital for Levi’s appointments. We started with his synagis shot from pulmonology then headed over to neurology. It was a very long appointment, but for specialists like these you want them to be thorough. He examined Levi and we talked about what milestones he has hit as well as which ones he has not. The neurologist is extremely honest which is something we have always liked about him. He said that he is pretty confident that Levi’s brain damage is more extensive than we realize. He was very eager to do another MRI, but I have never been a fan of doing imaging unless it will change our course of treatment. I don’t like doing things to the kids for curiosities sake. I did agree to do one after Levi turns two so we scheduled that for next December.

We also talked with both the neurologist and the epileptologist about Malachi’s new med and how he is reacting to it. We found out that Malachi is the first and only patient in Chattanooga (well, from the children’s hospital) that has started the medication so they are very curious to see what happens with his seizures. Malachi is still having a hard time adjusting to the tiny dose we started him on and is very lethargic and sleepy. I asked if we could postpone the increase and they were okay with postponing another week. He has had a slight decrease in his seizures and the ones he is having are much less aggressive, so that is good.

Friday we headed back to Chattanooga but this time for something fun! Every year a local organization adapts lots and lots of toys to work with switches like Malachi’s. They have a big giveaway and let anyone in the community come and pick out a toy to take home. Malachi had to miss it last year because we were in the hospital in Cincinnati with Levi. But the year before I remember how much fun he had trying out all the toys and choosing his favorites. Here were some photos from that year (2016):

Look at that chunky monkey!

I talked to Malachi all week about going to pick out a toy and he would always sign YES, ready to go then and there. It was pouring down rain on Friday and making the two hour round trip drive for a toy sounded awful but I had made him a promise so off we went. We got there and started trying out the toys and then the chipmunk happened. One of the toys was a tiny little chipmunk and when you pushed the switch he danced and sang in a chipmunk voice, but was very loud. Malachi did not see that one coming and it absolutely terrified him. He started crying and signing NO so I turned it off as quickly as possible.

That was it…Malachi was done with our toy adventure. He just couldn’t recover from the scary chipmunk and kept signing NO NO NO. I would show him a toy and say “Would you like the tiger?” and he would sign NO. When I asked him if he wanted to go home he very adamantly signed YES YES YES with a frown on his face. I picked out the toys I thought he might like and we headed back toward home.

In between all these appointments and adventures I have to find time to make sure both boys are fed and happy. A lot of times that means we find a hospital corner or a parking lot somewhere and I get Malachi out and sit in the passengers seat with him to feed him. As I sat there with Malachi I started to get so angry. Not at Malachi, not at myself, but just at this crazy life. My motives for the day were pure…yet the outcome wasn’t what I had hoped it would be. Those unmet expectations get me every time.

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The kids semi-successfully had their big debut performance in the church play this evening. Levi was a whiny donkey, crying often but not completely losing it. Malachi did great as a horse and was convinced that the clapping from the audience was for him and him only. He kept leaning his head forward, trying to get a glimpse at the audience. It was really nice to see them be included in the performance. I will try to get some better photos for you for next week but here are a few:

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Tomorrow morning we will be meeting with the high school class that adapted Malachi’s “Wild Raptor”. I am SO EXCITED to see his reaction! They facetimed me this week so I could decide if it was safe enough (it is VERY fast and the remote is sensitive) and I couldn’t help but laugh afterwards thinking about how much it was going to blow his mind. I can’t wait to share the video with you next week!

I have felt like that Bop-It game this week, with things coming at me from all angles bopping, twisting, and pulling me into different emotional directions. There have been so many beautiful moments, friends stopping by with gifts for the kids, kind strangers buying our dinner, moments of uncontrollable laughter. There have been moments of isolation, frustration, hopelessness, and defeat. This has been one of those weeks where I have had to focus really hard on choosing to be joyful.

I have had two verses on auto play running through my head all week…

Philippians 2:3-4 “Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking at your own interests but each of you to the interests of others.”

I have really been trying to evaluate my selfish tendencies. We all have them…those moments when it is easier and just plain nice to put ourselves before others. But by professing to be a child of God I am professing to do things differently than the world does them. And fighting our nature towards selfishness if one way to try to do that.

