The Carroll boys had a great week! With so many medical appointments each week I get really excited when we get a whole 24 hours without having to be at a doctor’s office or therapy…this week that special day was Friday. It feels so nice to just spend some time at the house being “typical”.

 

Levi is mobile now, pulling up to standing and doing his best to take cautious steps while clinging to furniture. He is also officially into EVERYTHING…his favorite place is the pantry, particularly the baking shelf…I caught him sucking on the brown sugar bag earlier this week.

Levi’s new favorite game is climbing Malachi. I took this picture of him playing in his canoe and I stepped out for about 12 seconds and came back to find him like this.

We also went to battle again with the bears this week. Most of the time when they come up to the house it is in the middle of the night while we are sleeping. But for some reason they have been coming up shortly after we get home at night, between 10:00p-11:00p. I was able to finally get a good look at the one that visited Friday night; he looks like a teenager, not too big and not too small.

I tried beating on the window right next to it’s face but that only deterred him for about 3 seconds so I got out the 12 gauge shotgun and took a shot into the air on the back porch (we would NEVER kill the bear or actually shoot him unless he was threatening our lives). The sound made him start to run for the tree line but after a few steps he turned around and headed right back to the porch. I fired another one a little closer to the trees he was near and that one kept him away for the rest of that night.

It is in situations like these that I can’t help but laugh. Our life is just bonkers.

On Saturday Jake had the opportunity to go to an Atlanta United FC game in downtown Atlanta. My brother lives on the outer edge of Atlanta so we decided that all four of us would make the trip and the kids and I would spend time with my brother and his family while Jake went to the game.

Malachi really enjoyed seeing his cousins and listening to them play. I tried letting Levi play in the grass, which as you can see didn’t go so well.

My brother’s sweet dog Kenya snuck over and gave Malachi a bath of kisses. We pulled him off of Malachi and asked him if that scared him and Malachi animatedly signed “MORE”, smiling ear to ear. Malachi absolutely loves dogs!

Jake and I adopted a dog back in 2006 and named him Boomer, a german shepherd mix. When Levi was born and then went on to spend nearly 5 months in the hospital we had to send him to stay with Jake’s parents in Ohio. Levi was discharged but we still didn’t feel like it was the right time to bring Boomer back home. We were afraid with all the wires Boomer might accidentally pull something out of/off of Levi. It was a tough decision but leaving him in Ohio a bit longer seemed like the best decision.

When Levi was cleared to go off daytime oxygen we talked about bringing him home. I have missed him so much, and I know Malachi has missed his puppy dog.

Unfortunately Boomer passed away suddenly on Friday night. I am so disappointed that I didn’t get to see him again. I know he is just a dog but he was such a big part of our lives prior to having kids.

Malachi was able to make it to school several days this week and on Thursday they attempted graduation pictures for all of the Kindergartners. They sent home the order form and I looked at it all week trying to decide whether to play the optimist and believe they will be exceptional, or play the rehearsed part of pessimist and assume the lack of a good picture would devastate me.

In true Leah fashion I made my mental pros/cons list. As I thought long and hard, my mind started to transition to that weird place that special needs moms tend to go sometimes. I caught myself considering “What if this is the only ‘graduation’ that Malachi will live to see?” These thoughts sound so morbid when I repeat them to myself, but the reality of them keeps them coming to mind.

So I wrote the check and pre-paid for those silly graduation pictures.

Typical parents dreams about the long lives that their child will live. As a mom of a warrior, dreaming about a long life for my child brings me so much anxiety. I don’t ever pray for a specific number of years for Malachi, but rather I focus on the quality of life that he has during his time on earth. I pray that God blesses him with a pain-free life filled with joy! And I pray that if God chooses to allow Malachi to live a full, long life that surpasses mine that He prepares the way before him.

My biggest desire is that Malachi always feels loved, wanted, and valued. I pray that others see Malachi through the eyes of God his creator.

Luke 12:17 says “Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these.”

There is so much hidden beauty that our eyes often miss when we search for the “perfect” in our world. Sometimes God’s beauty speaks louder in the mundane and even the ugly parts of our lives…the stark contrasts allow it to stand out.

Malachi is a beautiful wild flower, clothed in a beauty that only comes from God.

When my mind wanders like it does to possible outcomes for Malachi’s life I often feel a pang of guilt allowing those thoughts into my head. But my heart needs to process these things and allow these brief moments of mourning.

Please be in prayer over Levi this week as we prep for his surgery #22 and #23 (I think…I might have lost track). The surgeon will be working with the muscles of his right eye attempting to straighten it out a bit. We will also be scoping his throat to check his vocal cords to see if there is any new movement or anything else we can trim in his airway. I am starting to feel anxious about surgery day which leads to an emotionally exhausting week for all of us!

