Another week full of smiles and fun!

This week we attempted our first post quarantine specialist appointment. Jake had to be at the house to meet a repairman, so I went solo with the boys. Needless to say it turned into quite the adventure!

I pulled into the parking lot with enough time to get all the gear and boys unloaded, but when I got the wheelchair out things started to go south. The chair had not been used in so long that it had gotten stuck in the 90 degree position and wouldn’t recline. I can’t even put Malachi in the chair at that upright position so I fought desperately with the chair trying to get it to budge. To get it to recline you have to squeeze each of the handles at the same time and slowly tilt it back. Since it wasn’t moving, I was squeezing the two handles and shaking it like a wet rag to no avail which created a quite hilarious scene for some nearby construction workers. I was sore the next day from shaking that wheelchair with all my mommy might.

There was no physical way to get both the boys up the elevator and into the office safely without the chair so I continued to fight, feeling the panic creep up in me as the minutes ticked by. Then after 10 long minutes finally BOOM it came loose! I grabbed Malachi and plopped him into the chair, then grabbed Levi only to find that he had peed through his pull-up, pants, onesie, and car seat. He was dripping with pee so I grabbed a towel, spare clothing, a new diaper and wipes and raced into the building.

When I got to the door it was locked and there was a sign with a number to call; that number led to an automated message that prompted you to push buttons to try to speak with someone. While I was three minutes into my phone call with the automated man, they called me and told me that the doctor was leaving because we were now officially 15 minutes late.

Long story short, the doctor waited and was very kind in spite of my lateness. The nurses let me know they were a little miffed, and grew even more irritated when I wouldn’t put a mask on the boys. With their respiratory issues I am afraid they can’t exchange CO2 like they need to.

As soon as we entered the exam room Levi’s medical PTSD kicked into high gear and he had a complete meltdown. I tried all the tricks in the book but none of them would calm him down. Malachi didn’t like that Levi was crying so he just got plain angry and answered NO to all of the questions the doctor asked me about him.

I was able to bribe Levi with gloves if he would stand on the scale.

We went through the appointment and as we packed up to leave I heard it…the sound of a torrential downpour. I looked out the window and the rain was flooding the parking lot…a special needs wheelchair momma’s worst nightmare.

At this point I was in it to win it so I pep talked the boys (and myself) and told them they were about to take a shower. I found a small awning semi-close to the car where I could park Malachi while I loaded up Levi and off we went.

I was drenched within seconds and a sweet doctor who was driving by jumped out and handed me his umbrella and told me to keep it. The gesture was truly sweet but I needed both hands to wrestle Levi into his seat and carry Malachi safely. The doctor was still in his car watching and I didn’t want him to feel like his kind gesture was unappreciated so I tried tucking the umbrella under my chin and running with Malachi flopping over my shoulder. Oh goodness you can imagine what that must have looked like haha!

It was one of those moments where you just have to laugh. The boys were both wild eyed with excitement and I was soaked completely through. It was a big, sloppy welcome back to reality gift from the special needs mommy world, as if to say “Let the games begin!

Aside from the obvious chaos of that day, we had a great week with the kids. Malachi’s seizures have continued to ramp up randomly but overall better than last week.

Both of the boys did excellent in their physical therapy sessions on horseback. It has been really helpful for Malachi specifically to help improve his posture that has worsened during this break. I don’t know if you have been able to spot these negative changes in the photos I post, but below is an example of the weakness I am talking about.

When he is on horseback he is required to hold his head up high which strengthens those muscles.

Levi has been his goofy self, spending as much time outside as we will allow him to.

We are trying to get him used to wearing a helmet for his horseback sessions, but he isn’t a fan quite yet. We can’t comfortably get a helmet on Malachi due to his shunt and microcephaly but Levi has no reason to not wear one while on the horse.

I have typed five different devotionals and erased each one. My heart and mind are in so many places right now! I never go into writing the blog actually knowing that I am going to write about. Instead I pray that God writes this part for me, typing the words that someone needs to hear. I have caught myself tonight trying to steer it a direction instead of giving it to God so let me try again…

It was on this week 7 years ago that we brought our miracle Malachi home from the hospital for the first time. It was the first time he was without wires, the first time we were alone with our child, and the first time we were primarily responsible for his care.

