I have stared at the computer screen for a solid five minutes trying to figure out where to even start, and all I could come up with this weird title- which I will explain about a bit more later in this blog.

I tried to get some cute photos of the boys this afternoon after church. While it was mostly a fail I did manage to get some sweet smiles over the course of several pictures.

Another wacky week of therapies and appointments. I feel like at some point I am being redundant by highlighting all of our medical appointments and therapies, so I will focus on the noteworthy ones. Levi had his repeat hearing test this week, a suggestion made by the NICU in Cincinnati upon discharge. With his medication history he was pre-disposed to having hearing issues, but thankfully he passed! I can’t help but laugh at most of our appointments when they tell me what the requirements are. For this particular one she explained that he couldn’t be moving or crying while she put an ear plug in each of his ears for roughly a minute each.

Sometimes I wonder if I am in some weird psychological experiment to see how many “impossible tasks” medical professionals can throw at a mom until she breaks haha. Bring it on Sigmund Freud.

The boys are still just as sweet as can be with each other. Levi has recently started to hold Malachi’s hand.

While we were in Pigeon Forge last week on our getaway I ran by the outlet stores and stocked up on matching clothes for the boys. While I admit that I love matching them, Malachi genuinely gets a kick out of matching Levi. Malachi is about to grow out of the toddler sizes so buying them the same shirt in different sizes won’t happen again until Levi is Malachi’s age.

And of course, most of the outfits are superhero themed since, well, they are basically superhuman kids. 🙂

Levi is still “crawling” and getting incredibly fast at it. I am worn out from chasing him around the house trying to keep him from pulling out his tummy tube or getting his wires caught on anything.

Malachi was invited to a friend’s birthday party, and since those invites are rare we tried hard to make it happen for him. Jake had a church event so I was solo with both boys; Levi is officially into a separation anxiety phase and can’t be out of sight from me without losing his mind so handing him off to a willing friend isn’t an option. But we got there and settled in.

The birthday girls mom let Malachi in on a big secret that there was a full sized chicken in one of the boxes. Apparently the 6 year old had been asking for one for her birthday so they boxed it up for her to open. Malachi was grinning with anticipation while she opened her presents and the boxed up chicken did not disappoint. As soon as the box opened the chicken sprung out, grazing children in the head as it “flew” frantically around the room. Of course every child in the room began screaming in sheer terror as it looked for a place to land, eventually settling on the head of an older woman in the crowd. Malachi thought the whole scene was the best thing he had heard in a long time and couldn’t stop giggling.

I took this video a few minutes later- I think he was hoping that the next package would be another exciting chicken.

Malachi went to school three days this week, which made him one happy little boy. We saw one of his teachers in town this week and he was so excited to see her outside of the school setting.

The weather here has been beautiful and the boys have been enjoying coming out to the soccer games this week! I have a new set up in the back of the van where Levi can crawl around and Malachi can sit in his special bean bag seat. My mom comes to supervise them and we park them right next to the field! It has been working wonderfully for now.

I have a whole lot of nonsense to blog about tonight, and in no particular order so bear with me.

My first thought tonight was about the importance of choosing contentment. I know I talk about this a lot, but it is so very vital in the life of a Christian. There are so many moments in my day that I feel a mourning moment creeping into my soul as I think how things “should have been”. Truthfully, things like the birthday party this week are hard for me as I am surrounded by kids Malachi’s age all doing things Malachi “should” be doing. That lump in my throat starts to form as I watch them effortlessly climb and jump.

But then my pity party radar goes off and I take my eyes off the children and look at my Malachi, grinning ear to ear listening and waiting for the chicken in the box. The life that he knows is full of joy, and I have to remember to be grateful for quality of life Malachi does have. And if Malachi is content, then it only makes sense that I choose contentment as well.

But contentment is a heart issue. It is something that only God can do as He had to transform your mind and heart. Contentment alone is easy when things are going well. But true contentment in less than ideal circumstances is indeed a gift from God that can only be manufactured by Him.