Please join us in praying for miracles and routine, best-case scenarios. These are expected to be outpatient which is always a blessing.

Much love to you this week,

Leah

 

 

Happy Easter everyone!

And I am happy to report that Levi tolerated the bow tie! And with his curly hair it gave him a very sophisticated Albert Einstein look.

In years past we have blazed through Easter without a second thought to the gimicky side of things, but on Thursday Malachi came home from school with a bag full of Easter eggs (dinosaur ones at that!) and he was so excited to open the eggs and find candy inside. He was so intentional with his movements to break each one open and was giddy with anticipation about what might be inside. I took a butter knife and shaved all of the candy into melt-able slices for him to snack on. I asked him if he wanted to share some chocolate with his brother and he was very quick to tell me no. He did sign that I could have some though, so we are making progress on our sharing.

Seeing his joy over the eggs reminded me that I need to do a better job at creating memories and experiences for Malachi. It is easy to assume that he won’t get into holidays if I don’t build them up but somehow he seems to know a whole lot about them. The only thing I can think of is that he gets the concepts from his cartoons.

 

So off to the store I went to build an Easter basket for each of the boys. They each got a book, bubbles, candy, and a special toy. Malachi couldn’t contain his excitement so I caught a quick video to share with you:

You all know our history with family photos- it rarely goes well. Today was no exception, but the laughter I experienced looking at each of these photos made it worth it. We even caught a few with Malachi’s “Hulk” tummy tube cover showing.

Tonight our church hosted a community outreach event and set up different egg hunts for different ages and abilities. Malachi and his other wheelchair buddies had an egg hunt with balloons taped to the eggs so he would be able to snag them easily from his chair. With Jake’s help he ended up with a handful of balloons and eggs.

He has been ecstatic about those silly balloons!

Levi also got in on the action getting a handful of eggs. I was busy getting the other hunts started so Levi’s best buddy from church offered to help.

As you can see, Levi is still doing great off of oxygen during the daytime. The oxygen concentrator that we have in our home is big, noisy, and spits out a lot of heat. Since it isn’t being used in the daytime I now flip it off during the day. One night this week I completely forgot to turn it back on and headed to bed. Levi was asleep and stayed at really high levels so I didn’t even realize the oxygen wasn’t on until he had a quick dip down to 92 (anything above 88 is still considered acceptable). We are seeing some huge improvements!

I am absolutely determined to get this kid wire free. This week I have been trying to come up with a plan to keep him from being hooked to his feed bag 18 hours a day. Step 1 has been increasing how much volume he gets pumped in him in an hour. I don’t want him to be miserable with something his tummy isn’t used to so this has been a slow process.

I have also been trying a few bolus feeds here and there. With a bolus feed you simply hook up a syringe and pour in some milk. Instead of a machine slowly sending it in over a few hours, gravity takes it into his tummy over the course of about a minute.

This carries risks for Levi; if I send in too much at once and he vomits there is a chance he can’t protect his airway (since his vocal cords don’t move) and it would go into his lungs. I have only been doing one hour worth of food (2 ounces of milk) at a time and ONLY when he has a completely empty tummy. So far he has tolerated it very well! We will keep fiddling this week and trying to make some progress.

Malachi has been having some gut issues and we aren’t quite sure what it may be. It has been going on for several weeks but with no other symptoms I have been hesitant to take him into the pediatrician’s office. I spoke with his GI doc this week and he had me bring some samples by for testing. I am hoping we get an easy answer.

And as if our week wasn’t crazy enough, the bears are apparently out of hibernation and stopped by for a visit on Tuesday night. They usually come by the house between 12am-4am but this one came by shortly after Jake got home from soccer one night around 10pm. I had cooked salmon for dinner and he must have caught a sniff of it in the wind. So back into high alert mode for the Carroll clan! We have some security cameras set up outside now so hopefully I will be able to get better pictures than last year.

Malachi and Levi have been two mischievous brothers this week and are learning how to tag team to accomplish things.

When we decided to go the gimicky route for Easter, I talked a lot with Malachi about the holiday and what it meant. I told him that lots of kids like to use their imaginations and pretend, just like he does when he pretends to be a superhero. And they pretend that their is a big, giant bunny that brings an Easter basket to their door and that’s a big reason of why they get excited about Easter.

I explained to Malachi that we know that the bunny is pretend, and instead we choose to celebrate how much Jesus loves us! I think he is a bit too young to understand the details and the “why” of Christ’s death so we just focused on the great love that Jesus has for Malachi.