When I am racing towards the door trying to beat another person in so I can be first in line…then this verse played in my mind… “Do nothing out of selfish ambition- value others above yourselves”. So instead of continuing on my well earned path at being first in line, I decided instead to hold the door to allow them to walk through it first. Oh boy, did that one stress me out. But we are called to those moments of self-denial so we truthfully should be seeking opportunities like these.

Time out for a minute: that last paragraph sure sounds like a brag moment, which I hope you understand it most definitely is not. I am actually ashamed that my nature doesn’t do these things automatically and I have to think so hard about them to make them happen in my life. It is a true challenge for me.

The second verse is Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.” Each chunk of this verse could be a devotional all on its own! But as I have recited this in my head hundreds of times this week I can’t help but look at the transitional nature of this verse.

The word hope has been floating through my heart this week as I process what it looks like in my family. Hope is one of those emotions that is very hard to describe. The last time I felt full of hope was almost exactly one year ago as I flew Levi from Chattanooga to Cincinnati for his experimental procedures.

The interesting thing about hope is that it literally grows within you. You can almost feel it growing larger and larger, leaving you with an airy excitement as you think of all the potential things that the hope could bring. Like the verse mentions, it brings with it the feeling of pure joy.

But what if someone or something pops that bubble. That same night that I was filled with an enormous amount of joyful hope things took a turn for the worst. I scooted myself to stage two of that verse into the “Patient in affliction” category. I wrote a Facebook update this week talking about the night we arrived in Cincinnati. This may be a repeat to some of you who have seen it so feel free to scroll past it until you reach the black line. I copied it to share with anyone who is not on Facebook:

One year ago I boarded an air ambulance with my 4 pound son, wild eyed with hope that we would find a solution for his bilateral vocal cord paralysis that didn’t involve a trach. I have never shared the details from that night but as I lay here awake I feel like I need to. I struggle very much with PTSD from Malachi’s journey but even more with Levi’s and my heart has ached the closer we have drawn to this date.

Levi was extremely stable when we left Chattanooga, where he was comfortably kept on 4 liters of oxygen. He needed the high flow of those liters to help the oxygen get past his unmoving vocal cords. Insurance wouldn’t approve Cincinnati’s transport team to come pick him up so we settled with the company of their choice, REVA. At some point during his plane ride the two-man crew decided unbeknownst to me to turn him down to 1 liter of oxygen, which was not enough flow to keep him safe. I had no idea this was happening…and is something I feel so much guilt over. I sat next to him, secretly celebrating over the advocating I had just done for my son all while he was struggling on the stretcher next to me.

Levi screamed the entire 4 hour journey and I was very concerned about how much he was sweating. They had him strapped to an adult stretcher and covered in big blankets- not once did they peek at his abdomen to check for retractions when he breathed. I asked if we could loosen the straps a bit to try to calm him down but they told me it wasn’t safe. Every time I showed concern they would reassure me saying he say still SATing just fine. I assumed he was still at his 4 liters of oxygen. I asked why he wasn’t being transported in an isollette and they replied that they didn’t do that for all babies. Levi was 4 pounds.

We got to Cincinnati close to 2am and when we unstrapped and unwrapped Levi in the NICU he was breathing so hard he was coming off the table with each breath. He was drenched in sweat and white as a sheet. I started to panic, as did the team of doctors and nurses as they examined him. They told me they thought that one of his lungs had collapsed and they both sounded like they had fluid in them.

They worked on Levi for several hours, trying to get him back to his norm. He started to perk up and get his color back a little. They decided it was a good time to take me on a quick tour of the NICU so I would know where everything was. A few minutes later I looked down at my phone and saw I had missed a call from the Cincinnati NICU. They number called again and it was the nurse practitioner. She said “Levi stopped breathing. We are bagging him now and need you to come back immediately.”

I raced back into the unit to find a team of doctors and nurses surrounding my baby- one doctor was using a bag to rhythmically breath air back into Levi…I will never forget the image of his chest rising up and down but knowing it was not happening by his effort. They told me his little body just got tired of fighting to breath.

I felt my knees starting to give out and I was on the verge of vomiting…the same feeling that has happened so many times in my journey as a mother with Malachi, but it wasn’t supposed to happen again with Levi. And each time those knees start to buckle I have to take a deep breath and remind myself that there is no one to catch me…those hands that would catch me need to be focusing on my son. Giving into my body’s instincts and my emotions instantly felt selfish so I fought the urge with every ounce of my being. I can’t afford to make things “about me” anymore.

