This sounds a little unbelievable, but we were so busy this week I didn’t take any photos of the boys! I will be more intentional about my photo taking this coming week. The busy nature of the week took me back to the pre-COVID days as we strapped on different hats to tackle the always growing to-do list.

In our role as soccer coaches, we decided to have the girls host a blood drive for the American Red Cross. Their job was to recruit people to give blood and we set our goal at 30 donors. There is a nationwide blood shortage right now, and seeing as our family has been on the receiving end of many lifesaving transfusions it seemed like a good opportunity to give back.

We hosted the drive at the church where I work so I parked myself in the office and caught up on some office work while the donors came and went. We had nearly 45 people come through the doors to give, but several were unable to due to medical conditions or medications. Jake came to donate so we locked the boys in the office with me while he gave. He has a history of passing out after giving blood but not this time thanks to some apple juice chugging!

At the end of the drive I asked the lady if we had met our goal of 30 donors and she said we only had 29. Shockingly I passed their screening questions and got to be donor number 30! I have had a history with clotting disorders and received a transfusion after Malachi that didn’t mesh well with my blood, causing issues (kell antigen issues for any of my fellow medical nerds). I have always assumed I would not be able to give, and there is still a chance they won’t be able to use my donation but it’s worth a shot.

If you are able to donate blood, please consider doing so. Every blood donation saves up to three lives. It takes about 30-40 minutes to go through the whole process, and the actual blood donation part takes less than 10 minutes. If the Carroll clan can find time to do it, I am confident many of you can as well. I am not a fan of needles but when I look at my sweet Malachi and know how many times he has been stuck with needles it makes me feel like the momentary pain is worth it to save lives like his…if he can get stuck without whining surely I can too.

Next we put on the youth pastor hats. Now let me dump some emotions onto you for a quick second.

Back in April we canceled our reservations at our annual youth camp. We prayed about the decision and just felt uncomfortable taking the group to a camp with 400 teens from several other states while the virus was still a concern. But we felt led to do something with the group in place of the large camp.

After searching and praying, we found a rental farm 1.5 hours from here that would be perfect for a social distancing youth retreat. Everything is outside except for the food prep and they stay in tiny little cabins with one other person. We made the reservation with the fine print saying that we could cancel on June 14th without penalty if COVID was still a concern.

As June 14th rolled around Jake and I really tried to evaluate if it was a good idea to continue to pursue taking the teens there. In our rural county we have had 38 total cases of COVID but usually only 6ish active cases at the same time. For some perspective, Chattanooga is just 45 minutes away and has had a total of 2,321 cases. Overall our little sliver of God’s country has done very well. We felt led to continue to pursue the youth retreat and to place our trust in the hands of God.

Easier said than done.

I am writing this entry at midnight on Saturday evening as we won’t be able to access the internet at our rental. And all week long as we prep for this camp I can’t help but let fear creep into my heart. We are obviously taking Malachi and Levi, and will have a total of 52 teens and chaperones in the group. We have taken all the precautions you can possibly take- thermal temperature scanners, clorox wipes, hand soaps, hand sanitizer, etc. But there is that lingering thought of what if…

Each time I let the “what if” game begin I know in my heart that the devil is behind it. I can tell you with certainty that God has led Jake and I to make this retreat happen, and there is a kingdom purpose in it. So why do I continue to worry about God not protecting my family as we walk a path He has guided us to?

Fear is a crazy thing. And I have to keep reminding myself that fear is not of God. And it has proven to be one of the devil’s most successful tactics in my life.

I have to keep reminding myself that even if the worst case scenario happens- even if somehow my family contracted this virus and our sweet Malachi or our wild Levi passed away, NOTHING will happen to us that is outside the will of God. And each time I remember that simple fact, I am able to breathe that deep air again and relax.

When we start to remember that this world isn’t about us, but rather about the things God can accomplish THROUGH us your perspective tends to change a bit.

I firmly believe that God has already determined the day he will call Levi home. God has already determined the day Malachi will run and leap into the arms of Christ. So while we need to honor God by making wise decisions, we also must find rest and comfort in the timeline of God.