Malachi is so eager to learn these days, so as I talked to him about all of this he listened very intently. I always wonder what questions swirl around in his beautiful little mind. I can’t wait to have conversations with him one day and hear his thoughts on things instead of guessing at them.

This morning as I processed the significance that this day brings, I found myself thinking about the day from the perspective of one of his disciples.

Christ hinted several times to them about how he was going to die and rise from the dead three days later. I want to give the disciples some credit here and tell you that Christ used words that confused them, but that is just not true. In fact, the words He spoke were very plain and simple:

“Now Jesus was going up to Jerusalem. On the way, he took the Twelve aside and said to them, ¹⁸ “We are going up to Jerusalem, and the Son of Man will be delivered over to the chief priests and the teachers of the law. They will condemn him to death ¹⁹ and will hand him over to the Gentiles to be mocked and flogged and crucified. On the third day he will be raised to life!” (Matthew 20:17-19)

These word must have fallen on deaf ears, because Christ’s death on the cross wrecked these men. Their hearts were mourning over the loss of their friend, their teacher, their Lord. They were so confused…wasn’t this man supposed to be THE ONE that changed everything?

As I read this scripture today and processed their emotions I realized how relatable the situation was to me in my spiritual life. How many times has God spoken to me with a promise, then something happens that didn’t lead to that outcome and I begin to question and doubt. I even begin to panic, much like the disciples did, instead of trusting that He would make good on that promise.

But here’s the thing….God always keeps His promises. Every single time. Without exception.

When Malachi was a few weeks old and fighting for his life in the NICU I remember vividly laying in the bed at the Ronald McDonald House and praying that God would restore Malachi’s brain and make it whole. God spoke so clearly that night and said “It has already been taken care of.”

The next day I strutted into the NICU with my head up high, knowing that they were about to witness the miracle that God had shared with me the night before. Malachi had a brain scan and the doctor came in to deliver the results. I was so confident and so sure. But the doctor explained that the brain damage was much worse than the previous scan and more of Malachi’s brain had died off.

When I look back, I see that as my “disciple moment”. That moment rocked me. This wasn’t what he was supposed to say. This wasn’t how it was supposed to go.

There are two ways you can look at situations like these:

#1 Get frustrated that God didn’t keep His promises

   or

#2 Recognize that the promise is still on it’s way

Part of faith is always believing in the promises. It is hearing about what is to come and believing with all of your heart- and not just believing it but waiting and watching for it.

Faith is expecting…even when the promise seems impossible. My faith tells me that Malachi’s healing has already been taken care of, but exists on a timeline that is hidden from my view.

Maybe this whole concept feels very unrelatable to you. Maybe you haven’t had a Ronald McDonald House Moment and heard God speak. And that is absolutely okay. For me, it is a rare occurrence and one that still absolutely fascinates me.

But God speaks through scripture! Have you read His words and looked for the promises in them? We can’t expect God to speak to us if we aren’t seeking.

My challenge for myself this week is to seek more of God and listen to the things He is pushing my heart and mind toward. To listen to his promises and strengthen my faith enough to fully believe that He will see it to completion.

And boy, am I thankful that He kept His promise to the disciples on that third day. What a glorious day that must have been.

God bless you this Easter,

Leah

 

 

 

 

One of the things I try hard to focus on each week in my blog entries is being authentic. I could paint you a pretty picture with carefully chosen words about the beauty that blankets our days. While there are breathtakingly beautiful moments every single day, there are also those moments that twist my heart in painful ways. While I can’t eliminate all the ugly we do try desperately to make sure the good outweighs the bad.

This week we had to put a lot of effort towards that balancing act.

Let’s start with some moments of beauty. Malachi got the chance to paint a horse at his therapy session this week. Once you know Malachi you learn how to read his looks. You can tell in these how focused he was. He is very much into writing his letters these days, so writing them on a horse was an even bigger deal!

Levi has been pulling himself up to standing all week! He also has lots and lots of looks to offer…as you can see, he has the look of determination down pat.

Levi also got to go on some boat rides around the house this week; here is a video of his adventures:

Malachi was all smiles at one of our soccer games this week. I love that he smiles with his whole face.

Levi was upgraded to a big boy car seat! Before I get any concerned emails about chest clip placement please know that we were in the kitchen when this photo was taken, simply working on strap height adjustments before we put it into the car. We are safety conscious, so don’t fret!

The boys looked particularly fancy this morning for church. I have matching bow ties for their Easter outfits next week but I suspect Levi won’t be a fan.

Oh Levi, always watching. Always.

Switching gears to the rough patches…

I met with Levi’s eye doctor this week to talk about treatment options for his eyes. Levi was born with a congenital airway birth defect called bilateral vocal cord paralysis. At some point in the first few weeks in the NICU he went without sufficient oxygen and part of his brain started to die off. The spots of damage are very small (based on the scan at 3 weeks old) but we aren’t entirely sure how these spots of damage will affect him long term.