Levi was put on the ventilator and I camped by his bedside that night. I couldn’t stop crying, plagued by the guilt of knowing I was the reason he was on that plane. I was the one pushing for experimental surgeries, and while my intentions were as pure as you can get, I had put my son through more trauma.

It was time for me to pump so I hesitantly snuck away to the pump room. As I sat in that small room I officially lost all control of my emotions. I felt so incredibly alone. I wanted to call Jake and tell him the bad news but I didn’t want to burden him two states away where he couldn’t do anything about it. And I knew that he likely had Malachi in the bed with him, and sleep with Malachi is rare and to be cherished. And I couldn’t think of a way to even start that phone call.

I remember looking into the mirror in that room and for the first time ever I didn’t recognize myself. Why was I here? Why do my children keep having to suffer? When will I get to be the mom I used to daydream I would be?

I called Jake a few hours later and he quickly made the 6 hour drive with Malachi. When he arrived we mourned together over the nights events, both of us exhausted from emotion but not wanting to leave Levi’s side.

I don’t know if you have ever experienced true grief- it is completely overwhelming and it feels like any moment you are about to die as your body does things you have never felt before. I really don’t even think I can accurately describe the feeling to you.

I still carry guilt from that night even though I know in my heart I shouldn’t. When the eye doctor tells me that Levi has to have surgery on his eyes as do most “brain damaged kids like him” I immediately feel the pang of guilt, wondering if that damage happened in the plane that night. The neurologist told me this week that he suspects Levi’s brain damage is more extensive than the last MRI shows, and I can’t help but feel those sharp pains of guilt all over again.

The guilt of the special needs mother is a unique thing. We blame ourselves irrationally for things out of our control. The “what ifs….” And we are too stubborn to let anyone tell us differently. We live in a world where our job 24/7 is to keep our children alive. Even during the healthy times, death still lingers on our minds. We pray that our kids live long lives but also pray that God doesn’t allow them to outlive us, as we fear for their wellbeing once we are gone. We live in a world where realities trump dreams. Our days are not 24 hours, but rather continuously running as one hour after another.

The life that I have been called to is a very difficult one and the wounds from the journey run deep. The girl in the mirror is not who I ever expected to be. This life requires me to cling to God and allow Him to be the one who catches me- His hands are big enough to handle my weary knees as well as my children.

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

We simply pray for the strength to get through one more day, and thank God for the beautiful blessings that these two boys are in our lives. And I do my very best to not stay in the memories. My mind fights back, clinging to every sight, smell, and sound. We continue to pray that God replaces all those memories with beautiful ones as we raise these amazing boys.

Side notes: we do not consider Levi as “special needs” but rather refer to him as “medically complex” for now…and we pray that formal diagnoses never need to come. I am told to expect him to have some level of cerebral palsy but not anything near Malachi’s CP.

I contacted the air ambulance company the next day who told me that “transporting him at 1 liter at 100% oxygen is essentially the same as 4 liters at 21%”. That is not even remotely true. Levi simply needed flow, which he did not get. They stand behind their crew’s decisions that night.

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And the final step in that verse “Faithful in prayer.” This is something I am struggling with, and I have been open about struggling with this one for awhile now. Prayer is hard for me. Most waking moments my mind is consumed with keeping tiny children alive. When they fall asleep my body shuts off, knowing I need to glean all the rest I can while I have the opportunity to. Prayer is something I want to be more intentional about. More faithful in doing.

I don’t know where you are on the stages in this verse. Some of you may be in the hope stage, some in the affliction, and others in the prayer stage…the stage where the situation is beyond your control and the only option is to pray. But once you hit that final stage your emotions have taken a beating and prayer can be hard.

Let me encourage you to challenge yourself this week (I am challenging myself as well) to try to live out the adjective for the stage you are in. Joyful, Patient, Faithful. I don’t think it is any coincidence that these three are part of the fruit of the spirit. These emotions are often something that only God can bring to circumstances like mine!

Please remember our family this week, as it will be a challenging one. Levi goes in for another overnight sleep study on Thursday and to say I am dreading it would be a huge understatement. We also have some big talks with pulmonology coming up and will have to start planning our next trip to Cincinnati.

