Stinky Pits

Do you ever find yourself in a situation and you have to sit back and think “Wait, why am I doing this again?”

I have those moments often, and this week’s moment came when I found myself loading up the boys and heading three hours away for a regional tournament soccer game with our girls team. Malachi had a tummy ache on the way there, which meant lots of pulling off the highway at shady gas stations and trying to burp him. We made it there just in time for kickoff, and by that time I was a stressed mess trying to make sure the needs of my kids were met while attending to coaching the game.

I failed miserably at both jobs, and an hour and a half later I was loading the boys back into the car to make the three hour ride home. The boys were tired of being in the car, and they were both wired by the time we made it home at midnight. As I sat awake with Levi at 3am, I mentally started asking myself the question of “Why are we doing this? Why are we continuing to coach soccer when it requires so much of a sacrifice?”

The next day I was a walking zombie, but that evening we were hosting an FCA Fields of Faith event at our church for the teens in our county. We asked my mom to come to the house and watch the kids for a bit so we could both go and focus on the event. We were so pleasantly surprised when we saw so many of our soccer girls walk through the doors, many of which do not know the Lord.

I don’t ever want this blog to be used as a breach of privacy for people in our circles, so I will summarize with saying that it was a wonderful evening with lots of people growing closer to the Lord, including some of our soccer girls.

God has been reminding me that Jake and I have been called to be seed planters. Sometimes you have to step into the world to find unique places to plant and water seeds for Christ, and for us that is the soccer field. Some years we don’t see the seeds grow, and watching the thorns choke them out can be so discouraging. But then there are years like this one where we see God moving in a group of teens and know that He is hard at work!

On a totally unrelated note, Jake and I do Christmas a bit different for our family and follow “one thing you want, one thing you need, one thing you wear, and one thing you read”. We try to be very thoughtful about the gifts we choose, and this year I have had my eye on a touch activated dinosaur for Malachi’s “want” gift. They are ginormous and will sit within reach right next to Malachi when he is in his adaptive seating. The toy was discontinued in 2009, but I was able to track down a reasonably priced one in Knoxville. We made a quick pit stop on the way to the soccer game and snagged this beauty.

Shhh, don’t mention it to Malachi! He knows we picked up a Christmas gift for him, and the suspense has been making him smile all week. For now the dino is tucked safely in the basement!

The boys are continuing to improve at horse therapy- Levi is enjoying it finally and not bursting into tears when we enter the barn.

As you know, Malachi’s brain damage is extensive and one diagnosis that can go hand in hand with it is precocious (early) puberty. Last week I caught a whiff of body odor and realized that Malachi has one stinky pit. Oddly enough, it is just the one but oh goodness it will knock you down. We have been trying to find a good solution but after showers and scrubbing the smell still holds strong. We picked up some natural deodorant for him and it seems to be working, however Levi has been fascinated watching this whole process unfold. So fascinated, in fact, that he found daddy’s Old Spice and proceeded to cover Malachi’s hands, arms, and cheeks with it. So helpful, right!

I have been having a hard time accepting the BO on my 7 year old son. It seems like such a weird thing to be sad over, but it has spiraled my thoughts toward the realization that, precocious puberty aside, Malachi is growing up. And while my love and acceptance for him will never change, I fear that societies tolerance will change for him when he is no longer a “cute little boy in a wheelchair”. I hope and pray that my fears are irrational and unfounded.

Levi loves Malachi so much, and has been making sure to include him in all of his antics and pretend play. I found Malachi all propped up with an old iphone earlier this week and seeing his inclusive heart for his brother makes me happy. Malachi, on the other hand, didn’t quite know what to think.

On Thursday Jake and I had some friends reach out and graciously offer to babysit the kids so we could go out. For my birthday in March I was gifted a Cheesecake Factory gift card, and covid hit shortly after. It seemed like a perfect night to cash it in and enjoy some time alone. Jake and I spent the evening talking about life, and the many surprises it has yielded.

With Levi’s birthday coming up in three weeks my mind has started to drift towards those early days with him, and the surprise mountain we faced. Sometimes simply verbalizing the struggles can be therapeutic, and this was no exception!

There are certain times each year that trigger bad memories for me, and this particular week each year is always a rough one.

This was the week in 2013 that I was holding Malachi and felt an unnatural jerk from his little 9 month old body. We had been home from the NICU for 5 months and we fully believed that God would completely heal him from his issues surrounding his prematurity.

I will never forget the deep feeling in my gut as the motion of his body felt so rhythmic. I loaded him up and took him to the children’s hospital where they confirmed he was having a rare seizure type called Infantile Spasms- this seizure type has a 75% rate for severe mental retardation. These seizures continue to damage the brain until they are under control and in order to do that we had to start him on an intense steroid, shooting it into his little body twice a day for several months.

We eventually got his seizures under control, but through the course of that leg of our journey our hopes for a normal life for Malachi were dashed a bit. We still believed God could heal him, just we started to understand that His timeline didn’t seem to be matching up with ours.

Fast forward to the next year and Malachi went in for a surgery to correct three minor issues. But while they were in his abdomen they found a very serious intestinal loop that required major surgery. After surgery we were sent to the ICU for a bit, and those memories never leave.

As luck would have it, this was the same week for another abdominal surgery for Malachi in 2018. I am really hoping that eventually we can have the “good” years overpower the “bad” ones for this particular week!

Sometimes I sincerely wish I had a poor memory. I wish I could forget the details, the dates, the facial expressions, the shoe colors of doctors when they delivered bad news. But my mind steel traps them in. I saw a photo of a child in the hospital this week with a particular tape on her IV, and I could immediately smell the tape scent in my mind. I know that sounds crazy, but the details plague me!

I am starting a new study with my youth group this week called “Fake or Follower”, and one of the key concepts is the cost of following Christ. This week I have been reflecting back on different parts of my life, trying to find the ways in which following Christ has “cost” me something.

And during this reflection process God has shown me that the biggest losses for me have been friendships/relationships. I can count time and time again when I followed a direction God has called me to, and as a result friends have been so frustrated or offended that they have chosen to cut ties with me. Some have done so in subtle, gradual ways while others have done so with a barrage of unkind words.

I have mourned so much over those lost friendships, but looking back I would not change the decision I made to pursue the path God called me to. My God is not a God of regrets, especially when it comes to obedience. But I have to be completely honest…each of those lost friendships have hurt me deeply.

The cost of following Christ instead of the world can be painful.

But God has been reaffirming in me that you can’t let the fear of man’s reaction keep you from pursuing the path God is calling you to.

Galatians tells us:

Am I now trying to win the approval of human beings, or of God? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.

This week I have let the creaks of loneliness enter my bones. But God has been reminding me that there is a season for everything, and I have to look for contentment in each season.

Please continue to pray a hedge of covid protection around our family. We seem to be narrowly escaping people that find out they are positive, and I am confident that is the Lord’s doing! May he continue to protect my sweet boys and keep this final week in October a healthy and surgery free one!

Much love,

Leah

Empty Cup

This week has been an interesting one. I feel like I say that every week, so maybe interesting is our normal?

Malachi’s appointment with the epileptologist went well and we are going to try to increase his CBD oil a bit more to see if we can decrease some of his seizure activity. We needed to do a blood draw to check his seizure med levels, and I was mortified to find 14 people crammed in a small 15x10ft waiting room. I signed us in and stayed in the hallway as far away from the crowd as possible.

But the longer I sat in the hallway the more I epiphanies I had.

Epiphany #1 was a humbling one: I have no control over my toddler. At home in our bubble he knows the parameters, but in the hospital hallway with an audience in the glass walled waiting room watching him he was a maniac. I teetered between sheer embarrassment and sheer horror as I watched him touch every surface in sight and lay on the what I can only assume to be corona infested floor. This epiphany likely naturally led to the next one…

Epiphany #2 what in the world was I doing?!? Here I was, locked down at the house daily with my boys to protect them, and now waiting in a line in a hospital center that has a general pediatrics walk in clinic inside of it…and only one blood lab. I started looking at the kids inside the glass walled room and saw a variety of sickly looking eyes staring back at me. One of the poor children had sweated through her pajamas, and her hair was drenched with sweat. Another baby was stripped down to a diaper, eyes red and sickly.

I started to ponder what the best parenting move was in this situation: check seizure med levels or leave and protect them from potential sickness.

When Malachi heard about the blood draw

Epiphany #3 was realizing that I am not confident in the children’s hospital to do what is truly in the best interest of my family. This is a thought I have entertained many times before, but it is in moments like these that I have to remember that even in the medical settings with professionals I must advocate for my children.

In the end we made the decision to wait in the hallway for nearly an hour, and I resorted to empty time out threats with my tyrant, corona hungry toddler touching every surface he could.

Malachi handled the blood draw like a professional, which he actually is with the hundreds he has had to have in his lifetime. When the blood drive lady remembers his name and his “24 weeker veins” you know you are a regular.