We have discovered though that his brain damage is affecting his eyesight. He has two different eye issues, the main concerning one being that his eyes do not work together to see things. This is simply a brain wiring issue, and there is no way for us to ever correct that issue. However there are some things we can do to try to help get both eyes focusing on the same thing; the goal of this being that his brain recognizes the benefit to seeing one thing with both eyes and re-wires itself.

Levi will undergo eye muscle surgery on May 3rd. At this point we are only going to operate on the right eye slightly but recognize that we may have to in for several more of these surgeries before we get it “just right”. This is also one of those issues that can reoccur at any time, any age. If we do not correct it he will not be able to develop depth perception.

Both eyes are also a little “lazy” so we are supposed to be patching each for 30 minutes a day until they get stronger. The worry is that one eye will overpower the other and vision loss in the weak one will occur.

We take lots of pictures of Levi and at least 70% of them get deleted because his eyes are a little wonky. Here is an example; nothing too crazy, but slight enough to recognize. In this photo it is the left eye turning in but most times it is the right.

We finished up the eye appointment with a whole three hours to kill before our next two appointments. There is a big mall nearby and I thought the boys would like all the busyness that malls can bring. We walked around the mall a few times, ate at the food court, then headed back out to the car to leave for our appointment.

I was literally thinking “Wow, I just rocked that mall trip!” And as I lifted Levi from his stroller to put him in the car seat I heard a loud pop. I looked at his face and it contorted into a grimace of pain. I sat him back down immediately, worrying that his stomach tube had popped out but not wanting to actually look as the whole idea freaks me out.

I reached my hand onto his tummy and swiped it to find it not only flat, but pouring out milk. The tube was no longer there. My heart started to beat fast as I looked for it, and both Levi and I spotted it at the same time. He reached to grab it and put it in his mouth, which made me start dry heaving. I snatched it away before he succeeded, making him cry even harder. The harder he cried the more the milk inside his stomach continued to squirt out.

At this point I was mentally trying to grasp what to do next. I have been trained on changing their tubes, but interestingly (not the right word) enough I had just taken their emergency tube kits out of the van and put them in the house two days before. I looked for a syringe to deflate the balloon and try to re-insert it but couldn’t find anything.

The tube has to be reinserted within 1-2 hours or it can only be done surgically. I was 45 minutes from home/spare tubes and only 30 minutes from the hospital so off to the hospital we went.

Levi munched on his toes while we waited, likely starving since all of his tummy contents had emptied. We finally got it reinserted within the time frame and all is well. I have learned my lesson and put their spare tube kits back into the van!

On Thursday Malachi had some adjustments done to his wheelchair. We want to preserve Malachi’s body from long term positioning issues, but in order to do that we have to use horrible looking devices. We recently got a special positioning collar that holds his head up. It definitely does its job, but I find myself having a hard time actually putting it on him as I don’t want him to be miserable. There is just no way that can be comfortable.

Levi also met with pulmonology on Thursday…lots of trips to the hospital this week! Levi’s sleep study results were excellent with zero spells at a half liter at night! His carbon dioxide retention levels were still in a completely normal range.

So switching back to a good…

Levi has been cleared to trial off daytime oxygen! We are on day three and so far he has done wonderfully. We are keeping him connected to his pulse oximeter to monitor his levels. When he is awake his oxygen saturation stays at 100 and when he is napping it is between 96-98. When he goes into a deep nighttime sleep we put his oxygen back on, as he isn’t ready for that yet.

It feels SO GOOD to have one less wire to worry about. He looks so much different!

Since Levi will be going under anyway on May 3 for eye surgery we are going to try to coordinate his throat scope for that same hour. It is always nice to be able to combine surgeries and have less anesthesia rounds.

Malachi has started playing a new game of waiting until we have a full syringe hooked to his tummy tube and flinging his fist to punch it out of my hand. It then flies all over him, which he just giggles at. It has been a messy week. Little stinker.

I know I mention this often in my blog, but one of the biggest things I struggle with is disappointment. I have this picture in my mind of how things will go and inevitably they never go that smoothly. The disappointment in those moments makes me so angry…like throw things across the living room mad.

This week I had a whole lot of disappointing moments to work through. By the time Friday rolled around I was on the verge of an emotional meltdown. I kept feeling it coming on and tried to regain control only to have the waves hit me hard again.

Dealing with disappointment is the most damaging thing in my relationship with my kids, relationship with Jake, and relationship with God. It brings out a side of me I do not like.