Daniel was thrown into the den, but it wasn’t the day that God had chosen. He shut the mouths of the lions. Even the wind and the waves obey Him.

When we walk confidently in the paths God guides us to we honor Him. So this week I am working on trusting Him and taking my steps with boldness.

Our theme for this week is “Be Bold” with the key verse being Hebrews 10:39: “But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved.”

In one week we have gone from not taking the boys outside of the house to loading them up with 52 teens and heading into the unknown. We also went from grocery curbside pick ups twice a month to me having to me making several in store Wal-Mart trips to track down 45 pounds of chicken, 60 hamburgers and 80 hot dogs (during a beef shortage), and enough food to feed 52 people 9 meals. Not to mention the toilet paper a group that size will need for a week. Let the games begin!!

And just to clarify, when we return home we will still be locking down as much as possible. There is a such thing as godly wisdom that we have to pray for. We are only making these exceptions this week because we genuinely feel called by God to do so.

Please join us in praying for protection over our entire group of 52. Pray that this is a life changing week for these young adults and that these next few days would become a part of their testimony.

And pray against the seeds of fear the devil keeps trying to plant in my heart.

Finally, this week marked the anniversary of Malachi’s Chick-Fil-A movie. I cry every time I watch it! I know we have a lot of new readers and I thought you might enjoy seeing the sweetness for yourself: https://youtu.be/_FqXgxnfzd4

Much love,

Leah

This week we begrudgingly packed up the boys and went to a necessary appointment for new orthotics for both boys. Malachi wears something called Ankle-foot-orthotics (AFOs) on both feet to keep his feet from folding up due to his cerebral palsy. With his CP his brain is telling his ankle ligaments to pull tighter than they should and the ligaments blindly obey the brain.

His current AFOs were getting tight on the ankle bone and starting to rub pressure sores on his little ankles. It was about time anyway for him to get molded for a new set so we made the appointment.

Levi’s cerebral palsy also manifests in his ankles, but in the complete opposite way. Malachi’s ligaments pull too tight, but Levi’s brain is telling his ankle ligaments to relax making his ankles loose and floppy. We noticed that he is developing some pretty intense callouses on the insides of both feet. We talked with his doctors about orthotics to help keep his ankles and feet in the position they are supposed to be in and they wrote a prescription to be fitted for them. Levi won’t have AFOs that go tall like Malachi’s, but instead his will look more like a shoe insert that extends just above the ankle.

You can really see that loose ankle issue in this photo:

It will take a few weeks to get them custom made and then we will go back in to make sure they fit right. Malachi was super excited about picking the theme that will be printed on them, but with our new orthotics company the options were very limited. We went with a fun base color and we will be adding some vinyl superhero stickers to make them just to his liking. He is oddly picky about which superheroes make the cut so we will see what kind of hodge podge mix we end up with! Seeing him have strong opinions on things brings me so much joy.

Levi immediately kicked into medical PTSD mode when we entered the office and started crying. We were able to calm him down pretty quickly with some medical gloves and silly music on mommy’s phone. I was very thankful to have Jake’s extra hands to help with this appointment.

Jake and I coach soccer in our small town and our open fields have started for the season. We are being extra cautious with these, splitting the girls into small groups and keeping our distance from them as much as possible. My mom has been helping watch the boys during practices, but the weather has been so beautiful we brought them out to play in the grass for one of them. The fresh air and different environment was a welcomed change.

Malachi has been on an antibiotic to “reset” the bacteria build up in his tummy. We were trying to find a way to relieve the tummy pain he has been having and it seemed to help a bit. But during that time on the med we did not swim in the pool (I will let you use your imagination as to why on that one). They were both thrilled this week when they got to take a dip again!

We are working on getting a covered pavilion over the pool, but for now we are limited to dusk swims when Malachi can tolerate the sunlight in his eyes. The only problem with that is that the bears have been making their appearances earlier and earlier now that the blackberry bushes that cover our property are in full swing. We have had at least 5 bears make their way down our road (that we or our neighbors have laid eyes on) just this week. So our dusk swimming adventures are not as relaxing with momma on high alert!