By the time we left the building my blood pressure was soaring and I was in a pretty angry mood. I also realized that my emotions had overtaken my parenting and I hadn’t been the nicest mom for the previous 3 hours so I decided to stop by the zoo on the way home so Malachi could see his jaguar friend.

The adventures continued this week thanks to sweet little Levi. On Wednesday we were racing around to get out the door and I ran into the bedroom to grab my shoes from the closet. I heard the bedroom door shut and a sinister laugh came from Levi as he ran in saying “door door door”.

Earlier this week around midnight he locked me in the bathroom by implementing the child proof door lock. Jake was already asleep and I didn’t have my phone so I started banging on the door as loudly as possible and screamed. After about 5 minutes of this Levi was crying so hard in the living room (where he and Malachi were hanging out solo) that it woke Jake up. We gave him a long lecture with my hoarse voice on not doing that to the doors and assumed that he would be too traumatized to do it again.

But we assumed wrong. When I saw Levi’s sneaky smile I knew he had done it again and this time he locked himself in with me, leaving Malachi alone in the living room. Jake was at work, but thankfully this time I had my cell phone with me. I called the neighbors but no one was home, so after weighing the options I decided the only viable one was jumping out of the window.

Jake has had to jump out this window before, and it ended up with him rolling down the hill and getting covered in mud. I knew that I didn’t want to do that method, so I surveyed the drop and decided to try a cliff hanger mode.

I locked Levi in the bathroom so he wouldn’t attempt to follow me. Then out the window I went, trying to hang gracefully then drop to the ground. It was anything BUT graceful as I realized I am much heavier and much weaker than I used to be. My muscles were angry with me for asking so much of them (and still are), but I landed on my feet. I went in through the front door and yanked those darn baby locks off the doors on the way to rescue Levi from the bathroom.

The weather was pleasant enough for us to enjoy the pool a few more times!

I have bounced around three thoughts for tonight’s devotional thought, but I keep settling on 2 Timothy 4:3-4.

For the time will come when they will not endure sound doctrine; but wanting to have their ears tickled, they will accumulate for themselves teachers in accordance to their own desires, and will turn away their ears from the truth and will turn aside to myths.

I have many well meaning friends in my life that often remind me about the importance of self-care. They will commonly say things like, “You can’t pour into others from an empty cup” as they encourage me to take time to go do things I enjoy, or pamper myself. Admittedly I have a difficult time putting my wants above my boys and I am grateful I have great friends that desire to see me happy.

The mental picture this phrase provides is a logical one, and one that in theory makes a lot of sense.

I do believe that it is biblical to take care of yourself physically, mentally, and spiritually. No arguments here with that. But I will argue with you on whose job it is to fill the cup.

Here is the truth: it is not our job to fill the cup. I believe with all of my heart that God will fill my cup with the exact amount that is needed to fulfill the tasks He has given me to do. When we start to think that we control the amount in that cup with pedicures or girls nights out, we start to take away the dependence God wants us to have on Him.

That mindset can actually do more damage than good, as we start to mentally ration what things or people we could be wasting our cup on, as we believe we will be the ones that have to do the refilling.

In Philippians 2 we read

Have this attitude in yourselves which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross. 

Did you catch those words?

Christ emptied Himself.

Christ humbled Himself.

Christ became obedient to the point of death.

God will call each of us to do things that will require every last drop of our cup. He will ask us to do things that we have to use our “reserve” on…that bottom layer of the cup we have been saving and pretending is linked to our sanity.

When we walk in obedience and we empty ourselves in humility for others that God directs us to, God will see and honor our sacrifice and gladly refill us for the next task He has for us. I have seen this in our lives time and time again, as raising medically complex kids is a quick cup drainer. But I am so confident that this path God has me on has been hand picked by God…including all the bumps in the road that splash that water right over the edge of my cup.

God will refill our cup so much more full than any measure of “me time”. Part of being a child of God is fully believing that will do just that.

But I also want to make sure that I am being transparent here and share with you that the seasons of the empty cup can be so very difficult. Those times that you have emptied yourself and have nothing left to give can be lonely times- but those are the times that we are reminded to look heavenward, not inward. Dry cup seasons are sometimes there for a purpose, as God is simply telling you to stay still and rest.

Don’t let the fear and discomfort of dry seasons keep you from pouring yourself out for others when God clearly calls you to do so. Like the widow’s oil jar, He will never allow us to deplete without fully intending to replenish.

God bless,

Leah

I Am Your God

This week we crammed in as much fall break fun as we possibly could and managed to squeeze in some naps and chores in between. It was the reset that I personally needed to get mentally back on track for taking care of these boys full time. Sometimes I just need the relief pitcher for an inning or two!

On Monday the boys went to horse therapy, and it is always so interesting to me how much better they do when Jake is there to watch. Malachi puffs his chest out and rides like a professional. And Levi cried like he always does when he starts the session but dried it up within thirty seconds when he heard his daddy clapping for him.

On Monday night Jake and I had a very special surprise date night thanks to our great friends. We went inside a legit restaurant for the first time since early March and sat down for a nice kid-free meal. It felt so refreshing to simply get out of the car and walk immediately into the place without unloading wheelchairs and kids. Such a blessing.

On Tuesday morning I went solo to a car appointment and got to read a book for almost an hour and a half without interruption. It felt so normal and pre-children to be able to escape in my mind and focus on someone else’s words and life. I am a memoir gal, and have been working my way through all of the books of Corrie Ten Boom; this particular one she wrote about her father and all of the many spiritual lessons he instilled in his children. It was so challenging to me and caused me to evaluate how well I am instilling hard gospel concepts in each of my boys.

We spent some time at a local park down the road from our house, letting little Levi ride his bike. Malachi got to ride on the swing with dad, and this wasn’t an “ordinary” one like the one at our house…this one squeaked and groaned with each swing much to Malachi’s delight.

We still ran some soccer open fields this week for our girl’s team as we prepare for the district tournament. Jake ran the practices and I brought the boys out for a change of scenery.

Our haircutting friend came by the house that evening and gave each of the boys a much needed haircut. Levi was uncooperative but thankfully his hair is messy enough no one would know!

On Wednesday Jake and I planned a great day of fun for the boys, making the 1.5 hour drive to a large zoo in Knoxville. We made it about an hour from home and I turned wide eyed to Jake as I realized that neither of us had put Malachi’s food in the car that morning. Oops! Thankfully I keep some spare medical supplies in the van for worst case scenarios. We were able to dig out a syringe and an extension and hijacked some food from Levi’s feeding backpack to tide him over until we got home that afternoon.

We stopped for a nice sidewalk lunch on the way and took our sweet old time enjoying the beautiful day. When we got to the ticket counter at the zoo at 1:30 they informed us that the zoo closed at 2:00 that day. Oh goodness. But at that point we were committed as we had talked the day up to the boys and made the drive. So we bought tickets and booked it to the back corner of the zoo so we could take our time walking back to the exit.

Poor little Malachi was genuinely excited about the zoo, as this one had lions, tigers, and rhinos. But due to COVID precautions they had roped off several feet leading up to the glass. I couldn’t push his chair close enough to see any of the animals and seeing him try so hard to see them with his low, struggling vision broke my heart a little bit. He can’t really see them normally, but he can see movement if they come close to the glass by him. He was clearly disappointed so we did our best to describe them.

Then came the redeeming trip on the zoo train. That was the three minutes we needed to make the trip feel worth it!

And of course we let the boys pick out a toy from the gift shop. I am always so amused with how picky Malachi is when it comes to picking out a toy. He uses his signs faster than ever before and said “no” to at least a dozen stuffed animals before we found a jaguar puppet that he could put on his hand. He grinned and signed YES YES YES and we knew we had “the one”.

We headed back home and later that evening I took the kids to a friends house down the road. Malachi got to hold a rabbit and a kitty named Simba, which made him beam with joy and giggles.

Levi’s definitely in the toddler phase and emotional mood swings are frequent and severe. He has been crossing his arms when he gets angry with us, and I have to try really hard not to smile as it just looks so darn cute.

On Friday the boys and I made a trip to visit with my brother and his family in Atlanta. We get to talk on the phone with them often, but being able to run around with the cousins in person was a real treat.

I was also able to catch up this week on the special needs mom to-do list…the list that I let stack up because I just simply don’t want to deal with the phone calls. But with Jake home and no excuse not to, I tackled the list one item at a time.

-I filed a third medical appeal with insurance to cover Levi’s recent Cincinnati surgery.

-I worked with the old diaper company with no luck, so I transitioned us over to a new diaper company that will provide the brand/size we like. Call me a diaper snob I guess…but Malachi complained a lot about the other ones so I just don’t feel right making him wear them.

-I filed grant paperwork to get some financial aid to cover items insurance won’t cover.

-I picked out curriculum for Malachi’s homeschool program and started the pre-approval process for the purchases I would like to make with his state educational funding. Through the Individualized Education Account I have $7,300 to spend on his educational needs this year. That is mind blowing!

