Sufferings

Jake and I have been talking this week about how much progress we have seen in both of the boys in these last few months at home. Either they are making huge strides, or we kept ourselves too busy to notice- seeing such huge changes has been so good for our mommy and daddy hearts.

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Levi started confidently running this week! It is probably the cutest little run you will ever see. He tucks his little arms up and can get a little out of control but in his mind he his as fast as lightning. His cerebral palsy has impacted his ankles so he runs on the inside of his feet, but it is a functional run and he gets more stable each day. Here is a sweet video for you to see him in action:

Levi is also in an imitator phase and copies everything he sees others doing. It is actually entertaining to see the things he tries to come up with. We don’t listen to headphones but he must have seen some of the youth group teens using these when they used to come over.

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Malachi’s cognitive speed is increasing daily and seeing such clarity in thinking for him is just so special to watch.

 

He is so incredibly intelligent, so we have been working hard to teach him to have a voice. We give him options for everything we possibly can and try to wait patiently for his signs. We are also trying to teach Levi that Malachi has a voice and send him over several times a day with a question to ask Malachi. We tell Levi to watch for Malachi’s signs and it has become a fun game for the two of them. Malachi LOVES when we understand the things he is trying to communicate.

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This week I messed up a bit and didn’t completely communicate to Malachi about our plans. One afternoon this week we had to run by his school to pick up his things. I had forgotten about this time frame and was reminded by a text his teacher sent 30 minutes before it ended. I plopped the boys in the car and headed over, not explaining to Malachi what we were doing. When we got there he had it in his head that he was going to get to go into the school like normal, which obviously we were not going to do.

And boy was he MAD!! He kept signing no and making it very clear he was frustrated with me. We worked through it and by the time we left we got a smile out of him with his teachers.

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We spent the majority of our week outside enjoying the fresh air. Levi is getting bolder each day and actually let us swing with him this week!

And we have picnicked on the front porch almost every meal this week. The bears haven’t been back for a visit so I guess we are doing a good job at cleaning up.

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Poor Jake’s to do list has been overloaded with random projects my mind keeps creating. This week he had to use several power tools, something Malachi thoroughly loves. I parked him over by Jake so he could get close to the sounds and be a helper. Jake let Malachi have a turn with the power drill and he was overjoyed.

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Here is a video:

We also spent time watching the sunsets from the pool. Jake has been working hard on back filling it and getting it prepped for phase 2 (adding an overhead structure for shade for Malachi’s eyes). Every time we use it we talk about what an amazing gift this has already been for Malachi. It brings him joy but it also is so helpful for his tight tone.

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Jake and I have been trying to make an effort to do a daily devotional together, something we used to do early on in our relationship but have slacked on in the last few years. I remember freshman year of college going to a local Christian bookstore and picking out Bibles together in the same translation. We used to meet up in between our dorms on a park bench and each read the same chunk of scripture, underlining things that stuck out to us or pricked our hearts. After we finished the chapter we would talk through each of the things we underlined, and it was always so refreshing to hear one another’s hearts. I love looking through those Bibles and seeing all the pen marks, knowing that God was building our relationship to be grounded in Him.

Anyway, Jake and I started Romans a few weeks ago and yesterday we hit Romans 8. It took each of us longer than normal to read through it individually, as there are so many incredible verses to think through in that chapter.

When it came time to compare verses we had several in common, but one in particular pricked both of our hearts…

Romans 8:18 “For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.”

Jake and I looked at each other with knowing eyes when we came to that verse. Before our special boys came along I don’t think I ever could relate to this verse. You grow up reading verses like these that talk about suffering, but never really knowing what suffering truly feels like.

I can tell you now with certainty living a life that contains continual suffering is horrific. Our hearts break each time Malachi cries out in pain from a tummy ache, or suffers another seizure leaving him confused and sad. Each time we hand one of the boys to a surgeon we do so knowing the suffering that they are about to endure post op.

Watching someone you love suffer feels somehow worse than being the one to go through it. Or at least that’s what my mind has determined.

But as Romans tells us, the suffering we are going through now isn’t even worthy of being compared to the glory of eternal life with Christ. Sometimes I catch myself focusing on the suffering now instead of focusing on what is to come…complete and total healing for both of my boys. When we shift our focus from earthly to heavenly things it reignites our hope.

If I hadn’t seen the suffering I don’t know that I would long so much for heaven for my family. The scenes continue to play in my head of the conversations Malachi and I will have, the walks we will take, the singing we will do together in the throne room. I like to think about running my hand over Levi’s smooth, tube free tummy and hear his clear and effortless breathing as he runs the streets of gold with his big brother.

These sufferings now can’t even be compared to what is to come.

Our sufferings have the ability to deepen our roots into Christ if we view them with the right eyes.

Please continue to pray for our little family. We are working on scheduling the surgeries and big appointments we have missed and it looks like we will be back in the operating room for Levi in August. We need prayers for health and strength leading up to these big appointments.