Levi has been keeping us on our toes like always. He is heading into a frequent tantrums phase, which is mentally exhausting. We try to keep him as preoccupied and busy as possible and give him lots of chores to do.

And we are continuing to work on his food consumption. He is trying a lot of foods but still unable to swallow them. With this bowl of cheerios he crunched them up then took them out of his mouth and wiped them on a napkin. We really have to let him call the shots on what he will actually swallow. With his vocal cords paralyzed open he is not able to protect his airway. So if a food makes him nervous, it makes us nervous too!

We just continue practicing, believing that one day those cords will start moving again.

And let’s take a minute to admire Malachi’s insanely long eyelashes.

I have been trying to organize the piles of things that accumulate, one of which being the medicine syringes. Every special needs mom has their favorite type and clings to them like gold! Good syringes that don’t fade the numbers over time are hard to come by.

As I purged the stash of ones that aren’t legible anymore I started doing the math on how many we go through in one week between the two boys. The end result is 98. And cleaning them is a bear.

We received such a sweet and touching gift this week from a blog reader in Korea! She explained that she had taken some art classes and wanted to draw a picture of Malachi for us.

What a precious gift for our family! And how perfectly does it capture our Malachi- spiderman shoes and all! I showed it to Levi and asked him who it was a picture of and he immediately responded “Chi Chi”.

But the picture is treasured for several reasons…

Through it I am reminded of the mysterious ways of God.

God has taken the testimony of a 7 year old boy who can’t walk or talk and used him to reach someone in Korea. That isn’t something I could ever do- it is an undeniable God thing.

But it also has reminded me that hope in Christ is contagious. This photo represents the Malachi my mind sees. I see the typical boy that is trapped in his broken body.

I had convinced myself that I was the only one who saw him that way….that could look past his “cant’s” and see him as whole. But a complete stranger in Korea sees him through my same hope filled lens. If there is one other person that sees my Malachi as whole then surely there are others.

When we start to see children like Malachi stripped away from their earthly brokenness we start to see them through the eyes of their Creator.

When I was in the NICU in Cincinnati with Levi I connected with a family and meeting them rocked my world. I remember the initial conversation I had with the mom, as I was pretty thick in the middle of a pity party for myself over our situation.

I asked her about her hospitalized child and she began to tell me about her unique and amazing family. She explained that she had 17 kids (WOWZAH) and that the majority of them had been adopted internationally and were considered special needs, mostly for physical reasons.

The daughter in the hospital at that time was named Madison. I had the opportunity to meet the whole gang, including Madison, and I can tell you that meeting this family had a profound impact on my heart. Madison had been put on an “un-adoptable list” due to her medical complexities but God opened the right doors and Madison’s story is unforgettable.

Recently an adoption blog did a write-up on this amazing girl and I would love for you to read about her and see her transformation. I am guessing it will touch your heart as much as it did mine: http://blog.madisonadoption.org/2020/05/27/madisons-story/?fbclid=IwAR1o2satxYZCpMNClC3uWUVeSxGfRxu3MGVm7NHw-p7iR3exVdk0VRhX-5Q

In our family, the challenges we face were thrust upon us. We rely on our faith to carry us through and we often feel like our heads are barely above water. But to see a family pursue the challenges again and again and again…what a example of the love of Christ. What a life changing love these children might not have ever known had this couple not pursued the challenged and uncomfortable life.

May we all continue to see others through the eyes of Christ instead of assigning our own values.

And may God continue to call my family towards the challenged life so that we may develop the eyes and heart of Christ.

Much love,

Leah

 

Let’s kick tonight’s entry off with a video of Levi’s newly acquired skill:

Our area has been spiking with new COVID cases so we have been staying tucked in with the boys for most of the week.