This Wednesday we started a new Bible study with the kids in our youth group and used this verse as our springboard:

Hebrews 11:13-16

¹³ All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. ¹⁴ People who say such things show that they are looking for a country of their own. ¹⁵ If they had been thinking of the country they had left, they would have had opportunity to return. ¹⁶ Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.

Hebrews 11 is commonly known as the Faith Hall of Fame as it lists so many people acknowledged for their extraordinary faith. Reading through their stories is inspiring and we tend to stop at verse 13. But these verses are just as important for us to remember!

It mentions that even until the moment they died, they were still living by faith. But even more noteworthy is that they acknowledged that they were strangers on earth, looking for a country of their own. The more God works in the Carroll family the more I see the beauty and peace that comes in knowing that this is a temporary place for my family.

I find myself longing for a better country…a heavenly one. A place with perfect legs, perfect brains, and perfect vocal cords. A place without exhaustion and caffeine addictions.

But there is a reason that each of us have been placed on the earth. Do we recognize the significance of that mission? Do we see the opportunities God gives to us to share our faith with others? Do we look to be the hands of Jesus for others?

Are we treating this life like it is a temporary pilgrimage on our way to a heavenly home? Do our priorities in life and the things we focus our time towards reflect our recognition that this life is temporary? Or do we cling to the idea that this world should be about us?

I have been challenged lately by God to “pour myself out”. I laugh as I type this because if I shared a typical Carroll week with you would be blown away by the number of things we pack into a week. But God continues to ask us to do more. So we pour and we pour, and then we watch as God replenishes and uses the pouring moments to strengthen our own faith.

He keeps reminding me that this is not my home. But until that day comes I am called to give, give, and then give some more. And to do so without expectation of return or reward. Simply because that is what God asks of us.

My thought challenge for the week…are you pouring your life into others? In what ways does your life make a kingdom impact? Or are you more concerned with making your time on earth a comfortable one full of luxuries?

Are you trying to make this earthly pilgrimage a reflection of the heavenly life you desire?

Let me challenge you to pray about what you have been placed on this earth to do. What people has God allowed your path to cross with for a very specific reason.

I am literally going cross-eyed with exhaustion tonight but want to write more…I guess I will have to save those thoughts for next week!

God bless,

Leah

Oh my what a week we have had!

Let’s start with the boring medical info. Monday night was the dreaded sleep study. I begrudgingly checked us in at 6:00pm and the wires were in place by 7:30.

I counted the wires alone and there were exactly 50 glued to his head, face, and body. He also had two bands on his torso and chest. Levi was not happy during the gluing and wrapping process.

This time around was different than his previous studies as we were trying to figure out what to turn his oxygen up to in order for him to sleep comfortably. He is safe at a lower flow but doesn’t stay in a deep sleep very long, so they wanted to try cranking him up. They started at 1/2 liter and the nurse did not turn him up throughout the night, which is a good sign.

That is the tricky thing about sleep studies- you have no idea if it is going well or not. All of the monitoring equipment is hidden from view except for the carbon dioxide output machine which was at a safe level all night. We will get results April 11 when we meet with his Chattanooga pulmonologist. From there we will schedule his next throat scope (called a microlaryngoscopy and bronchoscopy) in Cincinnati.

Levi slept pretty soundly; MUCH better than the last study. The test ends at 4:30am and they come in, wake you up, and take all the wires off. It is a rough way to wake up but boy was he happy when all of them were finally off. It took three long baths to get the glue out of his hair!

Malachi ended up staying sick through Monday but since Levi didn’t seem to be coming down with anything we kept his therapy appointment on Monday. Tuesday both boys had feeding therapy. Wednesday both had GI appointments and Malachi had horse therapy.

I officially changed my first g-tube alone, and hated every moment of it haha. Oddly enough I am easily grossed out by medical things. This life makes me suck it up and fight through it but some things still give me a heebie jeebies. Changing Malachi’s tummy tube was no exception.

With all the medical appointments out of the way for the week and Jake on spring break we attempted our first non-medical getaway! As you already know, traveling with the boys and their gear is very challenging. I went back and forth all week trying to decide whether it was worth the trouble but breaks like this don’t come often so I finally pulled the trigger and booked a condo in Pigeon Forge.