And if you get time this week take a look at Romans 8 and see what God might be wanting to point out to you!

Much love,

Leah

 

 

 

Spirit of Fear

Another week full of smiles and fun!

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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.

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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.

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

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

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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.

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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…

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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.

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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.

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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

 

Bow Down

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.

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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.

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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.

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

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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…

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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.

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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.

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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.

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

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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.

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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

 

 

 

 

 

 

 

Doing Good

Another week of tackling projects and wrangling these boys!

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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.

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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.

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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.

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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!

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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.

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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.

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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

 

 

He’s Still Workin’ On Me

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.

 

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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!

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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).

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

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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.

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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.

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

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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

Our Time in the Den

I am not quite sure when a house officially becomes a home, but it is safe to say that ours has officially made the transition. I think this quarantine has had a lot to do with that. This is hands down the happiest our little family has ever been- and we didn’t even realize what we were missing out on until now!

We decided to take a leap of faith and sell our log cabin back in 2016 with the goal of building Malachi a fully accessible home that could grow with him and his needs. By the time we moved into our house I was 7 months pregnant and Levi came just a few short weeks later. With his medical complications it was a long 5 months before I got to come back to the house and with the dozens of appointments between the two boys I don’t know that I ever fully got the chance to take a deep breath and enjoy being in such an accommodating environment.

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It is like I have fresh eyes as I look around at all the details of the house that have made life so much easier…things like the diaper chute, the laundry chute, and the wheelchair access. This week has left me thankful for so many things. Last night I put both of the boys in the wheel-in shower, but recently they have been bickering about who gets the water stream when we do dual showers with them. Levi cries when the water isn’t directly on him, and Malachi tries to hit Levi when he is hogging the stream. Last night though I remembered we have a dual shower head and I was able to get both of them spraying enough to keep everyone happy. When we made the plans I didn’t know I would one day have two bickering boys in that shower fighting over the water.

The boys are absolutely loving the simplicity of our days. If it is warm enough to swim we head out to the therapy pool around sunset. We figured out this week if we wait to swim until right before bed both of the boys sleep better.

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We also realized that Malachi enjoys swimming so much more at dusk when he can open his eyes all the way. He is legally blind but extremely sensitive to light, especially the sunshine. We plan on covering the pool eventually with a roof so he can swim comfortably but for now we will do sunset swims until the bears start to come out. They usually start showing up on the porch in mid April, but so far no sign of them at our house! Our friends down the road had a massive one show up this week so we are being extra cautious.

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We are still doing nightly wagon rides, spending hours in Malachi’s tree house, and playing on the front porch digging in the rocks. We try to keep routines in feeding schedules and revolve most of our plans around medication times.

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Jake and I do a lot of tag teaming throughout the day as we try to accomplish all of our work duties here from the house on limited internet. Jake has 3-5 zoom calls a week, I usually have 2-3 for the church, and the boys have at least 5 for therapies.

The boys have been cracking us up with their mischief. Levi is a imaginative little boy who can find a way to get to just about anything out of his reach. But they have such sweet and tender moments together that are so beautiful to watch. Levi has taken on several caretaker tasks for Malachi, like helping me medicate him and take off his shoes at the end of the day.

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And boy, do they laugh together! Levi kisses Malachi on top of his head at least a dozen times a day. One day this week he had just polished off a bowl of Cheetos and when he kissed Malachi I said “Ewww now you got Cheetos in his hair!” They both started to squeal with laughter and Levi ran over to repeat the scene to make his brother giggle more.

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This week Facebook memories reminded me of some really happy times in our life and some really hard times. Memories are one of the hardest parts about being a special needs mother.

This week when I close my eyes I have these flashing images of Levi’s lifeless 4 pound body as a doctor stood over him, manually breathing for him. He had coded just shortly after we arrived on the air ambulance to Cincinnati. Watching his chest rise and fall is an image that I will likely never be able to forget.

But this week it has also popped up some pretty amazing photos of baby Malachi during his NICU stay. When I see those photos they automatically bring up emotions. While there were some pretty traumatic times in the NICU for both boys, April was a great month for baby Malachi. He had an eye surgery and his second brain surgery in the same week 7 years ago but when I see these photos they bring back such a joyful feeling in my heart.

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This week as I looked into the eyes of that sweet boy I remember that hopeful feeling that brewed inside of me in those early days. I just felt so strongly in my heart that Malachi would defy the odds. I just KNEW that he would fully overcome his complications and be a completely normal and healthy little boy. I firmly believed that God would heal him.

When I look back at those photos now with the knowledge that I have about special needs and things to look for I see “it”. I see the things those nurses likely saw in my warrior boy.

This week I am thankful that God leads us one step at a time. I couldn’t have handled the full picture seven years ago. I am so thankful I don’t have the weight of foreknowledge on my shoulders. Seven years ago that hope that he would be typical fueled me.

But as God has led us step by step on this journey he has built the “muscles” He knew I would need to handle the reality of our life. He has re-built my broken heart in a beautiful way. He has refocused my eyes on where the value of life is found. He has redefined contentment and introduced me to His peace.