And for those of you tracking our bear visits, they have been coming in waves over the last two weeks- papas, mamas, and babies. They haven’t come within camera shot but we have been hearing them outside after dark and the neighbors have been catching a few pics. The next door neighbor sent me photos of this gigantic bear- hands down, the largest one we have seen yet. You can tell a bear’s age by the placement of the ears- the wider they are on the head the older the bear.

The other age sign to look for is their hind legs. The further out they rest the older the bear. The closer they stay together the younger the bear.

This week has been filled with a lot of laughter. Actually, laughter remains a pretty big constant in our world. I have started to see it for the gift it truly is from God, as it has such healing in it.

Sometimes we laugh because things are funny. Like goofy Levi running around in his winter hat pushing the fart button or Malachi swinging joyfully in his swing.

Sometimes we laugh when things get awkward and almost dangerous. Like when Levi uses the big soup pot as a stool and finds the giant knives we have hidden from him. Jesus take the wheel!

Sometimes we laugh to distract from pain. The pain of others, like when Levi trips over the soccer ball and hits the ground hard. Or when we change out a tummy tube on one of the boys- laughing and rejoicing like they have done something super special.

Sometimes we use laughter to ease a tense situation. Like Levi this week as he attempted his first solo ride on the horse at therapy. He was scared, yet we continued to laugh and cheer and pretty soon he too was laughing and riding with confidence.

And sometimes we laugh to keep from crying. Usually these laughs happen when I am running low on sleep and energy and something happens that is completely out of my control. Those are the “take a deep breath” moments to talk those tears out of falling from my eyes and focus on the humor of the situation. Like when we tried to increase Levi’s overnight g-tube feeds. While Jake took a quick potty break in the morning, Levi vomited in our king sized bed, tracked it (while continuing to vomit) across the house where I was sleeping with Malachi, then streaked that vomit onto that queen size bed too. In doing so, he woke up Malachi after I had spent hours trying to get him to sleep.

But in the end, the laughter is truly a gift from the Lord and one I have learned to never take for granted. When you spend time in and out of hospitals with your children there are long periods of time where laughter can’t reasonably exist in your world. When you finally come out of those dark days and have that first genuine smile and first real belly laugh you realize the power and healing of those two actions.

I can vividly remember a time several weeks after the birth of each boy when I naturally and genuinely smiled over something, and I remember those moments because my face was so physically sore after.

Facebook popped up some memories this week, and ironically enough one of them was a video of Malachi’s first laugh. As you know, Malachi had such a rough start in life. We made it home but the blows continued to hit. He developed a very rare and damaging form of epilepsy a few months after we got home and the medication required to control them robbed his personality and cognitive development from us for several months.

He was 16 months old when we first heard it…Jake was holding Malachi over his shoulder while singing and doing the dishes. I was in the living room and we heard a strange squeak come from him we hadn’t heard before. My first instinct was to grab my phone and call 9-1-1, worried that he had stopped breathing. I grabbed my phone and ran over to him to find a little smirk on his face. As Jake continue to sing we heard it again- another shrill squeak.

I will never forget what that noise, Malachi’s unique and genuine laughter, did to my mommy heart. It sparked a hope in me that I can’t explain. It reminded me that there was a silly boy trapped in that body that enjoyed hearing his daddy sing silly songs. And as the years have gone by, Malachi’s laughter has continued to grow along with his big, sweet personality.

His laughter heals my heart. It breathes life back into me on hard days.

Here is a video of one of his belly laughs from the week:

But in Genesis 18 we read a story about laughter that reminds me that sometimes we laugh to mask our grieving. It can even become a defense mechanism that morphs into a rejection of belief in the impossible.

For some context, Abraham was sitting outside his tent and suddenly the Lord appeared to him in the form of a man with two other men with him.

Then they said to him, “Where is Sarah your wife?” And he said, “There, in the tent.” He said, “I will surely return to you at this time next year; and behold, Sarah your wife will have a son.” And Sarah was listening at the tent door, which was behind him. Now Abraham and Sarah were old, advanced in age; Sarah was past childbearing. Sarah laughed to herself, saying, “After I have become old, shall I have pleasure, my lord being old also?” And the Lord said to Abraham, “Why did Sarah laugh, saying, ‘Shall I indeed bear a child, when I am so old?’ Is anything too difficult for the Lord? At the appointed time I will return to you, at this time next year, and Sarah will have a son.” Sarah denied it however, saying, “I did not laugh”; for she was afraid. And He said, “No, but you did laugh.”