Oh, and here is some pretty fun artwork I did with the boys last week. Levi’s wasn’t feeling the “star making” portion but overall it turned out really cute. We managed to do 23 of these over the last month with the kids (each family did 1 canvas) in our church as a surprise for their parents. We would get their hand prints and foot prints and I would add the details layer by layer. I could officially paint these in my sleep haha! But seeing the joy it brought the parents tonight made it worthwhile. I had a WHOLE lot of “regard others better than yourself” moments while painting these, doing my best to make them as perfect as possible for their mommas just like I would want them to be.

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Thank you for choosing to go on this journey with us each week.

Much love,

Leah

 

 

 

Oh Christmas Tree

This week I have been doing a lot of evaluating on the life we are giving Malachi, and I decided we needed more “silly” things for him to be excited about. More traditions. We aren’t big holiday people- we don’t even really get into celebrating birthdays. Christmas is proving to be particularly hard for me as I can’t stop flashing back to Levi’s hospital stay last Christmas. On a whim I asked Malachi if he would like to go pick out a Christmas tree and he about fell out of his chair enthusiastically signing YES.

So on Saturday we headed to the store, Malachi wide eyed with excitement as I told him that some trees were soft like a puppy dog and some were sharp, like the teeth of a dinosaur. I told him we would let him feel them both and decide which one he wanted. Little did we know that Americans are crazy about Christmas and by the first week in December nearly every place is out of quality Christmas things. Duly noted for next year. We managed to find a handful of “sharp” Christmas trees left at a local store and Malachi was smitten. We loaded one into the van and when we got it home Malachi couldn’t stop giggling. Then we turned the Christmas lights on and he really lost it with excitement.

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I went down into the basement and dug out a few bins marked “Christmas” that have made the move with us from the cabin to the rental to the new house. I opened them up and got hit with a wave of nausea as I looked inside. I remember buying these decorations pre-Malachi and daydreaming about all of the memories we would have with them. I had envisioned all of the kids helping me unpack these bins and decorate the house, fighting over which favorite ornament they would get to hang on the tree. It was like a time capsule of a life I envisioned I would have.

I talk to you often about the grieving process special needs parents go through. It never really completely ends, and such small and insignificant things can trigger it.

But I thought about that sweet little 5 year old upstairs, tickled by the lights on his real Christmas tree and I hauled those bins up the stairs, verbally dictating each ornament I placed on the tree so I could share some of the magic with him.

He is pretty much obsessed with the tree. We had someone stop by last night and I am confident Malachi thought the only reason he came was to gaze at the tree he picked out. We have put one of his switches by the tree and each morning and night we have Malachi “turn on/off the lights”- one of us hides by the outlet and waits for him to push the switch- timing it so he thinks he is doing it. Mr. Independent.

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Every now and then I get the feeling that an emotional burst is about to take place. The last time this happened I was able to ward it off until the feeling went away. I am currently in one of those battles against fragility but still winning! We will see what this week holds before I do my victory dance.

Levi learned how to sit independently this week! And how to get up from the floor to the sitting position all by himself. Big boy! The pillow is there just in case but he is able to stay like this for over 45 minutes.

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We also discovered this week that Levi is NOT a morning person.

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Malachi and Levi are both in the church Christmas play this year- Malachi is a camel (we think) and Levi is a donkey. Their big debut is a week from today.

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Tuesday’s neurosurgery appointment went well, so well that the doctor agreed to change him to an annual check up instead of bi-annually. Praise the Lord for less appointments! We talked about the MRI chaos from 6 months ago and decided to wait to get baseline imaging for another year, and this time around we will go for a CT.

We loaded up from the hospital and headed back towards home for a very special meeting with the high school class that is going to be working on Malachi’s Christmas toy.  If you weren’t able to read last week’s blog, a local group of students is going to adapt a ride on toy for Malachi to make it remotely controlled. This is a HUGE project and we are so excited to find some brilliant minds willing to tackle it for us.

I was about 20 minutes away when I got a call from the local news station asking if they could do an interview and come to the high school for our meeting. I am all about opportunities for awareness so I told them I wouldn’t mind.