I am sure that each of you have those reflective moments in your own lives where you look back and thank God for keeping things hidden, whether good or bad, until the time was right.

Every night we read the boys a Bible story from the “Jesus Bible”. If you haven’t heard of it, this book walks kids through each of the stories in the Bible and ends each one with a reference to Christ’s love for us and death on the cross.

Tonight we read about Daniel and the lion’s den, one of Malachi’s favorites. Daniel is one of the most authentic characters in the Bible and has made an impact on my faith. In fact, Levi’s middle name is Daniel in honor of Jake’s father but also because of the power behind that character in the Bible.

I think about Daniel and his decisions throughout his life to continue in obedience to Christ despite the consequences. What if Daniel had a glimpse of being tossed into the lion’s den…would that have impacted his faith? Would a glimpse at me staring into the eyes of a 7 year old in the middle of a seizure have impacted my belief that he would be fully healed?

Like Daniel, sometimes the next chapter in our story needs to stay safely tucked away so we can practice growing those muscles of our faith. Our journey with God is a process and powerful faith doesn’t often come the moment we are saved. It is in these dark moments in our own lion’s dens that we have the chance to see those muscles in action.

So today I want you all to join me in being thankful for the things God chooses to keep hidden until the time is right. May our faith continue to grow mightily so when our time in the den comes we won’t bat an eye.

Please continue to pray for safety over my family as the country begins to slowly open back up. We will still be keeping the boys in for several more weeks but Jake and I will each have to make contact with the outside world and need prayers of protection and wisdom.

Much love,

Leah

Reset

I somehow managed to take a ridiculous amount of photos this week without even realizing it! So I guess I will let the photos drive this week’s update! And not that it really matters, but just as random piece of information- we buy Levi adapted onesies for his g-tube and they only come in black. So although it looks like we never change him I assure you we do! Same with Malachi’s new big boy bibs- we purchased several in his favorite prints.

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After I posted the blog late last Sunday night our area got hit with some pretty bad storms. We had tornadoes touch down 20 minutes south of us, 20 minutes west of us, and 20 minutes northwest of us. Thankfully it did not travel near our home. We braced for the impact of the storms down in our basement, trying to get the boys to fall asleep on a king sized mattress we dragged out onto the floor. They were both fueled by the change in routine and thought we were on a grand adventure. Malachi was the most amped up, not falling asleep until after 3:00!

Our most exciting report of the week is summed up best with this photo.

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Today was our first day trying out the new therapy tub. We still have a lot of dirt work to do, but we just couldn’t wait any longer to go for a dip! It is a heated therapy pool so we set it at 101 degrees (it was 55 outside) and tried a 30 minute swim. I wish I could have filmed Malachi’s face to share with you all, but I did snap a few pictures.

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I haven’t seen him that happy in a very long time. He never stopped smiling. Even when we talk about it now he starts giggling.

Jake and I both had been back and forth this week about whether or not we had made a wise decision in purchasing the pool. It was one of those grand ideas that, when it started to take shape, turned out more involved than we expected. While we did have some major help from a local grant we did pull a chunk of money from savings to help make it happen. And each day as I looked at the pool out the window I said to myself “what were we thinking?!”

But today I watched Malachi transform from a boy with a disability to a 7 year old who could swim independently. Aside from his pure joy (that has lasted all day) his body is already different than when he started out this morning. His tightness caused by his cerebral palsy is so much more relaxed and that was after just 30 minutes! If we can create a more physically comfortable life for Malachi than it is worth it, without a doubt.

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Our goal is always to give Malachi the best life he can have in the time he spends with us on earth. This pool is a huge part of that and I can’t wait to see what fun memories we will make as we splash as a family.

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Levi hasn’t been around water much, so he was very cautious and wanted to stay in his float. But he loved the water and was very upset when we got out. He has been asking to go back in the pool all evening.

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We spent the majority of our week outside, passing the time with walks, bubbles, bike and wagon rides, and games.

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Levi is growing by the minute. He is still a skinny little guy but he is getting so tall!

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And he never stops eating. It is actually pretty fascinating. We are making HUGE progress with his food intake and we haven’t adjusted his feeding tube schedule at all. He is also drinking thin liquids without showing any signs of aspiration. It would be a dream come true for us to eliminate the need for his feeding tube and go to only feeds by mouth.

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He even started brushing his teeth independently this week which is such a big step with his oral sensitivity.

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We also let everyone help bake a batch of cookies. Such happy boys!

We also spent a lot of time reading Bible stories and using our imagination in the play room.

Overall it has been another refreshing week for our family. We went on a few drives into town to do a grocery curbside pickup and a curbside Target run but we are still hunkering down and trying our best to avoid germs and people.

My medical tests were scheduled for tomorrow morning but insurance has denied them. We are working on getting it all sorted out but we have yet another delay. I just keep believing that this all will be done in God’s timing. I have a few other unavoidable appointments that I have to go to this week but Jake will be able to stay home with the boys.