-We are also started actively looking for a tutor to come work with Malachi a few times each week so he can feel like he has a “teacher” and some time focused solely on him and for him.

With each tackled task I felt that water level that was resting near my chin drop a bit lower. I felt like I could take a deep breath and enjoy simply being present with the boys without the distraction of the to-do list.

Tomorrow we trend back towards our normal with Jake back at work. We kick tomorrow off strong with a routine trip to the hospital to see Malachi’s epileptologist. Malachi’s seizures are still a daily thing, but have morphed with the help of his CBD to short ones.

This week, however, they started amping up in frequency and intensity- interestingly timed with when we ran out of probiotics. Those fews days were very difficult with Malachi having some major seizures in the middle of the night. I sleep right next to him so I will wake up when he goes into one- he turns so hard that he starts smothering himself in his own pillow. I wake up to him trying to breath through the pillow and choking during the process. We try to race out of the room before he starts coughing or vomiting so he won’t wake up little Levi.

Malachi has intractable epilepsy, so it is always changing. We are currently at 4 different types right now, each with a different trigger. It is predicted that he will develop more seizure types as he grows and there is nothing we can do medically to eliminate the seizure activity. If I had to make a list of the worst things about being a medical mama I am pretty confident epilepsy would rank up in the top three.

Epilepsy is ever evolving, it is triggered by the most random things, and it takes my son away from me for a short period of time. Watching him try to recover after the seizure is over is heartbreaking, as you can see firsthand how draining those few moments can be on his little 7 year old body.

But the reason it ranks near the top of the list is because of the helplessness I feel in those seizure moments. A few years ago I remember telling someone that the only thing I can do is enter the seizure with him and try to give him some stability to focus on. I often try to stay as still and calm as I can so he doesn’t feel my fear. But I also have to be hypervigilant, counting his breaths to make sure they are consistent and keeping him from injuring himself.

But epilepsy has taught me what it truly means to place something in the hands of God.

Isaiah 41:10 ‘Do not fear, for I am with you;
Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you,
Surely I will uphold you with My righteous right hand.’

During those seizures I have to be Malachi’s anchor in the storm. I have to make sure he gets through that moment safely and feels secure during those fearful times.

And so often I feel so alone in this job. The epilepsy mom is a unique role- one that you don’t truly understand until it intertwines into your every day.

But as I read this verse above it reminded me that in the same way Malachi looks to me to be his anchor in the storm, God is that same anchor for me in this leg of my storm.

The words “Do not anxiously look about you” ring so true in my ears.

I know I often talk about things that are unique to special needs parenting, but the blessing of our story is that the struggles are universal enough to be applied to so many other situations and lives.

What in your life is causing you to look anxiously around you? What things in your life create a paralyzing fear, as you recognize there is nothing you can do to eliminate that beast that you are staring into.

But even more powerful that the command to not look anxiously around are the simple words that follow it: “I am your God.” So perfectly simple. In the same way I reassure my son in his seizures that I’ve got him safely in my arms, God gives us that same comfort in our struggles.

I don’t know what your “epilepsy” may be. But my hope is that this week we can recognize the calm arms of God wrapped around us in those moments of helplessness. As often as we try to convince ourselves that our struggles and trials are unique, they all have the amazing potential to send us closer into the embrace of God.

Please pray healthy over our family as we continue to try to live and thrive in a COVID world. Pray that the refreshing that I was able to experience last week will carry me for a long time.

Much love,

Leah

Enough, Lord

Jake is officially on fall break this week, and it couldn’t have hit at a better time. We are looking forward to a week of catching up on chores, swimming in the pool, going on some small family outings, and taking turns napping. Bring on the sleep!

There is a constant pressure that builds on the special needs mom. It isn’t anything specifically unusual or extraordinary that contributes to it, but I have found it to be a combination of the routine medical needs plus the surprises. I can’t handle the surprises. They mentally break me.

Special needs mothers have to accept that there are so many things beyond our control. One morning this week I medicated and fed both boys, then at the exact same time they both started throwing it all up (Malachi one large and Levi 5 smalls as he walked from the kitchen to the living room). I looked back and forth at each child retching, trying to keep each from choking on their vomit and also trying to survey the damage to know what to get to clean it up…carpet cleaner, tile cleaner, bath towel, garden hose haha?

My morning started calm with everyone ready to walk out the door and escalated to baths, outfit changes, and deep cleaning. Then there was still the question of whether or not to re-medicate both boys.

It is in these moment of chaos that I feel the pressure build a little bit more.

We made plans to meet some friends at the zoo this week, but the night before Malachi ended up having several seizures. He and I stayed up until 3am and woke up just a few short hours later with another big seizure. I knew he was so excited to go to the zoo, but clearly his little body was exhausted.

You can’t plan for the surprises…and I don’t know that it is healthy to live a life anticipating them. But at this point the surprises come so regularly I am not sure they actually qualify as surprises anymore!

We ended up going to the zoo, and while Malachi was very limp he did have a wonderful time. He even got to feed the giraffes and ride the choo choo train which ended up being his favorite. I so badly want to create these memories for my boys, and it makes me feel a bit like a typical mom.

And Levi was a wild man! I haven’t seen him that wild ever, and he had such a wonderful time.

We came home that afternoon and tried to recuperate from the fun day. Both boys slept on the way home and woke up a little more perky. My mom came over to play with the kids while I ran down the road to watch the soccer team play and when I went out to the van it wouldn’t start.

For some reason, this surprise hit me harder than the medical ones. I had a “life is not fair” moment- as if life should recognize that my plate is full and not add things to it. Oddly enough I had just taken the van to the shop this week for a different reason. Life had tossed two van repairs onto my teetering plate in two days.

I tried to call Jake, but he was coaching the girls and didn’t answer. So then I threw myself another pity party with the theme of feeling alone. There are times I so desperately need someone else in my life to take over some of my burdens, and Jake can’t always do that with his work schedule.

I can fully admit when my burden is too heavy to bear, but sometimes when I look around I can’t find anyone to help carry part of the load. It is a weird and lonely place to be in. Most of the time those burdens are too unique to be able to pass off to someone else, but typical things like car problems are in a different burden category.

So I had a good cry over that and then popped the hood to pretend to know how to fix the car haha. Thankfully later that evening one of our wonderfully supportive friends came over and helped solve that problem. And the other repair will get fixed this week while Jake is on break.

Changing gears- we got new neighbors this week and they have some friendly dogs that stopped by for a visit. Malachi has always loved dogs, and loved our two so much before they each passed away. One day we would love to get another dog, but you can refer to the “surprises” comments above to imagine how that would go right now.

Oh how I love seeing pure joy on Malachi’s face. And his toothless grins. He is cutting a few teeth right now, which could be the culprit for the uptick in his seizures.

Levi has been eating and eating and eating this week! I think he must be going through a growth spurt. We met in person with the boy’s feeding therapist this week next to the parking lot of the clinic. We have been doing tele-med with him since March and I felt like it would be good for him to lay eyes on Levi while he ate. I am still not comfortable resuming therapies yet in the clinic setting and can’t imagine us doing that for quite some time.

Levi helping mommy do the dishes

I know sometimes I reuse verses and thoughts on the blog, but there are things God has shown me in the past that He brings to my attention time and time again. This week as I have encountered an overwhelming amount of surprises I keep thinking of a specific verse from the Bible: “Get up and eat, for the journey is too much for you.”

Out of context those words might not mean much to you, but when you hear the story surrounding it, it really takes form in my life and might in yours also.

Take a moment and read this excerpt from 1 Kings 19:

Elijah was afraid and ran for his life. When he came to Beersheba in Judah, he left his servant there, while he himself went a day’s journey into the wilderness. He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, Lord,” he said. “Take my life; I am no better than my ancestors.” Then he lay down under the bush and fell asleep.

All at once an angel touched him and said, “Get up and eat.” He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.

The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.” So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God. There he went into a cave and spent the night.

When I read this story there are so many things that pop out at me. While I have never been ready to die, I can relate so much with Elijah’s comment “I’ve had enough, Lord.” Have you ever spoken those words to God? I know that I have spoken them many, many times. I have said them in the same tone as Elijah too, in a total moment of defeat and surrender.

God sees our innermost being, and He knows before we even speak it that we have been pushed beyond what we think we can bear. But sometimes it is in those weak moments that we can hear God the clearest. When we are able to handle all of the “things”, we don’t have to turn our eyes to Him in desperation. But it is in those moments where things extend beyond our control that we have no other option but to call on Him.

In this story, God sent His angel to restore strength to Elijah. He met his needs in a supernatural way, providing a warm fire, fresh baked bread, and a jar of water. This part is interesting to me as well, because a few chapters back we read about God providing food for Elijah dropped by ravens and water from a nearby brook. This time it was provided in such an intentional way, almost as if God knew Elijah needed the act of kindness more than the sustenance. Oh boy, how often I have been in that same state of mind.

The second time the angel wakes him up is so powerful to me as well, as if God wanted to make sure Elijah knew that even the tiniest needs, like his hunger, were acknowledged and important to Him.