Sarah heard the words that her heart had longed to hear for years and years- she would have a son! And as these words pricked the center of her heart, she rejected them with her laughter.

Have you ever had a Sarah moment like that? A dream that you cling to and treasure deep down in your heart. The years tick by and the dream stays unfulfilled. For me, that dream is Malachi’s complete and total healing. I KNOW God can heal him, but each day I wake up and see that the healing hasn’t happened I deal with that grief and disappointment all over again.

I am sure Sarah battled the same bitterness root that I catch growing in my own heart. So when her dreams were spoken aloud and promised to be fulfilled within a year it brought forth a scoffing laughter, revealing the depth of those bitter roots.

I love that God calls her out on her internal dialogue. His response is short and powerful:

Is anything too difficult for the Lord? 

But that statement also reminds me that when we allow ourselves to scoff at the impossible, or believe it too big a task, we are essentially declaring that God is not able.

NOTHING is too difficult for God….healing my severely disabled son, waking up the nerves in my two year old’s vocal cords, fulfilling the promise of a son to an old woman…nothing is too difficult for Him.

But the line after that sentence is noteworthy as well.

At the appointed time I will return to you…

Every dream we carry in our hearts, every miracle we pray for, every unanswered prayer has a God appointed time.

Our belief in the impossible is so incredibly important, but trusting the timing of God is also such an important factor of faith.

So tonight I am forgoing the laughter of disbelief and instead placing my faith in “the appointed time” when I know God will heal my boys. It may not happen on this side of heaven, but I have confidence that one day I will see Malachi run and I will hear him say “I love you”. And I will watch Levi run with ease, breathing effortlessly and jumping up and down on straight ankles! At the appointed time.

God bless,

Leah

 

This week we were able to get a break from the mundane as Jake’s parents came down from Ohio for a visit. We spent the week playing cards, swimming in the pool, and having good conversation. It really was a refreshing change of pace, especially for Malachi and Levi!

As I mentioned before, we have been trying hard to get Levi to recognize Malachi’s ability to communicate even though he doesn’t speak. This week something has clicked for Levi and he thoroughly enjoys asking Malachi questions and reporting to me what he says. I will say “Go ask Malachi if he likes the movie he is watching.” And Levi will run like he is on a mission. I can hear his little voice talking to Malachi and a few seconds later he will run back to me and give me the full report. He hasn’t grasped interpreting yet, so he will mimic Malachi’s “no” face to me or mimic Malachi’s arm movement for yes.

 

Malachi loves it just as much as Levi and their bond is growing stronger through it. Levi has always been relatively inclusive with Malachi, but now he wants Malachi to do EVERYTHING he gets to do. He is constantly making sure Malachi never gets left out. Watching their love grow is so special.

Case in point, this Elmer Fudd hat has been all the rage this week with Levi. He wears it all the time for some odd reason.

But you better believe he makes sure Malachi gets a turn, giggling as he smashes it onto Malachi’s head. Seeing them laugh together is something I will never tire of seeing.

Malachi has had a great, seizure free week (aside from his typical 3-4 a day). He has been all about watching movies and has started to branch out from the same few he watches over and over again. I got him to begrudgingly watch Toy Story and he loved it. When I told him there were three more in the movie series he was giddy with excitement. We give Malachi a list of 3-4 movies to choose from and then move slowly through the list allowing him to indicate yes or no, and he is bypassing his favorites for new Toy Story movies.

I know I am his momma, but I am so proud of Malachi. I think about how frustrating and sometimes painful his world must be yet he always gives his best. And he is always smiling. I don’t get too many photos of him these days because he requires both of my hands to support him in most activities. But when I see ones like the picture below it reminds me of how much effort he has to put forth for simple tasks. Seeing him exhausted from trying so hard makes me so proud of him.