I learned something about Malachi this week- he cannot handle big surprises. I have been keeping this project a secret from him. When we got to the school the class came to greet us and we went back to the classroom to discuss Malachi’s needs. Malachi seemed very overwhelmed by the situation and was acting very tense. Then he started to get emotional, sensing that everyone was looking at him and mommy was talking about him. Sweet little tender heart. He is always up for adventures but this was the first time I didn’t explain in detail where we were going or what we were doing. Lesson learned!

The meeting went so well and the students asked very specific questions that would help them create something special and perfect. When we presented this need we simply asked for someone to make the machine remote controlled. But as these kids processed Malachi’s story they decided to make this even bigger, talking about giving the machine a dinosaur theme and installing speakers for dinosaur noises and music. They had so many ideas- even a sidekick car for Levi to ride in. The thing that struck me the most was their genuine excitement to help. It didn’t feel like they were “doing a favor for us” but rather they genuinely wanted to make this a reality for Malachi. What a special group of students, and I can’t even process being that intelligent!

Here is the news story that aired about the project…I had to video it with my iphone so the quality isn’t the best:

The news reporter followed up with the class on Thursday to see their progress and sent me these photos:

And a link to that follow-up article:

https://newschannel9.com/news/local/cleveland-high-school-students-get-to-work-on-malachis-new-ride

I am so excited to see what they come up with! And we have already started to explain it to Malachi, and he is SUPER excited. We didn’t want him to get overwhelmed when they present it to him. He giggles each time we tell him about how fast he is going to be able to go.

I gave this week a theme: “Embrace the Tube”, hoping to get over my bad attitude about Malachi’s g-tube. Every doctor we spoke to talked about how much easier it would make our lives. How it would save us so much time in our day, as it was a direct way to feed and medicate Malachi. But this tube has instead been such a negative thing. We are constantly battling granulation tissue (so bad that his therapists say it is the worst they have seen), constant oozing so multiple dressing changes each day, stinkiness from all the oozing, and the doozy— Malachi hates it and cries and tells me “no” anytime I try to send food or meds through it.

So with this week’s new theme in mind I started trying to slowly run feeds in through the tube…so slow that hopefully Malachi wouldn’t even feel it. Immediately after the tube feeds ended Malachi seizures increased and he was out of sorts for hours. The amount of intestinal pressure did not chance with the tube feeds like I had hoped it would, as he wouldn’t be bringing in as much air as his oral feeds. I tried for three days then abandoned my theme and went back to feeding him like normal.

Tomorrow I will meet with the GI doc and we are hoping to switch out the style of tube to help with skin irritation and the granulation tissue. I am just so disappointed, but also so grateful that we didn’t proceed with the tube before now.

On Thursday Malachi started his new seizure medication called Epidiolex. I know I recap a whole lot so bear with me- but it is the first FDA approved cannabidiol medication. I went renegade about two years ago and started CBD oil on my own but got a little scared to keep increasing without being under doctor supervision as it can mess with liver function and needs to be monitored closely. But we are seeing the same initial results with this new med and he has slept 7-8 hours a night (with just one short wake up session in the middle) since we started it. His seizures are also slightly less intense, but he is still having about 8 of them a day. He is very sleepy as his body adjusts but we expected that. This Thursday we will double the dose, officially taking him higher than I was ever willing to go so I am excited to see what positive changes will happen.

Just a little humor for you today…this morning I did a lesson with the children at our church about the Last Supper. Last Sunday we had done church wide communion and it seemed like good timing for me to teach them the symbolism of the bread being the body of Christ and the juice being the blood that He shed for us. I explained to them that these were just symbols- things to remind us about the sacrifice Jesus made for us. Then I let them each take a cracker and break it, encouraging them to think about how much Jesus loved them. After the lesson I let them eat their cracker just for “waste not want not” purposes. It was definitely an ambitious lesson for the kids (ages 3-11) but when we got in the car after church I told Jake how well the lesson went!

Tonight I talked to a parent whose 5 year old son was in the room. She said she asked him when they got in the car what he did in children’s church and he replied “I ate Jesus’ skin.” Let’s all collectively cringe and laugh at that comment! Oh dear.

This week I will be tackling physical therapy and feeding therapy for both boys; Malachi also has horse therapy, GI and the dentist, and Levi has Neurology and Pulmonology appointments. Lots of hospital days and busyness!