But the angel’s words just keep playing in my mind: “The journey is too much for you.”

This week I have felt like the journey is too much for me. I feel underqualified, overwhelmed, and emotionally fragile. I feel inadequate, and in many ways I am.

The journey is too much for me.

But like Elijah, I have to find comfort in knowing that God sees that this journey is far too much for me. He sees that I need sleep, he sees that I need someone else drawing water for me in a jar and baking warm bread for me over a fire I didn’t have to create. He hears me say “I’ve had enough, Lord.”

And He isn’t angry at my proclamation, but instead I can see him with a loving smile on His face, touched that I have diverted my eyes towards Him. I am sure He has already dispersed some angels my way, like our car buddy on Thursday night.

And I have confidence that He will give me the strength this week to continue the journey.

I don’t know if anyone else needed that reminder…I know I sure did!

God bless,

Leah

Raised in Christ

In just under two months Levi will turn 3! He is like a sponge these days, soaking in all of the things around him and exploring anything he can get his hands on.

Levi is going through a baby stage and is absolutely fascinated by babies on tv. He will also pretend to be a baby every now and then and when he does that he lets me hold him and rock him for a few seconds.

This week as I rocked him and held him close to me I felt a lump of emotions well up in my throat. Like I have said so many times, special needs grief is so unique and can be sparked by the tiniest moments.

This wave hit me as I flashed back to baby Levi. After Malachi’s rough beginnings my mommy heart was so excited to hold my baby right after birth. But when I woke up from surgery Levi was nowhere to be found. Within the hour he was headed by ambulance to another hospital and I found my arms empty.

After a few days I was finally discharged and got to snatch up my wire covered and oxygen tubed 4 pound baby boy and I cherished those moments. Very quickly those moments of peace were replaced with bad news, surgeries, air ambulances, and LOTS of intubations. When he was on the ventilator I wasn’t able to hold him often- and he was on and off of the vent for the first 5 months of his life. All I could cling to was one day hoping to snuggle my baby at home like a typical mom.

When we finally got the discharge papers we raced back to Tennessee and it was my mommy moment to shine! But as I held his little body close to mine he immediately erupted into tears. It reminded him of the many times he was swaddled to prevent him from pulling his ventilator out. It also reminded him of the many times he was held down for blood draws, IVs, intubations, and so many other procedures.

My sweet baby had associated being held by human hands to inflicting pain, and rebuilding that trust took a long, long time. He never truly got to a place where he was comfortable simply being held, and each time he rejected my attempts to do so felt like a dagger popping yet another expectation balloon.

So now when he crawls into my lap as a two year old pretending to be a baby I am flooded with such emotions…pure joy that I can snuggle my baby, disappointment that I missed this in his early years, pride that he and I have been able to rebuilt the trust the NICU took from our relationship, and plain ol’ overwhelming love for him.

This week we had an appointment day with the Gastroenterologist for both boys. I love when I can pair up a specialist, and right now they share about 7 of them. Levi’s medical PTSD kicked in and when I asked him what he was scared of he showed me his nose (the COVID test from surgery last month). His memory is apparently really good. He screamed and cried for the appointment, then when we went to leave was so happy to be going he told each staff member “love you” as he walked by them toward the exit.

The good news is that both boys are gaining weight really well right now. Before Levi’s birth, Malachi was 40 pounds. Living in the Ronald McDonald House and me not being able to focus on everyone’s needs took a toll on Malachi and he dropped down to 25 pounds. When we returned to Tennessee we went ahead and got Malachi’s g-tube and have been working hard to get back to a healthy weight for him. This week he weighed in at 35 pounds!

Levi is also gaining well right now and is just shy of 29 pounds. The doctor was happy enough with their progress to put us on a 6 month rotation!

We high tailed it out of the office and headed for an adventure! The boys have not really done anything in public since March, so I thought it was time to try an adventure. I had told them both we were headed to the zoo and Malachi’s eyes immediately lit up.

We made the hour drive there and when I pulled in the parking lot was a little more crowded than I imagined it would be. I got cold feet and considered leaving, but when I looked at Malachi I knew he was eagerly listening for cues we had arrived. I pulled into a parking spot and announced “We’re here” and he erupted into a fit of giggles.

I got them out of their seats and headed toward the entrance and Malachi continued giggling uncontrollably. His laughter was contagious and pretty soon all three of us were laughing and squealing with joy. I haven’t seen Malachi that excited EVER. It genuinely caught me off guard to see him so excited about a day at the zoo.

He can’t really see most of the animals, so I describe each one to him. He spent at least the first 20 minutes giggling non-stop. We went straight to his favorite, the jaguar, who so kindly came over to the glass for the boys. Then we went to see the monkeys- I took a video for you so you can see how much joy was exploding out of him:

Levi didn’t shed a single tear this time, even going nose to nose with the jaguar. He was so excited to be out of the house, and was way more fascinated with the other zoo guests over the animals.

The boys each got to pet the goats, but I wasn’t able to get photos of Malachi as holding him takes both hands! Malachi loved feeling the sharpness of their horns.

I was so pleasantly surprised by our ability to avoid all of the other people. We never shared an exhibit with another person and even the trails were empty. We have a season pass that expires in November so we are going to try to make several more trips while we can- maybe even another one this week.

Other random, yet noteworthy moments from our week…

Levi rode his horse by himself at therapy!

Malachi’s new Chill Out chair came in from Canada! We are still finding the sweet spot with it, but overall I am thrilled! His posture is so much better in it than his other comfy option.

The chair has a rocking ability, and it didn’t take long for Levi to discover it. We have to be very close when Malachi is in it- and this video explains why:

And as always, we had moments of pure chaos. This week most of those have revolved around urine. Lots and lots of urine. We are thrilled that Malachi is putting on healthy weight, but his diapers are no longer a good fit. Typically I would get a stack of samples from the medical supply company, as he is now entering adult sizes but with COVID they are no longer sending samples. I purchased several options from Amazon, but the cost is outrageous. I will be working with insurance this week to find an affordable alternative, but until then we are dealing with lots of leaks.

Malachi’s most epic one was when we were away from the house at an all day soccer tournament. We thought the boys would enjoy the fresh air and it was an overcast day, so they sat on the sidelines with us (away from everyone else of course). After lunch I plopped Malachi on my knee for a quick diaper swap out and he unleashed a half a days worth before I could complete the mission. It rolled up my leg, filling my shorts and covering my shirt. The stream went strong for what felt like a minute and by the end even my socks were squishing. I was mortified, as I had packed extra outfits for everyone but me. A friend mentioned that we were less than a minute away from a sporting goods store so I handed the boys to Jake and jumped in the car to find some replacement clothes for the rest of the day.

Malachi laughed at his little tirade and especially at my reaction after. Since then he has been plotting to do it again, laughing each time I get ready to change him again. Stinker.

Overall it was a wonderful week, filled with lots of little adventures that kept us all sidetracked from reality. We even had a nighttime swim in the therapy pool. In the gaps of the days we had lots of medical phone calls, pharmacy pick ups, grocery pick ups, and therapies.

One evening this week I snuck outside to read the Bible and do a devotional. I heard the door creak open and saw curly haired Levi peek around the corner at me then run back in the house. A few minutes later he came around the corner with Jake’s Bible tucked under his arm and casually sat next to me to read his Bible too.

He pretended to read the words, speaking gibberish with such confidence.

In 1 Corinthians 11:1 Paul writes:

“Imitate me, just as I also imitate Christ.”

I have been so challenged this week to examine the example I am setting for others, including my own children. There are days I feel like I am nailing it, and other days I let my worldly nature win out. I saw this photo this week and couldn’t stop laughing.

The truth is that no matter how hard we try, we will never be a “good enough” imitator of Christ. It is impossible to imitate perfection. But we can’t ignore that so many eyes are watching us- watching our reaction, our habits, our motivations, our conversations- to see if our love for Christ goes beyond the church doors on Sunday morning.

We may not always get to see the ripple effect our “different” walk has on the world, but there are small glimpses that remind me the importance of actions over words.

I read an article this week that I really wanted to share with the parents in my youth group, but a friend said it might not be received very well. So instead I will share it with you. It has given me some big food for thought and I hope it does the same for you.

I am not quite sure what proper etiquette is for sharing Facebook articles on this platform, so I want to note that this article came from “Jeremiah Johnson Ministries” Facebook page and was written by Jeremiah Johnson.

Jeremiah Johnson Ministries

I RAISED MY KIDS IN CHURCH, BUT…..“As a church leader and traveling prophetic minister, one of the most heartbreaking conversations to have with so many distraught Christian parents across America right now is the familiar one where they can’t figure out why their kids aren’t serving God after they raised them in church for 18 years. I have wept down in altars and felt the burden of God concerning this issue with hundreds and hundreds of parents along my journey.