Today is Palm Sunday, the day that the town of Jerusalem welcomed Jesus as he rode into town on a donkey. They waved palm branches to honor him, laid their coats down on the road for before him, and exuberantly shouted:

 

The people were all so excited that the prophecies they had heard about all of these years were finally going to be fulfilled! Here was the king they had been looking for…they one they were promised long ago.

And just days later they would demand that he be crucified, nailed to a cross. And you know what likely played a part in that sudden change of heart?

Disappointment.

This morning there was a minor emergency with the new children’s director and she had to leave the service quickly. On her way out the door she explained that she was leaving and asked if I could cover children’s church for her. I had three minutes to figure out what I wanted to teach these kids, and this concept of disappointment has been laying so heavily on my heart.

I talked to them about the significance of Palm Sunday and as we talked through Good Friday one of the kids interrupted and asking “Ms. Leah, why did the people love Jesus then hate Jesus so much?”

I explained it like this…

What if I told you Humpty Dumpty was going to come into the room for a visit. He was going to come in and sit on a wall, and likely fall, and all the kings horses and all the kings men wouldn’t be able to put him together again. That’s the story we all know, right? We have heard it over and over again as children.

What if that door opens and in walks Humpty Dumpty- the snowman.

The kids all said “No, no, but he is an egg!!”

But is he an egg? There is nothing about the story that tells us what he looks like, or what he is made out of. It is something that has been passed down in illustrations that people have put in storybooks. It is something that our parents told us, or an image that we created in our minds.

Maybe Humpty Dumpty was actually just a snowman.

I explained to the kids that the people in Jerusalem had heard this story for years and years about the king that would ride town. They were looking for a king who would swoop in and establish his kingdom. A man that rode in on a strong white horse, adorned with jewels. They likely pictured someone authoritative, not like the meek and humble man that rode in on the back of a young donkey. They pictured a king who would rule with an iron fist, not a man who taught to pray for those who persecute you.

The man they saw in front of them no longer fit the picture they had created in their minds. And just like I do when I am disappointed, they got more and more angry.

I don’t think that it is sinful to create ideals in our minds. It isn’t a sin to long for things to turn out a certain way, or to even pray for specific results for a request. To the contrary, I think it brings God joy to hear us share glimpses of our hearts with him.

But when our ideals don’t match God’s then the slope can turn slippery. It is in those moments that we are reminded that God is guiding us in a very calculated and specific way, even though the scenery doesn’t match what we had pictured in our minds.

I will continue to struggle with disappointment. It is a big part of my life, and each and every day my boys aren’t healed by God I feel a flash of that pain. But my responses are something I do need to have better control over, and that is something I will be in prayer over this week.

The Lord is near to the brokenhearted and saves the crushed in spirit. -Psalm 34:18

Crushed in spirit is such an accurate way to describe our week. But as this verse says, God is right next to my broken heart, still holding my hand and leading me to green pastures.

My prayer this week is literally Psalm 23:

 

 

 

 

In true Carroll family fashion we jam packed our schedule this week with medical appointments and fun!

As I have admitted several times before, I am a recovering control freak. Against my will, I have really had to let go of those urges to control every detail of life and learn to go with the flow. The special needs momma life doesn’t allow me to share emotions with anything other than my kids. But I still get a thrill from establishing routines and successfully implementing them!

Mondays have become a routine acceptable day with work in the morning, physical therapy sessions for each boy around lunchtime followed by a trip to the grocery store. But the highlight of my Monday is having a “lunch break”. Special needs mommas (well, mommas in general) don’t get the luxury of established mealtimes. I usually get to town for therapies with 8 minutes to spare and if the line is short enough I run through the Chick-Fil-A drive through. And then I sit for a glorious three minutes and eat chicken in the parking lot at therapy. It is a little odd that parking lot chicken brings me so much joy. It actually has nothing to do with the chicken and more to do with the success of being able to eat at a normal and acceptable time.

Tuesday we met up with Malachi’s High School Robotics team to watch them demo the competition robot they built. Malachi loved listening to the robot as it sounds very much like his Wild Raptor ride that the team adapted for him.

Speaking of the Wild Raptor, the weather finally cleared up enough for us to start taking it outside! Malachi loved the independence it gave him to go way ahead of momma on our walk.

Then tonight we took it to a friends house so he could show off his moves.

While Malachi is not currently sick, he is still recovering from last weekend’s junk. When he gets something like a common cold it can mess with him for several weeks before he gets completely back to normal, which is why we are extra cautious about germs. Nighttime is hard for him as laying down makes it hard for him to breathe. I have been propping him up in the bed next to me but he is still waking up 8-10 times per night panicky because he can’t catch his breath. He signs to me that he is sad/scared and I hold him until he calms back down. It has been a long and sleepless week for Malachi. His seizures are also very intense each morning as he works to process the congestion that settled in overnight.