After 112 long days we walked out the doors of the ICU and loaded our little 6 pound 4 month old into the back seat of our car. I didn’t take my eyes off of him the entire ride home.

We brought him into our home and I still couldn’t take my eyes off of him.

It was 3am and I still couldn’t bring myself to take my eyes off of him, even though they were so heavy with exhaustion. I had convinced myself that if I closed my eyes something bad would happen to him. He still had fresh incisions from his brain surgery and I could see the many scars telling his story all over his tiny body.

We were home but his body was still so broken and fragile. Both hips were dislocated, his femur was broken, and his feet were turned unnaturally upwards against his shins. We weren’t able to feed him like a typical baby because of his severe reflux and vomiting. Fear of the unknown gripped me in an inexplicable way.

To be completely honest, I still have that very same issue some nights. As I stare at his warped frame, or watch his eyes flicker deep within his seizure I allow fear to creep back into my soul. I start to mourn over things that haven’t even happened yet. My imagination begins to create scenarios and outcomes that feed those fears until they become irrational and overshadow the truths I know about God and His plans to prosper me and not to harm me.

That first night home with Malachi I distinctly remember calling out to God and asking Him for wisdom in raising this boy. I asked Him to replace my fears with His wisdom and clarity of thinking. And in that moment he exchanged my spirit of fear for an inexplicable peace that could only come from Him.

“God does not give us a spirit of fear, but of power and love and self control.”            2 Timothy 1:7

Sometimes we try to convince ourselves that fear is an emotion that comes hand in hand with the role of motherhood and give it a position in our thoughts. But we have to see fear for what it truly is…a subtle but calculated attack from the devil. Your heart is not able to serve two masters, and when we choose to take on a spirit of fear we are communicating to God a lack of trust in Him.

This week my goal is to make an intentional effort to take EVERY thought captive. And like that first night home with sweet Malachi, I will be praying to God for His wisdom and strength. And may He continue to cultivate that spirit of power, love, and self control in each of us.

May God bless each of you,

Leah

 

After lots of deliberation and weighing the pros and cons we decided to take the boys out of the house and let them start physical therapy on horseback again. We spoke with the therapist beforehand and planned it out to the point where we felt like it was a low risk situation.

Malachi has been riding for 5 years and was so excited to get back on his horse. His little body has not handled being home all day- he is usually in several seating options throughout the day when he is out and about. At home we only have three that we can switch him in and out of, most of which focus on his comfort rather than proper positioning.

 

Levi has been having a lot of balance issues due to his cerebral palsy in his core so we thought starting him on horseback therapy couldn’t hurt. We didn’t think he would last long, but he shocked the socks off of us by lasting the whole 30 minute session and actually enjoying it. We took a progression of photos from start to finish and you can see how much more comfortable he was by the end.

We will continue doing all of their other therapies via telemed through most of the summer. I am just not comfortable taking them into public places yet.

Unfortunately that same afternoon Malachi started having some pretty major seizures. I am fairly confident that the dust from the barn was enough of an irritant to set his brain into chaos. After having several large ones he was exhausted and limp for most of the evening so we spent time snuggling on the front porch bed and listening to the birds.

For Christmas we got Malachi a big daybed swing for his treehouse, and it is his favorite place to sit with us. Finding comfortable spots for us all to snuggle is getting harder to find as he grows. Recently I spotted another daybed swing for sale on a local website and we snatched it right up and started trying to fix it up. I did a before and after for you but it isn’t completely finished. We will hopefully have the ropes on it by the end of the week.

The boys also got haircuts this week (another first for Levi)! A friend came by house and did them for us.

Levi has been keeping us on our toes this week with his crazy antics. I mentally bookmarked a few good stories from the week for you to enjoy…

One morning Levi decided to help me mop. He grabbed the mop and when he couldn’t find the bucket of water he decided to use the only bucket of water he could think of- yep, the toilet. He got a few splashes and swipes onto the bathroom tile before I could stop him.

That same afternoon we drove into town to give the boys an opportunity to get out of the house. Both Jake and I thought Levi was strapped into his car seat so imagine my confusion when I heard him breathing really loudly close to my ear. I glanced over my shoulder to find him resting his chin on my seat and staring out the front windshield. I obviously panicked and shrieked which scared him to tears. We pulled over on the side of the road and that little rascal had worked his way out of his car seat.