We have to have a full kitchen with a fridge and freezer to accommodate medications, formulas, ice packs for feeding bags, and a sink for washing/sanitizing. We prefer ground floor in case of emergency and handicap accessible is always a plus.

Levi requires a large tank of oxygen per night (3 feet tall) and 1.5 small tanks per day. He uses an IV pole at night for his feed bag, his feeding pump, and a pulse oximeter to monitor his breathing and heart rate at night. Between both boys we administer 9 medications each day, all requiring syringes that have to be washed after each use. Then there are the bottles, feeding pump bags, formulas for each boy, diapers, tapes, g-tube dressings, and back up EVERYTHING. We have to think of every worse case scenario and prep for it, as most medical things we use can’t be purchased at just any drug store.

This time around we brought a 25 foot cannula for the hotel room so we would be able to move more than 5 feet from the tank. We also took that to the pool so Levi could swim with his oxygen on (more on that in a minute).

After I booked the hotel we started talking to Malachi about our big adventure and he was wide eyed with excitement. When the time came for us to officially leave he was wild! The first stop was to a dinner show called the Hatfields and McCoys. We had told Malachi a little bit about the show but we didn’t know what to expect.

Malachi LOVED every second of that show. They shot guns, had people clogging (dancing with loud shoes), dynamite, and his favorite- dogs jumping into a pool. He doesn’t see well so I made sure to narrate every scene. His imagination was on fire and he acted out whatever he was hearing. At one point two characters were fighting and Malachi intently listened, swinging his little arms like he was in the fight too. Seeing his excitement was heart warming.

Levi screamed his head off in sheer terror for the first 30 minutes, wondering why we brought him to such a crazy place. Then after he settled down he watched the show intently.

The next day we grabbed some lunch and went back to the hotel for a swim.

Malachi was shaking with excitement as we prepped for the pool. Levi had never been in a pool before so we weren’t sure what to expect. Thankfully he loved it!

Malachi didn’t want to sit still for a picture and kept trying to swim away. This is his determined face. He loves the independence that swimming gives him and doesn’t want to stop for silly mom pictures.

Look at those semi-straight feet! Progress!

Someone asked this week about swimming and their g-tubes, which is a great question so I thought I would answer it here for anyone else who might be interested. Most of the rules for g-tubes are contingent on the stomas, which is a fancy name for the actual hole that the device goes into…kind of like a pierced ear. We have to keep this area dry and clean to prevent infection or skin breakdown. Right now both boys have beautiful stomas with no skin issues (praise the Lord!) so we felt a little more comfortable attempting a public pool, although we will not do this often.

Lakes, rivers, and other bacteria ridden places are a no-go but properly cared for public pools (no public hot tubs) are okay if the stoma is okay. We asked about how often the chlorine levels are checked and felt that this place worked hard to maintain their pool, giving us a little more peace of mind. The stomach is a non-sterile environment anyway full of bacteria so it is a little more acceptable than say a surgery site.

Speaking of germs, in my neurotic Leah way I took my rubber gloves and hospital grade wipes and spent a solid thirty minutes sanitizing the germs out of our rental! Always a must!

We headed back to the room for naps, then attempted a late night comedy show with juggling, dog tricks, and all sorts of other fun things. We made it to the intermission before Levi melted down so we headed back to the hotel for meds and bed.

This is Malachi’s “listening intently” face.

Levi did not like sleeping in a new environment and woke up in a panic several times a night. It was pretty pitiful to see the terror on his face.

Malachi takes weeks to recover from any respiratory illness as he doesn’t know how to cough and clear his throat. He wakes up coughing at least two or three times each night still and has to throw up to clear his throat. It is pitiful to see and upsets him every time. I am hoping this week he will be able to sleep more soundly.

We left his chair in the car one evening and had to improvise a bit, much to his amusement.

Saturday morning we packed up and headed out, stopping by the Jurassic Jungle Boat Ride on the way home. It is a 7 minute boat ride through a pitch dark cave with animated life-like dinosaurs that jump out at you. We knew that would be a grave mistake with Levi so mommy and Malachi went and I narrated the dinosaurs for him. Because it was dark he was able to see a bit better than normal, but just listening to them was a thrill for him. His favorite part was two t-rex dinos fighting and he will act it out for you if you ask him, roaring and swinging his arms like they did.