I was talking with a friend this week and we were talking about how strange it feels to not see friends throughout the day. And while it does seem foreign to many people right now, I keep flashing back to the various times in my life where my world has been suddenly interrupted. Days when I woke up in my own bed thinking it would be a day like any other but didn’t get to lay back in that same comfy bed for 4-5 months.

But this has been different. There have been no hospital stays, no surgeries, no talks with doctors, no stress. No life or death decisions have to be made. And the biggest change is that everyone else in my circle is experiencing the exact same thing as me! Each time life has whisked me away to a hospital with one of the boys life goes on for everyone else. When I usually return to normalcy I realize that everyone else’s lives haven’t skipped a beat and it always caused me to mourn a bit more. But this time is different. When we all emerge from this quarantine we will all have those fresh eyes as we look at the new world around us.

I think about all of the times in the Bible when a character had a “reset” from God.

Noah and his family emerging from the ark after 40 long days, staring at a world that didn’t look the same.

Jonah exiting the belly of a whale and realizing that the very thing he was trying to run from was still there.

But tonight I want to share the story of Zechariah with you!

The Bible tells us that Zechariah was a priest and his wife’s name was Elizabeth. It tells us in Luke 1:6 “Both of them were righteous in the sight of God, observing all the Lord’s commands and decrees blamelessly.” It sounds a whole lot like the start of the book of Job when I read that line.

The Bible also tells us that they were childless and both very old. One day when Zechariah was burning incense to God in the temple an angel appeared to him and said “Do not be afraid, Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son and you are to call him John.” He went on to say some amazing things about what John would do in his life in verses 14-17 if you want to read over those verses on your own.

But I want to move on to Zechariah’s response in verse 18: “How can I be sure of this? I am an old man and my wife is well along in years.”

The angel replied “I am Gabriel. I stand in the presence of God, and I have been sent to speak to you and to tell you this good news. And now you will be silent and not able to speak until the day this happens, because you did not believe my words, which will come true at their appointed time.”

Boom. His voice was gone. God had hit that “reset” button and Zechariah would not speak again until after his son John the Baptist was born. John wasn’t even conceived yet!! So it is safe to assume that Zechariah’s reset lasted at least 9 months.

The baby was born and several days later the neighbors and relatives asked what the boy would be named. On a tablet he wrote the words “His name is John.”

The Bible tells us in Luke 1:64 “Immediately his mouth was opened and his tongue set free, and he began to speak, praising God.”

Did you catch that…the first thing Zechariah did after his reset was praise God for all to hear. He didn’t focus on the frustration and discomfort from his time without a voice- he focused on the praiseworthy.

It goes on to tell us that he was filled with the Holy Spirit and began prophesying. The first line of that prophesying starts with: “Praise be to the Lord, the God of Israel, because he has come to his people and redeemed them.”

While our reset may look very different than Zechariah’s, how will we emerge from it? Will we be the same person, or will we allow ourselves to be changed, praising God about all of the things we are expectantly waiting for Him to do?

While resets can often be uncomfortable, they can also be so incredibly refreshing! It is an opportunity to refocus and emerge from it a different person.

Unless you are a Leah Carroll, this may be the only reset opportunity you will have so start to spend time NOW thinking what you want to look like when we come out of this strange time of rest. Start to think about the things you will say when God gives you your “voice” back. Will the first words off your tongue be proclamations of God’s goodness?

I know for me, this period of rest has highlighted a lot of things that need to be changed. The things in my life I assumed I wasn’t doing because I didn’t have the time, I am still not doing. It has caused me to re-evaluate my priorities and drive. It has also highlighted the simple things in my life that truly bring me joy and comfort, and those are things I had taken for granted.

But the biggest hidden blessing in this reset is the opportunity for me to dwell on the small things that God has done in my life. Those are the things that tend to get overlooked, or overshadowed by the big things.

I am in rambling mode. The moral of the story: how is this time of rest changing you? Is it changing you? Do you find yourself drawing closer to God or has the distance from church and routine taken you further from Him? What has this reset revealed to you about your walk with God? I want to challenge each of us to try to do a little self evaluation this week and find/create the many things you wish to praise God for when he returns your voice. What will we be able to shout from the rooftops?

Much love,

Leah

 

Because He Lives

This week we successfully did tele-medicine sessions for the cardiologist, the neurologist, physical therapy, hippotherapy, and speech therapy for both boys. It is so much more efficient than loading up the kids and driving them to the children’s hospital! I don’t know if the new ways will continue once the virus threats have passed but I am really hoping so.

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Quick Leah health update- the cardiologist said there is a possibility that I have an abnormal EKG (I have inverted t-waves for any of you medical nerds) but it isn’t a health crisis yet, which has put my mind at ease. We are still working to get an echocardiogram and a nuclear stress test scheduled to rule out any major issues.

The boys have been keeping us busy this week. We have done tube changes, hair cuts, and Levi has had at least a dozen showers from all the messes he gets into. But no worries, he loves them! He could spend hours in there.