In other news, we had another bear visit this week. We are pretty confident this is a different one than last week as he looked a little thicker and larger. Here is a video if you want to decide for yourself:

This week Levi has taken a new interest in his g-tube…well all g-tubes really. He is continually going up to Malachi and lifting his shirt to look at his and compare theirs. Then he ventures over to Jake and I to see if we have one. He is starting to understand that not everyone has a button like he has, and I am sure that concept has to be hard to grasp.

Tonight we did a minor surgery on one of his favorite stuffed animals and gave his monkey a g-tube.

When we gave it to him his eyes lit up and he carried the monkey over to Malachi to compare buttons.

Before he and monkey went to bed he grabbed a syringe and extension and pretended to give nighttime medicines and milk to his monkey. He has such a nurturing little heart.

And one final feel good story for the week! We have been trying very hard to help Levi develop an understanding of Malachi and be a helper. We send him over to ask Malachi questions and are trying to teach him how to read Malachi’s sign language. Something has really clicked recently and he is continually bringing Malachi toys to play with, books to read that he knows Malachi loves, and just being an amazing little brother. Sometimes it brings tears to my eyes.

This week Levi went and got his crocodile game and made sure to help Malachi have a turn. I didn’t catch the original one on video because I was crying but he did it again the next night and I managed to video it:

A few months ago I read an article from the Gospel Coalition titled “When Kids Won’t Bow to Your Idols”. To be truthful, I can’t remember much of what the article said, but the title alone really infiltrated my thoughts. You can read the whole article here: https://www.thegospelcoalition.org/article/when-kids-wont-bow-to-your-idols/

But at the beginning there is a quote from Dan Allender that says “One of the biggest sources of conflict between you and your kids is when they refuse to bow down to your idols.”

I know that some of you may not have children, so change that part to “spouse” and I am sure you can find some points to relate to.

Lately I have been really trying to identify the idols in my life, and if I am being honest they are not hard to spot. What are the things that take my focus away from being Christ-like? What are the things that trigger me and why do I explode when those buttons get pushed?

Levi is like many other stubborn, strong willed two year olds. I expect those behaviors from him and recognize that they require correction and teaching. He is predictable.

But in a moment of pure honesty, parenting Malachi is where the quote above comes in. I feel shame even typing this, but I always try to be transparent and honest in case others reading are in the same situation.

One of my BIGGEST idols is control. My brain fights like a stray cat against anything that I can’t control. I haven’t always been this way, and I truly think it is a result of being a medical mom and being in so many life and death situations that I can’t control. But enough with my excuses…back on track here…

Malachi is not sleeping well at all these days. On a good day he is sleeping 5 hours, and after seven years of this I still go to bed every single night thinking THIS will be the night he sleeps a full night! And each morning before dawn when his brain wakes him up I get so incredibly frustrated. I get mad at Malachi, mad at Jake snoring in the next room, mad at life. I get mad because everyone else isn’t bowing down to my idols…my comfort, my control, my happiness.

If you really want to do some self reflection, sit down today and try to come up with 5 idols in your life. What are things that “rattle you when they’re threatened”?

The Bible warns us over and over again about the dangers that idols can have in our lives and hearts. They steal our focus away from the Lord and become something we turn to rather than Him.

This week I am going to pray for eyes to recognize my idol moments and divert that focus back towards God. He should never be in competition with things in our lives, and it is our job to spot the distractions and learn to hate them.

Please continue to pray healings and progress over my boys.

Much love,

Leah

 

 

 

 

 

 

 

Another week of tackling projects and wrangling these boys!

This week I determined to make all the phone calls that I have been putting off. The boys have appointments and surgeries scheduled at three different hospitals in Tennessee and Ohio over the next 3 months and we needed to speak with the providers to see which ones could be postponed a bit longer. Levi’s Cincinnati trip and surgery has been canceled completely and we will attempt that one again in the fall. Malachi’s orthopedic and spine surgeons in Nashville didn’t want to cancel their appointments but we did move them to July. And we were able to move 7 other Chattanooga specialist appointments to late summer.