At feeding therapy this week he signed NO to everything that we offered him. He even declined chocolate, which is very unlike him. The only thing he signed YES to was blue juice- he loves to drink it because it turns his tongue blue which he finds hilarious!

We are still working on weaning one his seizure medications and one of the improvements we have seen is his eyesight. Malachi has Corticol Visual Impairment meaning his brain is what is causing him to be blind- not a structure issue. The more we reduce his seizure meds the more that fog lifts from him. After his horse therapy session on Wednesday I got on the highway and Malachi jumped in his car seat when we passed a semi. He usually can’t see those in his peripheral so that is huge!

Levi is still wanting to be attached to me 24/7 which is making therapy sessions difficult. He doesn’t want to work with any other adult, especially if it means he can’t be in my arms.

 

We had a small victory tonight when he contentedly sat with a friend from church! Baby steps.

Levi had a developmental evaluation done on Friday to see where he is at with his milestones. We don’t have the results quite yet but even this week we are seeing some new things. He is starting to pull up on things and stand for brief periods of time. I took this video to share our success with you:

We also resumed our feeding backpack training sessions this week with a cool new Spiderman feeding backpack. I just put the feeding pump and bag inside and it toppled him like a turtle each time he tried to move with it on. We will keep trying though!

 

This week Levi has some big appointments with the eye doctor to talk about eye surgery and the pulmonologist to get sleep study results and schedule throat scope in Cincinnati. Malachi will also have some modifications done to his wheelchair, and of course lots and lots of therapies.

We also had lots of play time this week. Levi braved the swing with Malachi for the first time ever.

We also did some sensory play with spaghetti, and he threw it all over Malachi. We were still finding chunks of it on Malachi’s head and outfit an hour later.

Saturday was a beautiful day so we went to the soccer fields to watch my 6 year old niece play. Malachi practiced his cheers from home, shouting “GO”. This sounds a little crazy, but it was the first time Levi sat on grass. He went into sensory overload and didn’t enjoy it but maybe it will get better over time.

A few weeks ago I started following a family that had two children with trachs and extensive medical needs. I believe firmly that every special needs momma needs a network, and this momma’s story touched my heart. They recently lost one of the two boys and were selling shirts to fundraise for an adoption. I ordered one for Jake, Malachi, and I and this week the package came in the mail.

Jake came in from work and picked up the package that I had not yet opened. He asked “What is this?” and I explained that they were the t-shirts I had ordered from this other family. He opened the shirts and read the front which reads:

“And if not, He is still good.” based on Daniel 3:18

As Jake read the shirt tears welled in his eyes. Those words mean so much to our sweet little family. And what a testimony they are to the faith of this other family that lost their warrior.

Our life thus far has been a “If not” scenario. We have prayed, begged, pleaded, and bargained for miracles from God for our boys. We have struggled to breathe through our sobbing, shaking uncontrollably from head to toe with uncertainty. We have dirtied our knees praying on the floors of hospitals for miraculous healings that never came. We have lived the “If not”. Every day that I wake up to Malachi having yet another seizure is an “If not” day. Every squeak from Levi’s little throat when he is upset reminds me that he is still an “If not” kid.

God has not yet healed my boys.

The “If nots” look different for each and every one of us. They are the things in our lives that we have asked God to change or remove but they still remain. They are the huge requests that continue to go unanswered to our human eyes.

I don’t know why God hasn’t healed my sons yet. And while I still firmly know and believe that He can, we are still in the “If not” phase of life.

The “If nots” are what make or break your faith in God. Those are the moments that you make a choice to continue to stand firm in your faith or allow the disappointments to shatter that faith.

But as these beautiful shirts remind me: “And if not, He is still good.”

God’s goodness isn’t based on whether we get the things we think we deserve from him. We must trust that God’s plans for us are bigger and greater than our own.

We must believe and trust that there is unimaginable purpose in the “If nots” of our lives.

And even when the “If nots” make us weak in the knees and take our breath away, our faith in God’s plans must be strong enough to shout to the world that He is still good.

So tomorrow morning I will most likely wake up to Malachi having another large seizure…a blatant and physical “If not” moment that reminds me that his brain has not yet been made whole by God. So tonight I will ask God for the grace and strength to honestly proclaim that He is still good.

I want to challenge you to speak those same prayers to Him over your “If not” moments this week.

And please say a prayer for our big appointments this week. Scheduling surgeries is always hard on my heart. I know the surgeries are coming, but when they are given a specific date and space on the calendar it even harder to process.