One night after preaching at a church service and crying out with a particular set of parents, I got down on my knees in my hotel room later that night and asked God for revelation concerning this crisis in the Church. I went to bed and God woke me up at 3:33 am and said, “Satan is not afraid of anyone who lives IN CHURCH, but he is terrified of those who have learned how to live IN CHRIST!” The voice of God specifically distinguished between “in church” and “in Christ”.

As I sat in that hotel room after hearing the voice of God, great sadness swept over my soul. I realized in that moment what a great deception had swept over the body of Christ. Parents have fallen into the trap of dropping their kids off at youth group and kids church hoping the teacher would invest in their students at the expense of them having to actually disciple their own children in Christ while they were at home.

Like a twisted Hannah syndrome, parents are dedicating their kids to the Lord with the expectation that someone in the church (Eli) will do the discipling for them when this mindset is full of deception.

I’m all for church attendance, but I’m convinced the vehicle God created (the church) for people to actually encounter Jesus Christ and be discipled in Him has become a social club that entertains and caters to the flesh. Videos games and pizza have replaced radical encounters with the Holy Spirit and fire.

All of us Christian parents have to ask ourselves, “Are we/did we raise our kids ‘ in church’ and just expect them to magically serve God the rest of their lives because they heard good teaching in Sunday school/youth group OR are we actually teaching them how to live “in Christ” through discipleship and living by example in our own homes?”

The awakening and revival that so many are longing for is actually going to begin with healthy marriages and sacrificial parenting.-Jeremiah Johnson

As my little Levi continues to grow, I pray that God continues to press on Jake and I’s heart the importance of raising him in Christ. We don’t get a second chance at raising our children, so prioritizing a firm foundation in the Lord has to be intentional.

And seeing his love develop for the Word of God is just so precious to witness.

Please continue to pray for the health of our crew. With cold and flu season creeping in we will have to continue a pretty tight lock down. Getting out and about a bit this week reminded me of how detrimental these past few months have been to the boys, especially Malachi. He thrives on human interaction and being locked in the house all day doesn’t really provide what he needs.

Much love,

Leah

Oh Boy

This boy.

Levi has been surprising me this week in so many ways. He always wants to help with whatever care Malachi needs, which is something I encourage greatly. If he sees me check Malachi’s diaper to see if it needs to be changed he will scurry off and grab a fresh one and some wipes for me.

One morning this week I was prepping the formula bags and bottles for the day and Levi was watching me intently, looking for ways to help. I just casually said “Will you go get me one of Malachi’s extensions and a syringe for the top?” I said it jokingly, but off he went. I watched him get the stool from the bathroom, open the correct supply bin for an new extension and open the bag all by himself. He then went to the syringe drawer and opened a new bagged syringe, removed the stopper, and hooked it into the extension successfully for Malachi. He held it up with a proud smile on his face and I looked back with shock and admiration. What a precious little two year old helper.

Look at him go! Here is a video of his soccer dribbling.

Now for every sweet moment there is a rascal one of course. The biggest one from this week was when he removed his shorts, onesie, and diaper before I could catch him. In the diaper removal process some excrement fell out, unbeknownst to me. I chased him for a good bit, then finally caught him and took him to the bedroom to change. When we came out I was horrified to see that my shoe had tracked his poop all over the chase route. Oh boy.

Someone has been sneaking Oreos from the kitchen.

I have been working with Levi on color identification and took a short video to share with you all:

Malachi has been struggling with some seizures this weekend, and we are not quite sure what the trigger is. It could be the weather changing or something else. Regardless of how many seizures he has, he still continues to smile that famous Malachi grin that melts my heart into a puddle.

Malachi is changing into a big boy. I think he has mentally suffered the worst through this COVID phase at home. He craves engagement with others, and has really missed being social. We spend a lot of time outside listening to the nature noises, but he misses people. This week some of our dear friends came to sit with the boys so I could attend a soccer game. Leading up to them coming Malachi was wild eyed with excitement. It made his week!

It was during the wee hours of Friday morning that I woke up to Levi shouting my name from his bed. He does this every night, several times a night in fact but during the hours of 4a-6a Malachi wakes very easily. I jumped out of bed to run over to him and climb into his bed, something that successfully quiets him down. But as I sprinted across the dark room like a ninja he laid down again and drifted off quickly to sleep.

So there I was, standing in the middle of the bedroom looking at both of my sons sleeping peacefully. Malachi looked so small in the big queen sized bed and I knew there was plenty of room for me to sneak back up there with him, but doing so meant risking him waking up. Levi looked so big in his twin bed and I spotted a sliver of mattress I could lay sideways on, but that seemed like a risky move too.

As I weighed my options my eyes grew tired and I decided the safest and fastest route back to sleep would be sleeping on the floor. I couldn’t grab my pillow without waking Malachi, as I use my pillow to support his and keep him from smothering himself. So I did what any sleep deprived mother would do and grabbed a stuffed teddy bear out of Levi’s bed and the bath towel I keep at the foot of the bed to catch surprise nighttime vomits (don’t worry, it was clean).

As I curled up on the floor I couldn’t help but laugh, thinking to myself “This is definitely not the life I imagined I would have.” My husband sleeping soundly in our king sized bed alone, my medically complex kids hooked to machines, and me sleeping on the floor with a vomit towel for a blanket.

Life can be full of surprises.

There are weeks the surprises of this life make me giggle. There are times when they make me roll my eyes. But lately there are times that they make me angry. I have been so frustrated this week by the things beyond my control. I crave easier motherhood, but that is a desire that will never be satiated. In my head I need to accept this, but my heart just doesn’t want to.

Last night I had a anger burst. Long story short, the kids and I were up until 4:45am. It was a series of unfortunate events full of seizures from one and toddler mania from the other. By the end of it we were all three crying and I was just plain mad.

I scrolled through Facebook to try to distract my brain from the reality of what was happening and saw post after post of typical mothers with typical problems. The more I scrolled the more my frustration grew. I remember seeing this photo a few years ago and the phrase has stuck with me since.

I am not disillusioned, I am fully aware that my anger stems from my grief. Grief typically grows from a difficult day, hour, moment. But living life with medically complex kids means living in potential grief every hour of every day. It is not sparked by a memory that simply creeps in every now and then; it is sparked by a very difficult every day life and the reality that it isn’t a rough stage we will likely ever grow out of.

But let’s be honest here…anger is in no shape or form something that reflects God. There is nothing about our anger that glorifies Him, points others towards Him, or makes Him smile.

James 1:19-20 “My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires.”

I can sit here and try to justify my frustration to you all, but I know that each angry outburst is a moment when I have invited darkness to overwhelm my heart.

So how do I slow down this grief? How do I get rid of my anger? I am working on figuring that out. But for now, I can stop comparing my life to this hypothetical book of what parenting looks like that my mind has created.

When God wrote my story, He knew there would be nights on the floor with a vomit towel for a blanket. And He knew there would be a whole chapter devoted to sanitizing poop smeared floors.

Each of us have been written a unique story. So I am going to try to focus hard this week on the blank pages He is slowly illustrating for me. And I will be working on not getting disappointed when the image on the page doesn’t match what I thought would be there.

Romans 5:3-5 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Much love,

Leah

Mountain Goats

To be truthful, Jake and I are wiped out. School has been kicking his tail with all the additional things he is having to do for the remote learners in his classes as it is hard to teach math remotely. He is discouraged, frustrated, and continually falling behind so I am trying hard to offer loads of grace and understanding. And lots of home cooked meals!

But in reality, I am wiped out as well. I shouldn’t be…my workload is lighter than it has ever been, and our appointment calendar is thin. But the monotony of our schedule paired with being a medical mama is wearing me down. The boys aren’t sleeping well so I jump back and forth from bed to bed most of the night, trying to keep everyone quiet, calm, and safely hooked up to their machines. On a typical night (Malachi’s “nights” are 6 hours long) I am up and down at least a dozen times.

There were so many times this week that I packed up the boys and went for a drive, just hoping to keep toddler Levi strapped into a seat and still for ten minutes. I love him with all of my heart, but now officially understand the phrase “toddler tornado”!

I have been working hard to plump up Levi for his upcoming GI appointment. We are lectured continually about his weight but at the rate he moves he burns a whole lot of calories. I am finally seeing a change and he has gained two pounds in three weeks. I have been trying to run his feeds longer at night to add in some extra calories and try to keep him on his feed every 2.5 hours here at the house. He was fighting me about putting on his feeding backpack so we ordered two more and now he gets to pick which one he uses for the day. The new Toy Story one seems to be his top pick. We have a connection with a lady that modifies preschool backpacks for us so he can get some cool prints instead of medical looking ones.

Malachi is gaining weight with ease! He is up to 37 pounds and looks very healthy. He isn’t moving as much as he did pre-quarantine and I have been growing more and more concerned about his tone. I called his physical therapist and talked to her about some options for getting him seen at least a few times a month. She told me she drives out our way twice a month and would be willing to come by the house to do a session with Malachi! She came out Friday and confirmed that yes, Malachi has lost a lot of muscle tone since she saw him last.

On the flip side she was pleasantly surprised with how well Levi is doing!