Needless to say, I spent hours and hours on the phone. It is absolutely amazing how much Levi can get into in a matter of seconds! Trying to talk to nurses and chase around a half naked toddler who is swinging his dirty diaper around his head like a lasso is quite the challenge.

Ignore the mess in the above picture. Casualties of me being on the phone!

We had a tiny little adventure this week, which exhausted all four of us. We usually take our youth group to a summer camp in South Carolina but just don’t feel at peace about them going this year. We have been trying to figure out something else we could do with the group and we found a farm about an hour away that has all the things we would need to pull off a youth camp on a small scale with just our group. Obviously we are proceeding with planning knowing that we may have to postpone due to COVID-19.

The place has small 2 person cabins (think “glamping”/glorified camping) on the property so the teens wouldn’t be sharing confined spaces. It is set up for large weddings with plenty of outdoor places for us to congregate with the group and study God’s word. We feel like this is the direction God is asking us to go, so we are trying to put our fears aside and walk in faith with the planning for the beginning of July. The boys would obviously be coming with us and is the marker we have chosen for their first public venture out of the house.

On Monday we made the drive to the farm to look at the layout and figure out how to arrange the schedule for them. The groundskeeper unlocked the facilities for us to self tour and told us to take our time, so we ended up walking around for 3 hours. It is absolutely perfect for what we want to accomplish and we left there so excited but utterly exhausted. It was a wonderful change of pace.

In other news, the bears are back at the Carroll house. Here is a video of our newest furry visitor:

This big guy stayed for a few hours one night and I watched him closely on the cameras. He spent a little too much time hovering around the master bedroom window where Jake and Levi were sleeping (and where the shotgun was) so I went out on the back deck and yelled at him at he scampered back into the woods.

Malachi got a new swing adapter in the mail this week and has been absolutely loving it!

Here is a short video so you can hear his giggles:

And while we are at it, here is a video of my helper Levi doing one of his chores. He also helps me unload the dishwasher.

I can’t believe how much both of the boys have been growing. Levi is getting long legs and a sweet little personality. He is my shadow, following me around every step and crying uncontrollably when I leave the room. I asked him this week “Levi, why are you obsessed with me?!?” and he quickly and casually replied “You’re pretty”. Jake and I had a good laugh at that quick witted response.

Every year I have such a hard time with Mother’s Day and I still can’t fully understand why. This day is a day of rest and pampering for so many mothers around me but taking a break is something I don’t ever have the luxury of doing. Taking time for myself would mean burdening Jake and in my head I can’t justify that type of selfishness. The boys can’t turn off their medical needs, seizures, pump feedings, medications just because today is Mother’s Day. I guess this day always serves as a reminder that my call to motherhood is so different than everyone else’s…something I know and accept but sometimes mourn.

This morning Jake went alone to church and I stayed home with the boys. I could feel my emotions wavering so I decided to tackle a project to keep my mind off of things. I decided to organize the pantry which had grown embarrassingly out of hand thanks to my toddler “helper”. The distraction was working well until I dug deep on the bottom shelf and pulled out this.

The night Levi was born the nurses tried so hard to normalize the experience for me, even though it was far from normal. Levi was taken by ambulance to another hospital with a higher level NICU, Jake was home with Malachi tending to his medical needs and routine, and I was alone in a hospital with a fresh c-section wound and no baby to show for it.

They brought in this bottle of sparkling grape juice and a package of sweet things that they give to all new mothers. I remember looking at this bottle and hearing the babies and mom’s in the rooms around me and feeling so empty.

I don’t remember bringing the bottle home but somehow it made it to our house and shoved into the very bottom corner of our pantry.

As I looked at the bottle this morning I couldn’t help but imagine how special opening that bottle and celebrating must have been for the families that receive them. For me today it was such a tangible reminder of our pain and our loss of normal…a second time.

But it also served as a reminder that the devil can use even the smallest, most unsuspecting things to throw us into darkness. He can take something that was meant to elicit joy and use it to brew a jealousy of sorts that our story isn’t like everyone else’s. Verse after verse in the Bible warns us against these tricks of the devil but oftentimes we don’t recognize them until they have taken root.