Much love,

Leah

 

Levi is “helping” me type this post so if something seems amiss it is likely the result of his crazy fast raccoon hands.

Which leads me to the next  two words: separation anxiety. Part of me feels flattered that Levi wants to be touching me 24/7. Then the stressed out mother side of me can’t quite figure out how to appease his 16 month old demands and keep up with Malachi’s needs.

The ever creeping in mommy guilt tells me that this is a result of his nearly 5 month hospital stay in Cincinnati. No child should ever have to wake up and not have mommy close by to comfort him. I have to purposefully not allow myself to mentally go back to those months- it puts me in a dark place and reminds me that I couldn’t be the mom I wanted to be for both of the boys.

We have set up Levi’s crib just a few feet from my side of the bed so I can watch him closely at night. He is hooked up to all of his monitors but I am still an anxious mess with the wire management and safety issues. Last night I woke up around 3am and he was silently leaning as far as he could, arm through the slats of the crib to try and touch me. At first it freaked me out then I couldn’t stop laughing. Sweet little Levi.

I invested in a portable baby play yard for him, particularly when I am at work. He discovered the copier recently and loves to open and close the drawers when mommy is printing important papers. Thankfully he tolerates it pretty well as long as he can see me at all times!

This week we have started trying to get Levi used to a feed backpack. He is on his feeds for 18 hours a day and chasing after him to make sure the bag doesn’t get caught on things when he crawls is increasingly difficult. If we can get him to start wearing his pump and feed bag then that safety factor is eliminated. It didn’t go so well, but we will keep trying! And ignore the mess in the background of every photo I post. Toddler life.

Malachi had a great week that morphed into a rough weekend. He woke up on Friday night with a fever that stuck around through the weekend. He also has some respiratory junk going on causing his seizures to increase. Even when he is sick, he stays in great spirits so we have been camping out at home all weekend watching cartoons and playing with toys. Lots of Mickey Mouse Clubhouse “Hot Diggity Dog” dancing.

On that note, there are a few cartoons we avoid because they have so many physical commands, like “Everyone get up on your feet and jump!” We never want Malachi to feel the sadness of not being able to do what they ask, as he is very aware of what they are asking him to do.

One of the shows we limit watching is Little Einstein. He LOVES that show but they ask for your help to power their rocket. You have to pat your hands on your lap and increase the speed to get the jet to go. With Malachi’s vivid imagination he takes these tasks very seriously so we always make sure to help him with the actions.

Since he hasn’t been feeling well we thought we would treat him and let him watch several episodes. At one point I forgot to pay attention and help him power the rocket, and he wildly started hitting my leg to remind me. It is in these moments that I see the excitement of a six year old shining through.

He has been extra opinionated about what he wears lately, which is also fun to see. I give him two options for each thing he gets to pick out: his tummy tube dressing, his shirt, and his bib. He uses his NO sign to tell me which one he doesn’t want. He takes such pride in what he picks out to wear and we love giving him the independence of making that choice. As you can see, we are pretty biased towards superheroes right now.

Both of the boys rocked their appointments this week! Malachi’s hippotherapist has been blown away lately by how well Malachi is progressing. She told me with wide eyes this week, “He is just a completely different kid!” This week he got to feed his horse some treats which brought a big smile to his face!

Malachi had an appointment with his epileptologist (neurologist that specializes in epilepsy). This was our first appointment with him since we started Epidiolex (the CBD medication) about 5 months ago. We talked about the pros and the cons that we are seeing, and how mostly it is all positive progress. The CBD medication can mess with the absorption rates of other anti-convulsant medications, particularly the one that Malachi takes at night. We are going to try to wean that one a bit, watching him closely for any increase in seizures.

The weaning process is always tricky. And with his sickness hitting at the same time as our med change I am not sure what to blame.

Whenever we have appointment days in Chattanooga I try to find something fun for the kids to be excited about. We have an annual pass to the small zoo downtown and the weather was beautiful so I told Malachi we would stop by to see his jaguar friend.

Here is a photo with the new anteater.

Levi rode in his big boy stroller for the first time at the zoo and the perspective changed things a bit for him. He was terrified of every animals he saw, screaming when they came close to him. The shrieking made Malachi laugh, so between the animals and his wild brother he had a wonderful time!

This picture of them looking at the chimpanzee sums up the emotions well. Curious Malachi, angry Levi.

His jaguar friend was sleeping in the sunshine, and Malachi can only see the animals when they get close. He was visibly disappointed that he couldn’t see him so we set out to find an animal that he could see. His second favorite animal there is the snake, but only because they let him hold it one time. Third on the list is the black crow….random I know. But on our first ever visit to the zoo the crow asked Malachi “Where do you go to school?” I genuinely thought I was on a hidden camera show and asked a worker about it. She explained that the crow had picked up several sentences and words and could actually talk quite well.