I have been working this week on trying to get him another seating option that will encourage Malachi to engage his muscles and hold his head up. Seating for special needs kids runs between $3,000-$8,000 and insurance doesn’t cover comfy/non-essential seating. I have had my eye on a specific chair for him for a few years and I reached out to the company this week to see if they had any floor models in Malachi’s size that they would sell me at a discounted rate. To my surprise he wrote me back this week to let me know they had one they could ship out next week for $750 (includes shipping and taxes)! This same chair is over $3,000 new so I am thrilled.

We were approved for a local grant this year, the same grant that helped cover the pool last year. That extra allowance is helpful for purchases like these, and I will be working with them to see if they will help with the cost of the new chair.

I also spent a few hours on the phone this week filing our final appeal for Levi’s Cincinnati surgery. They have 90 days to respond, so say some prayers with us that they will reverse their decision and cover it.

This week I stretched past my comfort zone and took the boys to two soccer games. I kept them away from the stands and people, and it was the break we all needed. Malachi giggled and squealed with joy, so happy to be doing something normal. Levi cried 90% of the time yelling that he wanted to go home haha. He didn’t like the crowd and all the noise around him. Thankfully his buddy Tanner was there to act as his safety blanket.

We did a whole lot of outside playing and swimming this week. Both boys love to be outside and now that we have some great spaces to sit and enjoy shade they are always ready to go out there. I haven’t been as concerned about bears during the daytime, as the earliest we have seen them is 3:00. But yesterday at noon I pulled out of the driveway and scared one out of our yard. He crossed the street in front of the house and jumped into the treeline. I have seen dozens and dozens of bears but for some reason they still take my breath away when I see them. They are just so big! It’s like my brain can’t process how something that big and furry can move with such agility.

I have been trying to work with Levi on his colors, and he has been cracking me up. Definitely a work in progress. I took a video this week for you so you could see his silliness:

Levi has a birthday coming up in November and I found a company that writes books using your kids as the main characters. You design what each character will look like and choose the story topics. I worked to make one for the boys, as they both love hearing me make up stories about them at night. I don’t have the finished product yet but the sweet cover made me cry.

Special needs parenting is just so complex. There is so much grief, but you have to mask that even in your own home. I never want Levi to see me grieve over Malachi’s differences. I want him to see Malachi for the beautifully unique creation that he is. And I absolutely NEVER want Malachi to know that his challenges sometimes break my heart for him. I have to create a world where the challenges we face are seen as normal.

Seeing this cartoon made a lump creep up in my throat as it represented the life I imagined I would have…two healthy brothers climbing trees, scraping knees, and loving adventures together. My heart hurt for Malachi, knowing that he can’t get his body to do the things his mind wants him to do. My heart hurt for Levi, knowing the instant responsibility he has thrust on him to help his brother. I truly don’t think Levi will ever see it as a burden, but the loss of his normalcy in that hurts my mommy heart. It is an extra push for me as a mother to teach Levi about the unconditional love of Jesus, and how we show that love to others when we serve them.

Oh, the depths of special needs parenting are so thick.

But when I look at them together I see the bond of two brothers who love one another with all of their hearts. I think I am prematurely mourning over something that neither of them will ever mourn.

This book will be a special one for us all as it allows each of us to use our imaginations.

And on a totally different note, I saw a photo this week and I don’t know that I have ever related to an animal more in my life.

Take a look at these mountain goats..

When I saw these images I thought to myself, “THAT is a perfect image of special needs parenting!”

Facing mountains that look impossible to climb. But those steep, vertical walls are the ones we must scale in order to give our kids the most full, rich lives we can. Just like these silly mountain goats we search for a single ledge to put just one foot, and step by step we work our way dangerously up the mountain.

The Bible talks a lot about mountains, and the visual pictures each verse paints is powerful. When I was young in my faith I clung to the verse about faith moving mountains. What a powerful thing!

But as I walked deeper with the Lord and he revealed this different plan He had for my life, I started to understand that some mountains are not meant to be moved. They are meant to be scaled perilously, step by step…not knowing where the next foothold may be, but trusting that God will guide your foot to it.

Psalm 121:1-2 “I lift my eyes to the mountains- where does my help come from? My help comes from the Lord, the Maker of heaven and earth.”

Time and time again we will each encounter mountains. My mountain will likely look very different than your mountain but the daunting nature of those mountains will be very similar.

You may be like me, and try to “pray away the mountain”, closing your eyes hard and mustering all of your faith to command the mountain to move. But when you open your eyes the mountain still stands, sometimes growing larger each time you look at it.

Sometimes we are called to climb. Because it is in the climb that our faith gets the chance to mature and grow. Trusting God sounds simple, but when you rely on Him as you scale the mountain, you start to truly understand the importance of a God with an aerial view.

Who knew a photo of mountain goats would be such a spiritual encouragement for me this week!

Please continue to pray over the health of our family, and pray that some of the wackiness gets ironed out this week for Jake.

Much love,

Leah

Looking for Lovely

This handsome seven year old lost another tooth this week. I was brushing his teeth and out it popped! I think Levi was more excited to share the news with daddy than Malachi was.

Look how long those legs are getting! We are cautious about telling Malachi about imaginary things like the tooth fairy and santa; we don’t want to plant a seed that some of what mommy and daddy tell him isn’t true. But we do tell him that some kids believe in a fairy that takes their teeth and leaves presents, and we let him pretend too. We put the tooth under his pillow and the next day he gets a special treat from mommy and daddy, usually a chocolate bar.

Levi and mommy returned from Cincinnati with minor head colds. I tried desperately to keep Malachi from catching anything but grew discouraged when I watched in horror as Levi wiped his snotty nose on Malachi’s hair. Thankfully neither Jake or Malachi caught it and we were healthy again by the middle of the week.

Levi does not handle any congestion well with his airway, and this go around was not an exception. He had a very difficult time sleeping which trickled down to Malachi and I also having a difficult time sleeping. I ended up dragging our giant bean bag into the living room so I could separate the boys from one another and keep everyone close.

We tucked in for the week, going on drives periodically to give the boys some adventure. We also spent a lot of time outside enjoying the cooler fall-like days. Malachi loves to listen to the sounds of nature.

We did spot a single bear print on the edge of the pool cover this week. We are really hoping they will leave it alone!

I have been so relieved to have our Cincinnati trip behind us. Right now we don’t have any surgeries on the horizon until next summer and I feel like a weight has been lifted. I have started tackling some big phone calls and paperwork packets I have been putting off.

One of the big projects is filing an appeal with our secondary insurance for Levi’s surgery. They sent us a letter telling us that Vanderbilt could do the surgery and there was no reason for us to go out of network to Cincinnati, therefore they would not be paying any of the bills. Clearly taking him to surgeons who did not complete the original experimental surgery is not an option, but we are hitting brick walls with insurance even after getting the surgeons to call and explain the situation. I will keep filing, but it looks like we may lose this battle; and unfortunately this will set a precedent for each additional Cincinnati surgery trip that will be required in Levi’s lifetime.

We did get approval this week for Malachi’s homeschooling, so I will start trying to find the right pieces of equipment and curriculum to get him rolling here at the house. Taking on his schooling will be a big endeavor so I am no longer going to be able to handle working office hours part time as the church secretary. But maybe one day when things settle back down I can jump back into that role, as it has been a good mental distraction for me from all things medical.

Levi has not enjoyed being cooped up this week and has been getting into all sorts of mischief. He has been pestering the fire out of Malachi, and one day this week he accidentally hit Malachi with a toy. Malachi was livid, and stayed mad at him for about 4 hours. Seeing his anger made me smile, as weird as that sounds.

Levi tried to make up for it, bringing Malachi stacks and stacks of toys to try to cheer him up. He genuinely felt bad and confessed the whole story again, with reenactments, when Jake got home.

He has also decided that Malachi should be fed the same snacks he gets and has been “sharing” his snacks with him. Malachi can’t chew and choked on food, so eating most foods is very dangerous for him. Today I jumped in the shower and Levi popped his head in and told me that he put shredded cheese in Malachi’s mouth. Twice this week I caught him shoving tortilla chips into Malachi’s closed mouth, and once I caught him pouring water from his cup into Malachi’s mouth. Each time I race over to find a wild eyed Malachi trying to process what to do with the foreign objects in his mouth. Poor big brother!

Levi has been wearing a thick winter Carhart coat and this silly hat around the house just for fun.

He then decided that Malachi also needed a hat and dug this one out of a kitchen cabinet. Malachi thought it was hilarious that he had a bowl on his head and was cracking us all up with his funny faces.

Both Malachi and Levi have such big imaginations! Malachi acts out the scenes from the movies he watches, yelling when the characters yell and even crying when they cry. Levi has started making up stories about all kinds of things. This week he told us that the dog down the road bit him in his arm and that a bear also bit him and then ran into the woods. He can spin quite a tale.