He still hates the sunlight and wouldn’t open his eyes for our picture.

Overall it was such a great trip for our family. Giving the boys “normal” experiences like these is something we need to try to do more often. Malachi was such a 6 year old, unabashedly excited about each new leg of our adventure. He giggled more in those few days then he does in a typical week, and that alone makes it worthwhile.

Levi is in a difficult stage (for us) and is extra whiny. He also wants to be mobile, butt-scooting all over the place, which isn’t feasible in public. He has to be within eyesight of me at all times or he will scream until he can’t breathe. We think he is cutting his molars so we are holding on to hope that this is just a phase. Don’t let the cute face fool you!

He has also been trying all kinds of new foods this week! We are so happy with the leaps and bounds he is making.

Anytime we leave our comfort zone we are reminded of how blessed we are to live in a small town where everyone knows our quirky family. When we are in new environments we tend to turn more heads, and this trip there was a whole lot of staring going on everywhere we went. I can handle most casual looks, but the hard-core staring that lasts longer than 3 minutes makes me so uncomfortable. There are curious eyes, kind eyes, judgy eyes, and disgusted eyes. I can tell you the type without even looking directly at them, and this trip was a mix of all of the types. I don’t know if that part will ever get any easier.

On to the devotional thought part of the post. I hope this doesn’t come off at all as arrogant, so please read with the right tone in mind…

Since Malachi’s birth six years ago, God has been doing something new in my life and I have watched in amazement as He has used me in a new and unique way. The Holy Spirit prompts me to write, and when He does I simply sit back and let God do the talking through me. I know that I sound like a crazy religious nut right now, and I don’t even know if I can accurately put into words how God writes through me, but I can tell you that when I read the words the next day I acknowledge that they are not my own. I literally do not recognize them. They are simply a message from God, using my story and platform to show glimpses of God’s heart to others.

I can go blog by blog with you and tell you which parts were written by Leah and which parts were written by God. He doesn’t take over every week, but when He does it is evident and purposeful. There is a distinct feeling that happens each time, and when it is finished I have such a sweet spirit overcome me. I always know there is an intended audience in mind and knowing that they will hear a word from the Lord brings me so much joy.

When Malachi’s Chick-Fil-A post went viral in 2017 that was a God post. He prompted and I ignored for two days. And through that one post we have been able to speak to millions about the value of life in the eyes of God.

I always wonder who the post is for…and the majority of the time I never get to find out…it really is none of my business. But this week as I looked back at an older post on Facebook, one that I know was written by God, I realized that it was exactly what I needed to hear. He prompted me that day to stop everything and write- I remember Jake getting annoyed because I tossed both kids at him and headed to the closet to type haha. The words pierced my soul as I read them, almost as if I was reading them for the first time. I thought I would share them with you again just in case someone out there needed to hear them again as well.

___________________________________________________________________________________________

Let’s start with some brotherly love. We have been teaching Levi Eskimo kisses where you rub noses together. Levi has been doing it to Malachi which is so precious to see. And Malachi loves it!

As you can guess from the title, the Carroll crew has been under attack with sickness. Last Sunday night I posted the blog and within the hour Levi was burning hot with fever. As soon as 8am rolled around I started making all the necessary phone calls to cancel his appointments for the day. Then we watched and waited.

Thankfully he sailed through the sickness in about two days and this one did not affect his respiratory rate at all. He was extra cranky, but that has been the name of our game for the last few weeks…he is an opinionated little boy. Jake texted me one day this week and asked how my day was going and this picture was my reply:

He likes to follow me around these days screaming until I pick him up. Or going after the trash can. We are officially into baby proof mode. I came home and Jake had rearranged the kitchen a bit haha.

Levi is working so hard at so many things these days and I am proud of his progress! We have to go into lock down when sickness hits and with more time in the house we were able to tackle more one on one focused tasks.

Focus and proper foot placement is everything!