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We are still doing nightly walks and spending as much time outside as we can.

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As you can see in the above picture, we are still working on getting the pool ready. We will have electric done by Tuesday and are hoping to do the back-filling and leveling this week. We filled it up today and are hoping to have the first swim in it next week. I will definitely try to get photos of the inaugural swim.

The boys have been bickering a lot lately which is pretty entertaining. Levi can get a bit rough with Malachi (sometimes intentionally and sometimes not) but this week Malachi has been fighting back, bopping Levi enough times to put a healthy fear into him. They are also both very opinionated about sharing with each other.

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But don’t worry, they still love each other deeply! Their sweet moments outweigh their time-out worthy ones ten to one.

We did go on one adventure this week, and it was so refreshing (yet exhausting) to all four of us. Before the virus hit we had big plans for our annual youth group egg hunt all over town. Since we weren’t able to make that happen safely for the kids Jake and I decided to “egg” each youth members house. We drove all across our county hiding two golden eggs in the yard of each teen. Inside each egg was a stack of raffle tickets.

We messaged them before we came by so we wouldn’t get bit by a dog, shot by a dad, or interacted with. Then we texted them after letting them know they had been egged and to start hunting. They had about 24 hours to find the eggs and we did a raffle drawing at 8pm on Saturday and gave away several prizes and electronic gift cards.

The adventure took us over 5 hours to tackle but was absolutely worth it. The teens were texting us all afternoon for hints and thoroughly enjoyed the challenge of trying to find their eggs. We were in a menacing mood and hid them in really hard to find places. Not to mention the fact that we are out in the country and some of our youth have over 10 acres. Needless to say, we had to give lots and lots of hints. But they all really enjoyed the break from the quarantine norm.

Today is Easter Sunday and I have been emotional all day. I don’t think I even know why…

When I reflect on the things Christ endured for us it breaks my heart. I am so thankful that I didn’t witness his horrific death on the cross. But I am also so jealous that I didn’t get to witness his resurrection!

If you aren’t familiar with the Bible, there are several books in the New Testament that cover the same stories, but from different author’s perspectives. They are called the synoptic (same) gospels. It is always so fun for me to read through all four accounts of the same story and see the similarities and differences. If you want to give it a try, the resurrection of Jesus is a great one to tackle. You can read about it in Matthew 28, Mark 16, Luke 24, and John 20.

Today we sat down as a family and read the “Jesus Storybook Bible” with the boys. We started with Christ’s death on the cross and read all the way through his ascension into heaven. Levi ran around eating crackers and throwing legos but Malachi clung to every word. He especially liked it when we got to the part that talked about the angels. There is not a doubt in my mind that he knows exactly what that encounter was like as he too has spent time in the presence of angels.

Seeing Malachi’s excitement as we read the story took my mind to the moment he will get to meet Jesus. I think about the smile on Malachi’s face as he runs towards Jesus. And I think about those open arms and grin on the face of Christ as He embraces my sweet boy. What a beautiful moment that will be.

In Utah there is a very special tombstone for a little boy named Matthew. Matthew was very similar to Malachi and passed away at 11 years old. His father wanted his grave to be a place of happiness rather than sadness and designed this tombstone.

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When I look at this picture I get emotional.

My prayer is that both of my boys learn to not fear death. I pray that they always look up, expectantly waiting for the day they get to see Christ face to face. And I pray that God gives me the knowledge and grace to teach them about Him.

So this Easter Sunday I am overwhelmingly grateful for that empty tomb. That empty tomb reminds me that nothing is impossible with God. That empty tomb reminds me that this world is temporary. And the empty tomb re-ignites my excitement for the pain free life that Malachi (and we all) have to look forward to.

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I want to end this entry with the words from the song “Because He Lives”. Easter 2013 was an extra difficult one for me as we were still living in the Ronald McDonald House in Chattanooga. Malachi was 9 weeks old and had made it through some very difficult days. Jake and I wanted to worship with our church family on Easter Sunday but I didn’t want to leave Malachi’s side. I remember how hard it was to make the 1 hour drive to our small town for the service.

As the worship started I was doing my best to keep my heart focused on God and not on the fact that Malachi was in the unit without his mommy. When we started to sing this song I couldn’t hold back the tears! The song has some beautiful reminders for all of us.

God sent His son, they called Him Jesus
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.

How sweet to hold a newborn baby,
And feel the pride and joy he gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.

And then one day I’ll cross the river,
I’ll fight life’s final war with pain.
And then as death gives way to victory,
I’ll see the lights of glory and I’ll know He lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone!
Because I know He holds the future
And life is worth the living just because He lives!

Much love,

Leah

 

Accepting Trouble

I am so happy to tell you that we officially have a therapy pool for Malachi! It was quite the process but it was fun watching God align all of the plans for us to make it possible. A local grant was able to contribute a significant portion of the cost and some very dear friends have donated the labor to prep the yard for us. We will have the electric installed this week and then we will be ready to fill that sucker up!