Jake and his amazing friends spent another Saturday working on the therapy pool area for Malachi. I have been blown away by how kind the people in our community are, and several of them have given up entire Saturdays to help make our vision a reality. We would have never been able to afford outsourcing a project like this one.

Tonight we had our weekly youth Bible study out there and having the extra space to spread the teens out was a blessing. We still have a few more Saturdays of work left to finish the electric and small touches, but I am so thrilled with how functional it is for Malachi to swim in all weather settings.

We added a slide off the back and Levi boldly went down it all by himself this weekend. Malachi also rode down it with mommy and daddy, squealing with joy the whole ride down.

One of the most challenging things about being a youth pastor is trying to figure out which direction God wants us to take the group next. Sometimes the topics and themes I personally want to do are just not the right fit for where the teens are spiritually. We have been praying about what direction to take the group and listening for God’s prompting.

On Sunday nights we split them up and the girls do a Bible study with me. We are kicking off a new study called “Looking for the Lovely” and the topic strikes such a nerve in my heart.

If you have read the blog long I am sure you already know that Philippians 4:8 has become my life verse. I have it plastered on our living room wall, and recite it over and over again in my mind most days.

“Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent, think on these things.”

This verse used to be an easy one to incorporate into our lives before Malachi was born. It is easy to focus on the lovely when you are immersed in the lovely.

It wasn’t until challenges hit that I truly understood how radical living this verse out could be. There are days when I can’t find the lovely. I can’t find the praiseworthy things, or the excellent things. My mind searches for them but can only find hard, and discouraging things to focus on.

I am in a world that I have very little control of, but the one thing I can continually attempt to control with some success is my thoughts. The Bible tells us to take every thought captive and not let our minds wander too far from where we need them to be.

Although looking for the lovely can be challenging, I see the importance and benefits of the hunt. When you train your eyes to see through darkness looking for glimmers of light, you don’t have time to focus on the overwhelming nature of the darkness.

Looking for the lovely can be a wonderful distraction and keep us from settling in that darkness where fears have a chance to grow beyond recognition.

I don’t know what darkness you may be facing, but I want to encourage you to search high and low for those flickers of lovely in your situation. They are there- God always leaves evidence of his goodness and grace for us to find. Maybe you can collect enough of them in a jar and use them to help you get to the other side of the darkness.

May God bless you this week,

Leah

The Unseen

Today I want to cut right to our surgery updates while they are fresh on my mind.

 

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In order to do so, here are a few big background pieces you need to know:

-Levi was born with bilateral vocal cord paralysis, which means both vocal cords are paralyzed partially open. In his case they were paralyzed very close together and he wasn’t able to breathe when he was born.

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-The current treatment for this condition is to put in a trach and hope that the cords start moving by the age of five, a 50% chance. This was the only option presented to us at birth, and I was devastated.

-We found a few hospitals across the nation that were trying experimental surgeries (had done 4 total surgeries at one and 19 at another) for Levi’s condition and two were willing and eager to try some things on Levi to avoid the trach. After much prayer we transferred him via air ambulance to Cincinnati.

 

-Much to our disappointment, Levi failed the first experimental surgery…then the second…then the third. After 4 months of trying surgery after surgery I had my pen ready to sign off on the trach. I asked to speak to the head surgeon one final time and he came up to Levi’s NICU room. I remember asking him “I need you to verbally tell me there is NOTHING else we can try.” I will never forget the look on his face when he said “Well, there is one more thing we can attempt but it is a very difficult surgery involving four surgeons. We have only done it on one other baby and he was much larger than Levi, but I am willing to try it.”

-Within the week Levi had a single stage laryngotracheal reconstruction where they placed a piece of his rib in his airway to help prop it open. It was successful and we were able to avoid the trach! One of the biggest fears the surgeons have had is that the airway wouldn’t continue to grow with him and in a few years our solution would not be enough and the trach would still be needed.

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-From a parent standpoint we really took a gamble in assuming that Levi’s cords would not wake up by age 5 and treated this as a lifelong condition that needed a permanent solution rather than a temporary one. Levi is nearly three, so as of now we guessed correctly. His cords are still fully paralyzed.

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We are on an annual checkup basis with the team in Cincinnati, and this was the week. Jake and I were both confident that his vocal cords had not awakened; we can still hear some squeaking when he is active and when he is sleeping which tells us they are pretty close together. But most of the time when we take him for these appointments there is some sort of trimming or stretching that needs to happen in the operating room. We sign off on all the possible interventions and wait and see what they end up doing.

We met with his surgeons leading up to surgery day and they were all very encouraged by the clinical signs they were seeing with Levi (what you can see/hear when you are around him and what his oxygen numbers are doing when awake).

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When I met with them post-op they shared with me that he looks GREAT from an airway perspective. He has some floppiness in his trachea (tracheomalacia) and lungs (bronchomalacia) that looks stronger than last year. But the biggest news is that his airway IS growing proportionately with him! That was one of the biggest fears and unknowns that would lead us back to a trach conversation. His airway is naturally widening beautifully.

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I asked if it looked like he would lose the ability to speak based on how wide it is getting and they said at this rate that we can expect him to continue to have a voice. I also asked if this would increase his chances for aspiration since the opening is wider leading to his lungs and they said that it looks like Levi is learning how to direct food and liquids down the right path for now.

We talked about Levi’s airway for several minutes, and their excitement was noticeably contagious. We have dealt with a lot of surgeons over the years, and I have never been able to see legitimate excitement on the faces of the people in the room. She shared with me how they had talked about Levi in the operating room and how severe his case was at birth. She turned to me and said “Levi has really defied the odds that WE even had for him. We were talking about how bad his condition was 2.5 years ago, and even we didn’t think we would send him home without a trach. But to see this work for him so beautifully has given us so much encouragement and hope.” She then explained that because of his success, they are starting to do this surgery on more and more babies with this condition to avoid the trach. I left that small conference room fully believing that they were as happy as I was with the day’s report.

Since this was and is still an experimental case we will continue to be followed likely for Levi’s lifetime. It doesn’t mean that the issue is “checked off the list” and we could be facing more minor interventions in the future on his airway but it seems we have crossed the threshold into “safe” enough to not even mention the trach anymore. The surgeons aren’t quite sure yet how much physical activity his condition will allow, but those things are minor and nothing to fret over right now. As of now, we will continue to go back each year for another look to make sure things are continuing to progress.

As far as the trip itself, traveling went well and I stayed awake by listening to some old movies on the portable DVD player. Sound of Music, Seven Brides for Seven Brothers, Cool Hand Luke. I kept a stash of toys in the passengers seat and tossed one to Levi every time he started to fuss.

We stayed with my dad who lives about 45 minutes north of the hospital. Levi had so much fun playing with my younger siblings and visiting with family. But sleeping in a new place really threw him for a loop and he stayed up most of the night prior to surgery.

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The morning of surgery was a rough one with a Covid test for Levi. He was VERY VERY upset by the intrusion and still talks about the whole incident. The test came back negative and we waiting for another hour or so before surgery time.

Levi’s main surgeon came in and asked the same question she asks every time we see her: “Have you gotten a swimming pool yet?” And this year I beamed and shared with her that YES we have. In a very tearful medical conference with Levi’s team two years ago I shared with them my vision that both boys would be able to swim together one day. Trached children are at a huge risk when swimming or bathing and swimming is literally the only thing that Malachi can do independently. I remember mourning over those brotherly moments for them as we were close to losing that dream.

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My family bought Levi a baby doll this week and it proved to be a lifesaver for him. He was so distracted by taking care of the baby that he didn’t get too restless. And the nurses were able to do each of the necessary steps to the baby doll before doing it on Levi, which helped him.

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I had talked to Levi about what was going to happen when it was time to go to the operating room, so when they came in to get him he clung to me tightly and started crying. They had to pry him off and take him out screaming, which was so hard for my mommy heart. But I had to pretend for his sake that it was a completely normal thing to do and that I wasn’t worried.

It took them 5 pokes to get an IV this time around, and he had already awakened by the time I was called back to the recovery room. I never need directions to Levi in the recovery area, I just follow the squeaking! Once he got back into my arms he calmed pretty quickly and did not require any post-op oxygen. Shockingly after not sleeping the night before, he didn’t rest again until 9:30 that night. That is opposite of how he usually is, and this momma was too worn out to consider making the drive back to Tennessee that same day.

Surgery days are a whole myriad of emotions for me. There is the constant nagging of worry and fear, but I have to stifle those emotions and put on a brave face for the kids. They need to feel my confidence. My appetite disappears for days leading up to surgery and I have a hard time sleeping. The combo of it all is so physically and mentally taxing, and when it ends it is such a rush of so much relief.

This sounds a little crazy, but even Jake and I don’t talk much on surgery days. We are usually separated for them, as he cares for whichever child is not having surgery. I have a hard time talking about the things that are happening, and he has a hard time hearing them. So I text him when he is being taken back and again when I am done talking with the surgeons, but other than that we shut down for several hours on surgery days. It is best for both of us! Jake’s personality commits to the “ignorance is bliss” mantra…honestly you all know more about the actual day than he does haha!