Here is a video showing the progress we are making with spoon feeds:

Levi is still not safe to take liquids by mouth since his vocal cords don’t close to protect his airway. When we first started trying foods by mouth Levi would gag if something barely touched his lips. We have been working to desensitize him over the last few months with feeding therapy and he is improving by leaps and bounds. This video progress is huge!

Today he cried when we wouldn’t share our lunch with him so we strapped him into his high chair and let him have a snack too.

As you can see, he was pretty pleased.

Malachi managed to avoid Levi’s sickness and our week morphed back into normal by Thursday. We made it down to the hospital in Chattanooga for Levi’s final synagis medication shot for the season. Houdini Levi has been wiggling so much lately and we are having to say “no no” to him frequently. As you can see, he isn’t a fan.

Friday morning Jake called from work to tell me he thought he was coming down with something. By 2:00 that afternoon Malachi was running a fever of 102.5 and crashed fast. He has been having a hard time keeping food down and throwing up several times a day and multiple times a night. Even on fever reducers his temp is staying high. We are trying desperately to keep Levi from getting whatever Jake and Malachi have!

Here are some photos of sweet Malachi prior to the start of his sickness. I just love him so much!!

He has been asking for his feeds through his tummy tube almost every feeding time this week, making us think that he has a sore throat.

We also went to our favorite local restaurant on Thursday night for my free birthday meal (celebrated the big 3-3 this week) and Malachi got so tickled listening to the chickens jump up into the tree to go to sleep. I pulled out the camera to catch his joy:

Thankfully Jake is on spring break this week, so continuing to stay on lock down will be much easier. Levi has a sleep study tomorrow night, which I am dreading with a passion. We have already re-scheduled this study multiple times due to sickness and the next procedure on his airway is dependent on getting this study done so I am ready to get it over with.

We did something ambitious and booked a hotel for Thursday and Friday night this week to go on a little getaway as a family. I am hoping we will all be sickness free enough to actually get to go. Pigeon Forge is a two hour drive from here and we thought that Malachi might enjoy going to some of the silly dinner shows. One of the ones I booked asked if Malachi would like a cow bell to ring during the show, which is an emphatic YES! More cow bell!

Our appointments are all in limbo this week as wait and see if these germs will go away. The boys each have physical therapies, feeding therapies, GI appointments, horse therapy, and Levi’s overnight sleep study.

I read two quotes this week that really struck a nerve with me and I have been reading them over and over again and processing the words.

“Some people could be given an entire field of roses and only see the thorns. Others could be given a single weed and only see the wildflower in it. Perception is a key component to gratitude. And gratitude is a key component to joy.” -Amy Weatherly

I have been thinking about the last sentence in that one about gratitude being the key component to joy. And the importance of gratitude in our lives is overwhelming.

The moment we start to think that we “deserve” things or that we are entitled to things we start to lose the joy that the simple feeling of gratitude can produce. Life throws us unexpected outcomes and disappointments, but when we get to the point where we can no longer find things to be grateful for then we are in a dark place.

I think the same thing is true about our walk with God. We must always remember the power of the grace He freely gives. And having a heart of humility and gratitude are so incredibly important.

The second quote hit me on a more personal level.

“I sat with my anger long enough, until she told me her real name was grief.”

Anger is something that I have struggled with over the last six years. I can grow so frustrated over such tiny things…especially the ones that are out of my control. It is almost embarrassing to think about the tiny things that make me mad.

As I read this quote I found myself nodding in agreement, acknowledging that grief drives so many of my ridiculously angry moments. This just isn’t how life was meant to be when I pictured it. I grieve every day over the dreams I had for my kids. And I grieve every hour over their suffering, wishing I could take it all away.

This morning in children’s church I showed the kids a sealed envelope and told them that even before they were born God wrote out a special plan just for their lives. I explained how God doesn’t show us what is on that plan until the time is just right.

I told them that when God wrote my plan he had on there that I would have a special son named Malachi in a bright green wheelchair and a little baby named Levi. Nothing is a surprise to God.

I also explained that there is a whole lot more on that plan that God hasn’t let me see yet, but faith means that I trust that God’s plan is way better than anything I could ever imagine. I just have to be patient and trust that God will reveal more and more of that plan to me when the time is right.