Devotional thought time. Writing this blog each week is a wonderful challenge for me on so many levels. Emotionally it allows me to dump out everything in my heart and sometimes that action allows me to walk away from those emotions. Physically, I selfishly get to sit and do something I enjoy doing (writing) while Jake takes the kids. Cha-ching. That was a cash register noise if you didn’t get that. Spiritually it challenges me in my prayers to ask God to lay something on my heart. Every time I ask He comes through. That’s one of the many cool things about God.

This week has been a “dark” week for me. I have just felt so discouraged. I laid in bed this week and prayed over Malachi sleeping quietly next time me. As the words came out of my mouth “God heal his brain and stop his seizures…” he went into a two minute long seizure. Talk about discouraging! I try to pray with true faith and belief that God can do the impossible but my endurance lately has been wavering.

Tonight Malachi and I went on a date. This is the second one this week and is a result of the creating traditions challenge I mentioned earlier. Just he and I went to listen to the Christmas cantata at church and they sang a song that he knows very well. He was overjoyed and I encouraged him to sing along. He gathered up a burst of strength and opened his little mouth in anticipation but nothing came out. He tried again and again, each time yielding silence.

As I watch him struggle in a fight between his brain and his body I find my heart hurting deep within my chest. I would trade places with him in a heartbeat if it meant I could take some of the pain from his life. I never want him to think I view his struggles as a sad thing, I only want to encourage him, so I have to fight the urge to cry and tell him what a great job he is doing mouthing the words that he wants to say. I have to help him find beauty in the ashes, even though sometimes it is hard for even me to find.

This week I caught myself wishing I could talk to God about this suffering my son is going through. I started to convince myself that this is a struggle that is totally unique to me. No one else gets it.

And as I camped out on that mindset God started to flood me with story after story from the Bible of other moms who “get it”.

Hagar, the mother of Ishmael. She was exiled into the desert with her son they ran out of water. The boy was crying and she set him under a bush. The Bible then says in Genesis 21:16 “Then she went off and sat down about a bowshot away, for she thought, “I cannot watch the boy die. And as she sat there, she began to sob.”

Moses’ mother, who hid her child as long as she could and in an act of desperation put him in a basket and into the river. The suffering and turmoil that decision must have brought her.

The widow from the story of Elijah. She and her son nearly starved to death. Then later the boy grew very sick and died. Elijah brought him back to life.

The woman in the New Testament who was in a funeral procession to carry her dead son to his grave when Jesus brought him back to life.

Then there is Mary…who watched her sweet and perfect son be brutally crucified, unable to stop his suffering.

As I thought about each of these stories I realized an eerily common thread. In each story the child came close to death or actually died before the Lord intervened. Why? Why in the world does God not see our suffering and ease that burden long before the thought of death is even there? Does God enjoy seeing our suffering, hoping that it will bring us close to Him?

I say this again and again but God is a God of compassion. The Bible tells us about His compassion over and over again in the scriptures…

Jeremiah 29:11 ‘ “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you a hope and a future.” ‘

Trials and tribulations do not come from God. He does not create suffering in our lives to make us grow closer to Him or to test our faith. He is a good God and a loving God. Trials are a tactic the enemy uses to draw attention away from our relationship with God. And in those dark moments, the temptation to not turn to God is a real struggle.

But what I want you all to hear me say tonight is that GOD IS ALWAYS RIGHT NEXT TO YOU. Even in your trials, even in your suffering, even in your misery. He never leaves your side. And He sits close enough to speak life and encouragement into your ears….you just need to listen! He never promised to take away our struggles, but He does offer us a promise of His peace along with a reminder that He has overcome this filthy, evil world that we are passing through.

John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Every single mom I could think of in the Bible that experienced suffering through the lives of her children had their God moment. They had that moment when He glued all of the pieces together and flipped over that puzzle to reveal that all along He had a a beautiful picture already designed from what we saw as chaos.

I think about the story of Joseph, a man who went through trial after trial. And he spoke these words:

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.”

When I read that verse, I find myself wanting to speak these words to the devil himself in regards to my family. What Satan intends as harm, God intends for good. And my prayer is that even through our trials, God will continue to use the Carroll family to be a lighthouse that can be seen through the storms.

Please keep our family in your prayers this week, particularly health both physically and mentally.