Levi is still a pistol, always keeping us on our toes! Today I had a friend watch him (more on that in a minute) and she said he at some of his snack but didn’t finish it all. Without asking him to he dumped the rest of the snack into the garbage and put his bowl in the sink. I was so proud until she told me the next part where he went and washed his hands in the toilet. Kids have a way of impressing you and humbling you in the blink of an eye haha.

Levi really likes routines, and one he has locked in on is praying before our meals. As soon as we sit at the table he reminds us to pray and won’t touch his food until the “amen”. I couldn’t help but snap a few pictures to share with you.

Today Jake and I celebrated our 12th wedding anniversary! With our family being somewhat on lock-down we knew it would be difficult to think of something we could all go and do together like we usually do. After talking over some options we decided Jake and I would try and sneak away for a float down the river by our house.

Doing this is would require us to find someone to watch the boys- something we have never really been comfortable with. We have had plenty of offers but with their medical needs training someone to watch them would take as much time as the outing itself. We also recognize that Malachi’s seizures continue if he is uncomfortable or needs to burp (something he needs help doing) so leaving always feels selfish.

We reached out to our of our very dear friends who also happens to be a nurse and she and her husband came over and sat with the boys for five long hours this afternoon! I can’t explain to your how freeing that time was for both Jake and I. We are on medical duty 24/7, so not having to think about those things was so unusual.

We were able to have some really wonderful conversations and rehashed our wedding day, moment by moment. We also talked about our honeymoon in Montana and how one day we would love to go back to that same small town and hide from the world for a bit.

We talked about how our circles have changed as our family as evolved. Some relationships have grown apart and others have become seemingly indestructible. We both recognize that we are a hard family to be friends with. When it comes to friendship we often don’t have a lot to offer…most of our energy and emotions go towards caring for our children. We do our best but fall short in many relationships.

We talked about how thankful we are that God opened so many doors for us early on so that we could grow and explore the world as a couple. God brought us together at such a young age and we were able to develop our friendship with one another before the challenges hit.

When we started decorating our new house I decided to saturate our walls in scripture. I was browsing online a few months ago and spotted a sign that caught my heart. It said:

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

When I first read the sign my mind immediately went to my sweet Malachi. Read it again with him in mind. When Malachi was born we had a very hard talk with doctors about whether to continue lifesaving care for him, and we declared life over our sweet boy. We chose to fight as long as he wanted to fight. And we have no regrets.

I ordered the sign and when it came it I let it sit out for a few days, trying to figure out where I wanted to put it. It isn’t scripture, but when I read it I see the heart of God. And I see the heart we should have for God. I see relentless, unwavering love in its words.

Zephaniah 3:17 says “The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.”

This Bible verse is such a beautiful reminder to me that the Lord rejoices over us! He sees our flaws, our sinful nature, our dirty hearts and motives and he chooses to love us anyway. The purity of that unconditional love is overwhelming.

Alright, so back to the sign…

I walked by it day after day, reading its words and dwelling on them. And while the sign does fit for our miracle Malachi, my eyes started to see it through a different lens and apply it to Jake.

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

Marriage is a challenge. It starts out relatively easy but then morphs into something that takes a lot of consideration and effort. Putting another adult’s needs before your own is not a natural instinct and is something that takes intentional action.

Our marriage has ebbed and flowed with the tragedies and victories we have faced. The more our focus gets distracted from each other and redirected towards our boys, the more I see the importance of the phrase “I’ll keep choosing you.”

Marriage isn’t a one time ceremony. It is a daily decision.

So that sign ended up above our master bed. Seeing it daily reminds me of the effort I need to be putting forth in the relationship. Seeing it also reminds me of the value I hold in the eyes of God.

The love of God is a beautiful thing, whether you are receiving it or giving it to others.

Please continue to pray for healing for my boys. Sometimes I forget to pray for their healings, as I am distracted by the minor aches, pains, and diagnoses.

God bless,

Leah

 

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.

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.

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.

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.

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.

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.

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.

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