The kids processed my words and then one of the 5 year old boys said “But what if I want to see my envelope? I want to see it now not wait until later.” And my heart totally related to his in that moment.

Don’t we all want to see what is in the sealed envelope. We all would love a glimpse of what God has in store for us in the future. But if we got to peek at the envelope it would completely deplete the need for us to trust in an omnipotent God whose ways are higher than our own.

So I am working on trying to re-direct that grief from anger to faith in the unseen plan God has for my family.

Please pray for us this week, especially Monday evening for the sleep study. The last one was a challenge for sweet Levi and I can’t imagine this round will be any different. And pray for my emotional health as I can already feel the gates getting ready to burst. Inflicting pain and discomfort on my children is so challenging to process.

Much love,

Leah

In typical Carroll family fashion we managed to cram a whole lot into one week. Let’s start with some high points…

Malachi got to attend school 3 days in a row this week! We base his attendance on the health of his classmates and our crazy appointment calendar. He only goes for 2-3.5 hours but he really loves being there with his friends. They had a themed week so he got to wear his pjs on Pajama Day. He laughed and giggled as I got him ready in his moose pjs and slippers. He has such a sweet and pure spirit and such a sense of humor.

Levi- oh Levi. Never have I met a child like him.

Levi had a wellness check at the doctor this week and flirted shamelessly with himself in the mirror. I caught a little bit on video for you. Note the kisses he is blowing to himself:

I was mortified at one point when he leaned over and licked the mirror before I could stop him! I am thankful there is a separate sick and wellness side at our pediatrician office.

Let’s transition to a low point from the week that happened at our pediatrician appointment. The dreaded milestones checklist. We went through this with Malachi and for some reason it did not affect me as much as it does with Levi. With Malachi we knew there would be delays when he was born so prematurely. We expected to have to check “not yet” on those lists. With Levi we never saw the possibility of developmental delays coming so checking those boxes hurts just a bit more.

Levi is nearly 16 months old and is not crawling yet. He isn’t pulling to stand or attempting to walk. He isn’t doing a whole slew of things he “should” be doing at his age. The interesting thing is that those facts don’t really bother me…but having to give my son a failing grade on a checklist at the doctor really bugs me for some reason.

This week has been filled with those subtle reminders that Levi is significantly delayed. I ordered him a new bath chair that will contain his wiggly self a bit better and the box says to stop using when the child can pull up to stand around the 10 month range. Ouch.

But he is continuing to progress towards those darn milestones that everyone likes to focus on. Just in his own sweet time.

He even started a new crawl this week. I am not quite sure if I can call it that, but I did snap a video to share with you. One of my favorite things about this video is his sheepish little peek around the corner at the beginning to see if I was watching him. He had been going after the hair dryer cord which he knew was off limits:

We transitioned him this weekend to a real crib to help prep him for his sleep study next week. Cord management while he sleeps is stressing me out big time, and this week I had two instances of waking up to find the cords wrapped around his neck. It makes me sick to my stomach just thinking about it. We have tried so many tricks I have lost count. Last night I tried a trick with some velcro zip ties and it seemed to help, but the crib will continue to stay right by momma at night. Probably until he is 21 or he gets married.

Malachi’s seizures have kicked up a notch this week which has been a little disappointing. They still aren’t up to his former typical 8 a day but the ones he is having are a little stronger than before. We will be watching them closely and calling the doc to check his med levels if they continue to increase.

The boys have some big appointments over the next two weeks and we could use some prayers for smooth days and positive reports.

This week has been a mentally challenging one for me. Every few weeks the exhaustion of being a special needs momma gets exceptionally overwhelming and I am definitely there. I am embarrassed to tell you how many times this week I called in prescriptions or called providers and gave them the wrong kids name or birthday. “Ma’am, we don’t have a patient by that name.” Oops.

This life is mentally, emotionally, and physically draining. Even in the short hours that I get a chance to sleep I am required to be a special needs mom, using my knee to maintain Malachi’s posturing in the bed beside me so he won’t hurt or smother himself. I can’t move from that same position at night. And when I start to complain to myself I immediately feel guilty, reminding myself that Malachi can’t change positions at night either so why should I complain! Sacrificing my comfort for his is something I should feel honored to do.