Malachi likes to shout HI to the crow, and without exception the crow always talks back to him. They are good buddies. And of course, Levi was terrified out of his mind that the bird talked which is guess is totally relatable. Needless to say, our zoo excursion lasted about an hour.

I always thought I would be a frugal, hard nosed mom that didn’t give in to her child’s begging for overpriced souvenirs from the gift shop. But instead I have become the mom that spends $5 on a llama shaped ink pen, just because it makes Malachi smile to pick out something special. That llama pen brought him so much joy as I told him he and daddy could work on writing their letters later after dinner.

We had all sorts of fun things planned for the weekend, but when Malachi gets sick things come to a screeching halt. Now that he has his g-tube there is a little less pressure on us as we know dehydration won’t become an issue. But we still get anxious and watch him closely for anything that warrants a hospital stay. So far so good.

Sometimes this halt in life is a hidden blessing, as we get to throw all plans out the door and spend time together at home as a family.  Friday was a long night for sick Malachi and momma so on Saturday I needed a little mental break. I snuck out (of course when Levi wasn’t looking) and drove out to the Mennonite market to get some fresh bread and cinnamon rolls, picked up a pizza, and headed to a Redbox to rent a movie.

We also caught up on baths, laundry, bill paying, grant applications, and a little bit of cleaning! Check out this post bath hair; curls like his daddy:

Every now and then Malachi’s “Chick-Fil-A post” from 2017 flares back up again on Facebook. I don’t understand technology well enough to know why or how this happens, but I can always tell based on the amount of friend requests I suddenly get. Last week his post flared again getting another 33,000 likes in about three days, taking the total likes on the original post to 246,000. Each time this happens I always wonder what God is up to!

When I think back to the day I wrote that post I laugh to myself…God had been prodding me to write it and I ignored Him. He prodded and prodded and prodded. Usually when He lays something on my heart to write, it has a scripture within it. But this one didn’t mention God. It is literally one of the only big posts I have done on Facebook that doesn’t mention Him.

It was two days after the encounter in Chick-Fil-A that I sat down to write the note to “The mom of three…” (https://www.facebook.com/photo.php?fbid=10100707570909686&set=a.841223295276&type=3)

I choose to believe that nothing in this life is coincidence. There is a plan that God has for each and every one of us, and my plan involved being pregnant and craving chicken that specific day. I look at the number of other special needs moms that viral post connected me with and I see the work of an all-knowing God.

Early on in our journey with Malachi and his extensive medical needs, I remember feeling overwhelmingly alone. As the years went on I started to get glimpses of other warrior children fighting similar battles and my scope widened. I remember seeing a photo of another child with Malachi’s specific HIE diagnosis and being blown away with their physical similarities.

God has used that post to allow me to help encourage other moms all around the world in similar journeys. I have exchanged hundreds of messages with strangers concerning medical diagnoses, insurance, equipment, and Jesus! That support network is something I craved early on and couldn’t find, so to be able to encourage and uplift others is so special to me.

As God continues to unfold the plan He has for my little unique family I can’t help but smile, realizing that this life is the opposite of the one I had planned…but in so many ways it is more beautiful than anything I could have ever imagined. I see glimpses of the nature of God in Malachi. And I see the power of God’s in simply obeying the tiny things he asks us to do….like write a silly Facebook post to the Chick-Fil-A mom.

Isaiah 55:8-11 says

“For my thoughts are not your thoughts,
    neither are your ways my ways,”
declares the Lord.
⁹ “As the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.
¹⁰ As the rain and the snow
    come down from heaven,
and do not return to it
    without watering the earth
and making it bud and flourish,
    so that it yields seed for the sower and bread for the eater,
¹¹ so is my word that goes out from my mouth:
    It will not return to me empty,
but will accomplish what I desire
    and achieve the purpose for which I sent it.

WOW! Take a minute and read verse 11 again. If God is calling you to do something- even as insignificant as it may seem- choose to have faith that, with God as the catalyst, it is about to accomplish something big. Like the boy that brought his lunch that day that Jesus fed the 5,000…you never know what meager thing you will have to offer to the Lord that He plans to multiply.

He can take our imperfect scraps, like my Facebook post, and multiply them into beautiful, faith changing moments for others. All he needs is a willing heart, one that trusts that His ways are higher than our own.

My prayer is that God gives you and I opportunities to do the small things and an obedient heart. And that He continues to ripple effect those small things and make a wave that our minds can’t even fathom.

Much love,

Leah (and the now sleeping soundly Levi)