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It will take a little work to figure out the best way to make it accessible, but we have lots of ideas brewing. We also have some backfilling to do this week!

On Monday morning the concrete truck came and Malachi was overflowing with excitement when he heard that big truck.

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He is so incredibly aware and very excited about the pool. He also loved the day the crane came to deliver it.

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Levi loves to see Malachi happy. When Malachi starts laughing, Levi wants to be near him and simply watches him with a smile on his face, clearly sharing the joy with his brother. Levi showers Malachi with kisses all day long on the top of his head in such an endearing way. He sure does love his brother.

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We are also seeing all the many ways in which Levi takes the extra steps to include Malachi. He brings toys over to him and plays with them next to Malachi to make him smile. Like the fart machine…

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He also is so aware of the things that make Malachi happy. Like when the Mickey Mouse Clubhouse song comes on, Levi stops everything he is doing and races over to Malachi to help him do the infamous hot dog dance at the end of every episode. He knows that makes his big brother smile.

Here is a sweet video of Levi saying “please”. He has been talking so much lately and his words are getting more clear.

We have officially settled into the routine of self-isolation. Jake has to continue creating virtual lessons for his students but he thinks he has found a way to do it from home on our very painfully slow internet. And other than a quick trip to the church office to check messages and upload sermons onto the church web page, I have not left the house this week.  As I left the house and saw this view again I was reminded of how blessed our family truly is.

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We are trying to create routines for the boys so there is some level of order in the chaos each day can bring.

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Jake has been sleeping in the master bedroom with Levi and Malachi and I sleep in one of the other bedrooms. Their schedules are not in sync right now so separating seems to be the most logical option. Levi goes to sleep around 9:30p and stays asleep until 7a. Malachi has been staying up until at least midnight each night, sometimes 2a and sleeps until 6:33 on the dot. Thankfully I usually take the afternoon nap with Levi to make up for the lack of sleep.

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Each night around 6:30 we go play in the driveway and the boys go on a wagon ride with Jake. We were able to rig it up for one of Malachi’s adaptive seats and they love going on “lion hunts” each evening.

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The sun hides behind the house enough to shade the area for Malachi and I take his switch adapted toys out there for him to play with.

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Levi has discovered the joy of playing in the rocks and loves to ride his bike.

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He is also really loving bubbles!

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Levi keeps us on our toes in so many ways. This week he has been obsessed with the fridge and freezer, specifically the ice cream. I know when it gets quiet to go looking for him in the kitchen. At least 6 times a day we find him with his head in a carton of ice cream.

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We have also started tele-medicine sessions with each of the boys therapists. It’s a little different and unique trying to do therapy through a screen but simply letting the boys see some friendly faces makes their day.

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Speaking of tele-med sessions, tomorrow morning I will be speaking with the cardiologist over the computer and working to get a nuclear stress test ordered. My breathing was great the first half of the week but started acting up again on Thursday evening through Saturday. I am eager to find out what is going on, but also want to avoid all medical environments right now.

We officially have three cases in our small county, and 21 cases in the county we do all of our errands and shopping in. The county we take the boys to for their medical trips has 74 cases and 4 deaths from the virus. We are continuing to pray Psalm 91 over our family and friends and are trying really hard to practice faith over fear.

I always try very hard to be honest on these posts, so tonight I am going to share some things that have been swirling in my heart this week. They definitely won’t put me in the faith hall of fame, but in my moments of weakness maybe you can draw more strength for your battles.

I know I have talked about this before with you all, but I remember being a young teenager and reading the book of Job. I was floored that Job lived such a righteous life that God noticed him and actually bragged on him to the devil. I remember reading the intro to that story and praying that I could catch God’s eye in the same way. I prayed that I would develop righteousness and be a topic of conversation between Him and the devil.

But as we see in the story of Job, righteousness does not always equal an easy and problem free life. In fact, it was the righteousness of Job that the devil detested and the reason he brought horrific attacks on Job’s family.

I don’t know that I fully understood the weight of those prayers and sincere ambitions all those years ago.

I have watched God write a Job story for my life over the last 15 years. As we raced to the operating room to bring a tiny, lifeless Malachi into the world at 24 weeks I remember praying the words of Job “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.” I was so scared that my Job story would also include losing my children and was trying to brace myself to continue to try and pursue that righteousness that makes the devil cringe.

If you continue to read through the story of Job you will see that he passed the first several waves of trials that came his way. And he never cursed God, even though the devil’s attacks were brutal.

God continued to brag on Job’s righteousness and the devil turned up his attacks a notch. God said to the devil, “Very well, then, he is in your hands; but you must spare his life.” While this sounds like God was flippantly careless with his righteous servant, instead it shows how much confidence he had in Job’s faith.

Although I have very clearly seen God’s hand of protection over me through each and every trial, life has been challenging. I have always found so much comfort in reading this part of Job’s story and reminding myself that God determines the day I leave this earth, not the devil. The devil may attack me, he may wound me, but he cannot take my life. He doesn’t hold that power.