These days Jake and I sleep in different bedrooms, each taking a kid. Non-traditional and definitely not ideal but necessary at this stage in life. Levi requires nighttime feeds so we are up and down dealing with his feeding pump and untangling his tubing. Malachi’s little brain is constantly misfiring so sleep for him is rare and very shallow- the slightest movement wakes him up. Having them both in the same room right now is not possible.

Malachi and I stay in the living room until he falls asleep, then I carry him to the bedroom which is getting increasingly harder to do. Last night he was sound asleep and I was getting ready to carry him back to the bedroom; he suddenly woke up with his eyes bulging out and his arms waving frantically. I could tell immediately that he couldn’t catch his breath, and when he panics like this he completely cuts off his air supply.

I snatched him up quickly to try to assess what was going on and after banging on his back a bit he took a deep, long gasp of air in and started crying. The only thing I can reason is that he refluxed a bit and when the burning hit his throat he freaked out. I got him calmed back down and he begrudgingly drifted back to sleep.

I carried him back and laid down next to him and started to cry. Why are MY children scared and suffering? Why is MY 7 year old waking up terrified because he can’t breathe? Why does MY 2 year old cry in anger every time I hook him up to his feeding backpack throughout the day, clearly wanting to run and play backpack free like every other toddler? Why does he struggle to run and do other simple physical tasks?

And then the sadness transitioned into my journey into motherhood. Why have both of my babies needed doctors to restart their hearts and breathe life into them? Why I have had to see the things I have seen? Why won’t my son be able to verbalize that he loves me?

As I dwelled in my pity party God spoke as He often does through a Bible verse planted into my soul. Last night through my silent tears He was loud and clear:

“Let us not grow weary of doing good, for in due season we will reap, if we do not give up.” Galatians 6:9

So what exactly is “doing good”? What does that look like?

The answer to that is different for each of us. Doing good is simply following in obedience to the things which God has called you to do. For me that includes caring for these precious boys in a Christ-like way. For others doing good is a completely different God assigned task. But to be perfectly honest, your “doing good” is something that will have a tendency to create a weariness in you…you will recognize it by the toll it takes on your heart.

And it is that weariness that urges you to stop, telling you that you can’t continue doing it.

But as the verse reminded me last night, in due season we will reap, if we do not give up. We have all been given a crop to grow. For some those crops spring signs of life quickly, rewarding our dreams and hard work. For others like me, we water and we watch. We weed to protect and we tend. But day after day we don’t see those sprouts of growth as we stare at barren land.

But the “due seasons” are different for each of us. And when we start comparing our crop to someone else’s we start to prematurely mourn our dry grounds and give up.

But we must remember that in due season we will reap. And it is that faith and unwavering belief that will give us the strength to water our dry ground day after day after day without ever seeing the results we expect to see.

So on this very hard Mother’s Day, I am choosing to throw away the grape juice bottles and remember that my path isn’t meant familiar to others. God is aware of my weariness and wants me to reach out my hands to Him and not let it overtake me.

Don’t grow weary in doing your good.

Much love,

Leah

 

 

Oh boy, the bears are back! They have not visited our house yet but made an appearance at the neighbors house next door early this week. Hopefully they will keep on passing through and not set up camp in our yard again this season.

Even though the weeks are monotonous we tend to keep ourselves quite busy here at the house. We have been tackling several big projects, like finishing the bedroom in the basement for future guests. We take turns as caregiver and try to each knock out something productive each day. We fill in the gaps of the day with lots of play time with the boys.

 

The therapy pool continues to be a blessing for Malachi’s tight muscles. We are SO THANKFUL that we were able to make that vision a reality for him. No regrets!

I wish you all could visit and watch him in person, because it is genuinely impressive to watch Malachi swim. I tried to catch a video for you this week:

We try to give each of the boys some independent time away from each other. For Malachi that meant sneaking him out for swims while Levi was napping. And for Levi, we spent a lot of time playing in the basement and jumping on the furniture (a therapy goal).

We also spent time this week watching the sunset in the tree house!

 

Levi is pretty on par for his age with many things, but there are a handful of physical abilities that he lacks. Jumping is a big one, but with his cerebral palsy in his ankles his hesitation makes sense. The improvements we have seen in our time stuck at the house have been shocking and encouraging.