I save my breakdown for when that first moment of solitude when we arrive home after a surgery trip. Jake takes both boys and I spend time crying in the shower and letting all the built up emotions go. Yesterday as I let the water fall over me I found myself crying out to God, “I’m so tired of fighting. How much longer do I have to keep fighting?”

Okay, now back to surgery day.

As I sat in that waiting room all of the memories flooded back to the many times I stared at those same windows and walls. I thought about the many emotions I had experienced in this same room…anxiousness, excitement, fear…but this time I just felt indifferent to the situation. And then I hated that I had become so calloused and indifferent to surgeries. I never imagined a life where major things would feel so minor. I was obviously worried about how Levi was handling things, but knew he was in good hands.

But then my mind wandered towards what could have been. I started to allow my imagination to process what this day would have looked like had we put a trach in Levi at birth. His cords haven’t started working yet, so we would still be in this same seat, staring at these same walls, but I would have been wracked with hope that THIS would be the time his vocal cords would be seen moving. Hope that THIS would be the day we got our miracle.

And while we haven’t gotten our miracle, God has led our family to the next best thing, and taken us on a healing journey. So maybe we did get our miracle? Who exactly decides which things are truly miraculous? Maybe our definition of miracle and God’s don’t match up the way we think.

As I sat in that chair I could visually see a tense, worried version of myself sitting there…a momma who was about to hear news that her son’s trach wasn’t ready to come out yet. That he would live at least another year with limitations, home healthcare, and disappointments. My heart felt her pain.

And then as I looked in the reflection of myself in the window I realized how truly blessed I am by God to be sitting in the waiting room expecting to hear that nothing has changed…and that report being good news.

Perspectives are astounding things. They can literally revolutionize a situation and breathe life back into it.

2 Corinthians 4: 16-18 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an external glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

This week I got a glimpse of the “renewing” that the verse talks about. It is a process that sometimes we don’t get to witness, but nevertheless God renews us day by day.

Today I am thankful for the things that remain unseen. I am thankful that God’s plan for my family is so beautifully unseen.

And I pray that I can continue to find contentment living in the unseen. Without the glimpses of unseen moments that sneak into our lives, we don’t get the chance to really appreciate the seen.

I never imagined I would emerge from a hard surgery week singing the praises of our God so loudly. Yet here we are.

Thank you for your prayers this week, and all the many ways you lift up our family behind the scenes.

Leah

 

Mourning

We had another week of survival mode in the Carroll house, desperately hoping each night would yield more sleep than the previous one! I *think* we are getting closer to finding that routine we so intensely need and I am praying our Cincinnati trip won’t mess with the flow.

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Malachi has been struggling with tummy aches that lead to some pretty awful seizures. One night this week his seizures kept him awake until 5am, then Levi woke up for the day at 7:30. I think the biggest battle for me is mentally dealing with the unmet expectation of sleep. Thankfully today was a slower day for us and we took turns getting a nap in!

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Malachi’s seizures have caused his little brain to go haywire and his body temperatures have been up and down. His forehead will feel perfectly normal but his back will heat up to over 100 degrees. It is definitely a brain issue rather than a sickness issue but it requires some creativity on keeping the hot spots on his body cooled down.

We have been spending a lot of time in the playroom- in the pictures below you can see Levi pretending to shave Malachi’s face. It made me smile to see him want to take care of brother, and it also made me consider how this will likely be a reality for the boys in the future. I hope that little Levi’s desire to help care for Malachi always stays this strong!

Sunday night Bible studies in our driveway have been working wonderfully. Thanks to some helpful friends we are able to keep the boys away from the crowd, and all bathroom trips are in and out through the basement.

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This weekend Jake and some of our amazing friends tackled the therapy pool pavilion again and made so much progress! We are so incredibly blessed to have such a support system in our lives to help make our goals for Malachi a reality.

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This weekend we have spent hours out there. Now that the sunshine issue has been taken care of, Malachi is extremely comfortable. Tonight we sat out there with our toes in the water and watched the sunset.

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Last night my brother and his family came out for a night of swimming and smores, and watching Malachi swim with his cousins was so special to me. He was so proud to be swimming all by himself with the big kids. He also really liked sitting by the fire.

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Inclusion is so important to Jake and I, and being in a home that provides those opportunities for Malachi to be included in everything is a dream come true. We are so blessed beyond what we deserve.

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Levi has been in full on mischief maker mode. His energy never seems to end and his curiosity is increasing each day.

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I have felt anxiety creep in this week as I mentally start to prepare for our Cincinnati trip on Thursday. I keep flashing back to the lobby of the hospital, and the exact place I was sitting the night we arrived. It was around 3am and I had gone down to the lobby briefly to meet my dad. While we were talking my phone rang and it was the NICU doctor telling me that Levi had just coded and they were bagging him. I jumped on the elevator and raced back into the unit to find Levi’s lifeless body rising up and down with each puff of air the doctor manually put into him.

There are certain scenes my mind will never forget, and unfortunately Cincinnati Children’s Hospital was the backdrop for many of them. Anytime I enter that hospital my heart sinks as the memories flood back. This will be the 27th time I have sat in the OR waiting area, anxiously awaiting the call from his surgeon to tell me they are done and he is stable.

I will start the pre-surgery routine this week…clip my fingernails off so I can’t chew them, wear dark colors in case he ends up with post op bleeding, delay drinking liquids that morning so I don’t go into the bathroom and miss them calling my name over the loudspeaker.

One of the highest anxiety times is the moments after the surgery when I am shuttled into a small room and wait for them to come in and report the outcome. With his airway issues we never know what they are going to have to do before he enters the OR so I am always eager to find out what they ended up cutting, stretching, and fixing so I can know what recovery will look like. And then as soon as they are done talking my anxiety mode switches to getting back to the recovery area to lay my eyes on my son. Almost every time I can find him with my eyes closed just by following the post-op squeak he often has…it is one of a kind.

This week Facebook memories brought up this photo from 5 years ago.

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What a precious little lamb! Up until this point Jake and I had done a pretty decent job of holding tightly to our hope for Malachi to typically develop. But at two years old Malachi still wasn’t able to sit independently and medical professionals started to talk about assistive devices and wheelchairs. They were so kind with their words, recognizing that our hearts weren’t ready for a reality check.

We borrowed this wheelchair for a few weeks to try it out and this was his first time in the chair. As I studied this photo this week it reminded me of the emotional journey we have been on as we try to process life with special needs children. It is a complex journey that is filled with so much joy, sorrow, and unique perspectives. I wrote a small post with this photo on my Facebook page and thought I would share it here as well.

The grief of a special needs mother is so unique and hard to explain. We grieved the moment we were told that our children’s lives would be filled with challenges, but our grief is ever-evolving… a grief that never truly ends.
The first seizure, the first wheelchair, the first tears from Malachi over being excluded, the first (and twentieth and fortieth…) surgery, the missed milestones other parents get to celebrate. The grief is continual, and hits at unexpected times.
I remember taking this picture 5 years ago and being hit with a wave of grief. I had to mask it because Malachi was so excited to be sitting up by himself, so I choked back my tears as I recognized this would be the first of many wheelchairs in our lifetime.
But that sweet Malachi smile snapped me out of it. My moment of mourning was his moment of pride- What selfish creatures we can be to only focus on our unmet expectations and not see the beautiful moments hidden within.
Grief can choke you if you let it. I have to remind myself several times a day to focus on praiseworthy things. We allow ourselves a moment to mourn, then we search hard for the praiseworthy. And often times the best teacher for me is my seven-year-old nonverbal son. What a rare and beautiful gift we’ve been given.

Tonight as I mentally prepare for this week’s medical trip I find myself wanting to mourn again over our loss of normal. But as we read in Matthew 5:

Blessed are those who mourn, for they shall be comforted.

I believe with all my heart that God didn’t design us to sit in a state of mourning for very long. We can mourn over our sin, we can mourn over death, we can mourn over disappointment. But it is during those moments of brokenness that we must soften our hearts enough to receive the comfort God is eager to give.

God didn’t design us to dwell in the brokenness. But brokenness can be a catalyst for our hearts to call out to Him.

Clearly I am still struggling immensely with moments of grief and brokenness as a mother. But I am so grateful that time and time again God receives me with open, comforting arms. Mourning in of itself isn’t a bad thing, but finding a comfortable home within it instead of desiring to run to God can be.

I apologize for the splotchy blog entries lately- I am usually trying to get the boys calmed down for bed as I type them so there is no telling what the final outcome will be. Please cover our family in prayer this week; specifically for these things:

-safety for Levi and I as we travel

-health and sleep for Jake and Malachi as they stay in Tennessee

-comfort for Levi’s medical PTSD

-minimally invasive surgery needed…and no surprises!

-a report that his vocal cords are moving (our miracle)

-wisdom for doctors and Jake and I to know what to do next

I am praying that next week’s blog will be full of wonderful reports and praises!

Much love,

Leah