When God gave me these two special boys I felt so deep in my heart that He wouldn’t call me to this big task and not protect me in it. I always had this confidence that, like Job, God would keep the devil from taking my life.

But with these recent health issues and a less than perfect EKG, likely caused by the stress of this hard life, it has started to make me second guess that confidence I have always carried. I started to wonder, what if I am not really a Job? What if I am one of Job’s kids- someone that dies to help create someone else’s Job story?

What if Jake is the Job in this story and part of his trials will be losing his wife and raising two special needs kids alone? Has God put parameters on the devils attacks in my life and health?

These thoughts put me in a dark place this week. As that confidence in God’s preservation of my role and life started to waver I started to allow fear to creep in.

I felt it creeping in, and for the first time ever I wondered if it was warranted fear. My faith has not been shaken, my belief that God holds me in His hand has not changed, and I fully believe that God has numbered my days and I won’t make my exit until the day He has determined. But I started to wonder if that day was going to be sooner than I imagined it would be. Who would take care of Malachi? Who would meet the medical needs of Levi and advocate for him?

In Philippians we read,”the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” So this week I have been praying for the peace of God to enter me and trump my thoughts (both irrational and rational).

None of us can predict the mysterious ways of God. And many of us will drive ourselves crazy trying to do that very thing…to use context clues and gut-feelings to try to see into our own futures. But part of faith is allowing your heart to experience the peace of God and allowing it to do it’s job at guarding our heart and minds.

Job says something really powerful to his wife in chapter 2 that keeps playing in my head:

“Shall we accept good from God, and not trouble?”

The good things in life can strengthen our faith in a mighty way. But the trouble in life has exponential power to strengthen our faith in ways we can’t fathom.

It’s when we are truly able to accept both the good and the bad from God that we start to develop that righteousness God likes to brag on.

Clearly I am not there yet, as I am having a hard time accepting the trouble right now. But that’s what prayer and the peace of God is for.

Please keep our family in your prayers this week as we continue to try to stay out of the path of this virus.

God bless,

Leah

 

The Lord Is My Refuge

As the number of cases near our small community increase, I have felt my anxiousness also increase. As of today there are no confirmed cases in our small town.

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But with social distancing being in effect it seems all of the towns around us are flocking to our area to go hiking, boating, sightseeing, and picnicking. Our roads have been packed with visitors so I can’t imagine we will remain virus free as a community for long.

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The boys have been officially on lock down for 16 days and we have zero intentions of taking them out of the house for several more weeks. Jake and I have each left 2-3 times this week for various necessary reasons but have only had to go out in “public” with others one time each. We have been trying some different methods for still connecting virtually with our youth group and I have been doing as many secretarial tasks from home as possible since the office is closed.

I know we may be a minority here, but we are perfectly content being locked in house together for an undefined amount of time. This is our safe place, and the only place I can let my guard down. Levi’s energy is boundless so we have to be creative to come up with ways to keep him preoccupied.

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He is eating like a teenager, which is so great! He eats something off our plate every meal and while we have had a few gags and vomits for the most part he has managed the food better than ever before. It is so much easier to keep the boys on their tube feeding schedules while we are home.

Here he is wearing a pair of daddy’s underwear on his head.

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Levi successfully pooped in his potty this week, much to our amazement! We are still trying to figure out how to navigate potty training with his tummy tube. We keep him in onesies to keep him from pulling on the tubing/tube so it isn’t a quick and easy process to plop him on the toilet. And I can’t let him walk around naked because he will have access to the tube and yank on it. I am hoping as he gets older he will be able to understand not to touch the tube and I can dress him in a simple shirt and pants.

We tried taking the boys for a drive to just get them out of the house but when Levi realized he wasn’t actually going to be able to get out of the car he lost his mind and screamed so much he couldn’t catch his breath. He ended up choking on his saliva during a screaming episode and threw up so we abandoned our drive and went back home. That is the last time we will attempt that for awhile!

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We had some rain this week but as soon as that lightened up we did a little Wild Raptor riding in the driveway. Malachi was so excited and didn’t want to quit.

I normally don’t put sad face pictures on here but I thought you would like to see Levi’s sweet little face when he gets in trouble (on the left above). He isn’t supposed to leave the pavement on the porch and he ventured into the gravel requiring me to call him over. Sweet boy.

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Malachi has been having some really good days lately. He is sleeping 6-7 hours each night, which is excellent for him and his seizures have lessened tremendously now that he isn’t moving from place to place so often. He even took a nap this week which is so rare. Most importantly, he has been really really happy having the whole family home all day.

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We made some progress on Malachi’s therapy pool this week! The hole is ready and we are hoping they will be able to deliver it and put it in the ground by Friday. We won’t fill it up right away, but even these baby steps are so exciting!

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The boys both really loved the small “tractor” that moved the dirt. The men were hammering poles into the ground so Levi ran in to get his hammer and nail toy as well.