His receptive vocabulary is continuing to grow and he is understanding so many words and sentences these days. He is still very hard to understand when he talks, but he is attempting to talk more. He is relying heavily on his sign language these days, frustrated that we don’t catch what he is trying to say immediately.

I took this video a few weeks ago of him identifying his body parts. I threw in some hard ones just to challenge him and he did great:

This morning was an exciting one as we got the chance to leave the house and attend a church service! Aside from random drives around town, the boys have not left the house since March 7th.

Our church met for the first time since quarantine at a local Christian camp for an outdoor service and a baptism. Jake and I took extra precautions to stay away from everyone else, but the group as a whole shared the same mentality and did a decent job socially distancing from one another.

We even watched the baptism from across the lake instead of joining the group.

Our church is starting the transition into the building for services so we will be keeping the boys home for a bit longer while we watch to see what happens with the virus. Stores and restaurants opened up on Friday here so we are expecting a surge soon.

Several weeks ago I had to go to the doctor for shortness of breath. They ran several tests trying to find out the cause and one of those was an EKG. The results from that were abnormal (inverted t-waves) indicating that there may be a blockage that needed to be addressed. But with no family history of early heart issues and my age the cardiologist thought it was likely just an abnormality I have had since birth that no one has caught before.

This week I completed a stress test on the treadmill to see what happened to the EKG when physical activity was added into the mix. The waves were consistently inverted and not any worse than at rest. I am waiting to hear back from the cardiologist to see if he still wants to purse a nuclear stress test when they add in nuclear meds to see what happens with activity.

As far as the boys medical appointments go, we are still doing all therapies through telemed video conferencing. Some of their specialists have reached out and started canceling appointments as they try to re-work their schedules for the summer. We are supposed to have a surgery in Cincinnati late this summer for Levi and a trip to Vanderbilt in a month to see the orthopedic surgeon for Malachi but I don’t know if those plans will change with the COVID situation.

This week I have been seeking God on some very specific things. I feel like I have been jumping all over the New Testament trying to wrap my head around several big concepts and scriptures. But one verse keeps replaying in my mind from Romans 12.

“Love must be sincere.”

It is such a simple verse but I have caught myself spending long chunks of time dwelling on those 4 words. What does “sincere” love look like? The Bible is full of instructions about love. It throws the topic around like it is something that should be easy to do, something that should come naturally when you are a Christian.

As I studied a bit I read that the word sincere is translated from a Greek word meaning “without hypocrisy”. This sincere love that the Bible mentions is a heart condition, not an action. It isn’t something we train ourselves to do, but rather it is a verb that flows from us when we start to see others through the lens of Christ.

Christ sees through all our ugliness. He can see through our defense mechanisms, our scars, our flowery words yet broken hearts. And what He sees underneath all of that “makeup” we try to paint on each blemish is a child whom He dearly and sincerely loves.

We like to put conditions on our love. When someone in public is rude to us or aggressive towards us we tend to turn away. But the eyes of Christ would see the hurting person underneath and His heart would have compassion for their brokenness.

Loving like Christ…loving sincerely…is something that only He can produce in our hearts. But as that verse says, love MUST be sincere. Not “should be”. Must be.

I will readily admit that my heart is still working on that one. I tend to love when it is easy and reciprocated. It is so incredibly easy to sincerely love my children and my husband, but does my heart sincerely love the man down the road that is harboring resentment towards me? I pray that the day will come when I start to naturally love the way Christ does, free of contingencies.

Part of being a child of God is being humble enough to see your weaknesses, the areas you still desperately need Christ in your life. There is a song that we sing to the boys often and the lyrics are:

He’s still workin’ on me,

to make me what I ought to be.

It took Him just a week to make the moon and the stars,

The sun and the earth and Jupiter and Mars.

How loving and patient He must be,

‘Cause He’s still workin’ on me.

Sometimes I need the reminder that I am a work in progress as a Child of God. I am not meant to master some biblical concepts, but I should always strive towards them with a passion! When things seem impossible or unattainable we tend to want to give up, but like Paul says in Philippians we must press on towards the goal. Not REACH the goal, but press on towards it.

So this week I am praying that God continues to work on my heart and that sincere love would flow from it. I pray that He gives me the eyes of Christ to see the hurting and the words of Christ to soothe those wounds.

How loving and patient He must be!

God bless,

Leah