I have been having lots and lots and lots of PTSD flare ups this week as my mind keeps flashing back to some horrible memories over the last 6 years. I close my eyes at night and see Levi’s face on the Cincinnati NICU video monitor, crying and gasping for air but no one is there to pick him up and comfort him. And I can’t go over there because I am stuck in a Ronald McDonald house with Malachi who isn’t allowed in the unit. Those helpless feelings still grip my heart, even though he is now laying right next to me.

Or hearing that phone ring at 2am in the Chattanooga Ronald house and the doctor telling me to come quick, that Malachi might not make it through the emergency surgery they were getting ready to perform.

Today I drove a stretch of road and flashed back to the drive home with Levi from the NICU for the first time, the muscles in my back melting for the first time in months as they relaxed realizing we were almost home and together again as a family.

This life is filled with ups and downs, but those down moments stick with me. They never leave. They don’t even become memories…they stay in real time in my mind, flashing back in and repeating themselves all over again.

I have two happy and living children yet my heart still grieves in such an inexplicable way.

This week I have been talking to Malachi a lot about Jesus. We lay in bed at night while Levi is asleep in the crib next to us and whisper about the ways that God is going to heal him. He listens intently to every word and smiles with excitement. I always make sure to tell him that we don’t know when God is going to heal him, but we believe that he will one day! I never want Malachi to feel that something is “wrong” with him so these conversations can be tricky.

I can’t wait to have a conversation with him one day about all these moments in his life when he couldn’t speak back to me. There is no manual for parenting, especially when parenting a special little boy like him.

Transparency moment here: I have a very hard time visually seeing Malachi’s deformities. I am not disgusted by him or anything like that…it just breaks my heart to see what cerebral palsy does to him, knowing there is nothing I can do to reverse the damage or stop the pain.

When Malachi is fully clothed I can imagine things where they should be, but when I go to change him or give him a shower the reality of his disfigurement can’t be hidden. His body is a road map of scars and devices, all of them needed to preserve his quality of life. Seeing them brings about waves of hopelessness. But these moments have challenged my faith recently in some big ways.

When I see Malachi’s tiny, atrophied legs the devil is quick to remind me that there is no way that a child like him could ever support weight on them- even if his brain is healed and he can suddenly walk. But this week as I fought through those hopeless feelings God brought the story of the lame man from Acts 3 to mind.

Peter and John were headed to the temple to pray and they came across a man who had been lame since birth. I always find it interesting when the Bible includes these extra little nuggets like “since birth”. This man was likely very much like my sweet Malachi, his ankles as thin as the bones inside of them.

In verse 7 we read “Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. ⁸ He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God.”

Did you catch that extra nugget in verse 7? It doesn’t just say that he jumped to his feet, but it makes a point to mention that his feet and ankles became strong.

It points out the physically impossible so we won’t glaze over it. Prior to having Malachi I never understood the significance of this miracle. God changed the anatomy of that man.

So why do I keep doubting that God will do the same thing in my sweet Malachi?

A few verses later Peter is using the miracle to tell the crowd about Christ. He says:

“¹⁶ By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus’ name and the faith that comes through him that has completely healed him, as you can all see.”

The key is faith. It is continuing to believe in the impossible, in the unseen. It is continuing to be confident that God is able and willing to heal my Malachi, but already has the perfect moment planned out for that healing, whether it be on this earth or in heaven.

Faith takes a level of endurance that I could not achieve without God’s strength. “My grace is sufficient for you, for my power is made perfect in weakness.”

So instead of looking at Malachi’s weak deformed hips, dislocated knees, tiny ankles, and outwardly turning feet and seeing hopelessness I will choose to see hope. I will choose to hear “not yet” and have faith that Malachi’s day of healing is closer than it was yesterday.

Today I choose hope. And Malachi and I will stay up late tonight whispering about all the things he is going to do when God gives him his new legs. He’ll surely be walking and leaping and praising God.

Leah