We have been reading a lot of books this week, one of Malachi’s favorite things to do. We found a video of a guy reading one of his favorite Grover books so I filmed a bit so you could enjoy it with him.

We also broke down and purchased Disney Plus for Malachi and so far (crossing my fingers) it is streaming pretty well on our poor internet connection. Watching a new movie each day is something he looks forward to when he wakes up!

Walking confidently with God isn’t always an easy thing. I have had several “Peter walking on water” moments this week. I have declared and stepped out in faith, but I will readily admit I have looked down at the water a few too many times and not kept my eyes on Christ. It seems like each day I have to remind myself that while our world is spinning out of control right now, God is still in control.

I have been struggling tremendously with anxiety this week. Several states around us have been posting protocols should there be a ventilator shortage, and people with disabilities are being placed on the low priority end of the lists. I don’t think that Malachi or Levi would intentionally be denied or discriminated against unless it was absolutely necessary; but the idea that they are having meetings and listing which lives are devalued over others hurts my heart in an unexplainable way. These are such unprecedented times that we are in.

I am always very open and personal on this blog, and while I have hesitated about a dozen times about sharing this with you I feel led to as it has been a faith shaker for me this week. But I am going to respectfully ask that you allow me to offer updates on this situation and not ask for more details throughout the week(s).

Last weekend I started having a little trouble catching my breath. I tried to brush it off but the breathing spells continued to come and go to the point where I considered a trip to the emergency room. Every time I weighed the pros and cons I just couldn’t justify going to the ER. The risk to my boys was just too high so I continued to try to convince myself it wasn’t a big deal and would go away.

Unfortunately it didn’t go away and I started to worry that I had developed another blood clot that had traveled, possibly causing a pulmonary embolism. The statistics for an untreated PE are not good with 1 in 3 untreated PEs leading to death. I knew that I needed to go in but was an emotional basket case as I processed how to do so without exposing myself to the virus.

God worked for me and opened doors, getting me in to see a doctor who was able to write for an outpatient CTA scan. I still had to go to the hospital for the test, but instead of entering through the ER I was able to go to the main building which is a little more protected from the active virus cases floating in and out. I will spare you the boring details of the many protocols I took to make sure that I was doing everything in my power to protect  my family.

My bloodwork came back great and the lung scan showed no clots, thank the Lord! But there were some abnormalities on my EKG that will need to be investigated a bit further this week. Again, please don’t text or call asking for updates- it is still a stressful situation for me and one I am not ready to have discussions about.

If you know anything about our story, I am sure you can imagine how difficult the decision to go to the hospital was for me. I literally worked out statistics in my head, trying to decide if potentially passing away at home from a PE rather than risking catching the virus in the ER was a better option. I know that sounds so irrational but a momma mind under stress can do some crazy things.

I spent hours in the closet crying, trying to figure out what to do. Jake and I talked about quarantine plans should I be hospitalized. The stress of the situation absolutely consumed me and put me in a dark place.

One night I was having another breathing spell and was trying hard to distract myself from it. I opened my Bible and began to read Psalm 91 and seriously thought I was hallucinating…the scripture was literally what I needed to hear from God. The next morning I doubted again that the words were THAT spot on for my situation so I read it again…and again…and again.

Take a minute to read these words:

 Psalm 91

Whoever dwells in the shelter of the Most High
will rest in the shadoof the Almighty.

I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

Surely he will save you from the fowler’s snare
 and from the deadly pestilence.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.

You will not fear the terror of night,
    nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
    nor the plague that destroys at midday.

A thousand may fall at your side,
    ten thousand at your right hand,
    but it will not come near you.
You will only observe with your eyes
    and see the punishment of the wicked.

If you say, “The Lord is my refuge,” and you make the Most High your dwelling,
no harm will overtake you, no disaster will come near your tent.
For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone.
You will tread on the lion and the cobra; you will trample the great lion and the serpent.

“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.
He will call on me, and I will answer him;
I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”

These verses exude a confidence in Christ that I found myself lacking. It was a boldness I remembered seeing when Jesus approached the lepers- he did so without fear and without hesitation.

As I drove to the hospital I continued to replay these words over and over again in my head, praying that God would send his angels to cover me and that He would keep all virus germs from coming near my tent.

But being transparent here…confidence in Christ is SO HARD! It is so unnatural. It is one of those concepts that is great in theory, but when the moment comes to put that theory into action you have doubts. Like Peter, you are tempted to look down and look at the lurking danger around you rather than focusing on Christ.

It is in these hard moments that I see God yet again refining my faith. There are still pieces of doubt and control in me that need to be removed- they keep me from fully committing to a constant pursuit of (and trust in) God.

Please keep us in your prayers this week as we navigate a world of germs. Jake will be starting his virtual teaching this week but will have to go to his classroom to work on some things. I will have to enter the outpatient hospital setting for more tests. We will both have opportunities for contamination so we are asking that you pray protection over our family, and particularly our boys.

God bless,

Leah