Holidays can be hard for medically complex families. I have talked about this before but it is easy to forget events, hospitalizations, and surgeries when there is an ambiguous date on them. But when they fall on a holiday the memories tend to become a little bit stickier.

Because of this, Jake and I are slow to develop traditions as we recognize that we won’t always be able to fulfill them. It “this is what we do every Christmas Day” exists and then we can’t fulfill it due to a surprise hospitalization it makes the hurt a bit bigger.

But one family tradition that we do our very best to fulfill each year is going to pick out a Christmas tree. The absolute joy that Malachi has when we pick out a tree makes it something I look forward to so much each year.

Malachi can’t see the trees but he can feel them, so we roll him around the farm and find a few that we like, naming them on their location or a distinguishing factor. The “car tree”, the “spiky tree”, the “fluffy tree”.

Well, this year Malachi voted for the “tall tree”. And getting it home was quite the hilarious task in the wheelchair van. He giggled the whole way home with excitement.

We then tackled trying to decorate the 11 foot 11 inch tree on a budget.

Malachi’s favorite thing to do right now is sit next to his tree and look at the lights.

Levi loves it too but doesn’t sit still long enough to appreciate it haha. He got a bag of hand-me-downs with a snazzy new sport coat and boy has he been rocking it.

Last week was a busy one with ten medical appointments between the four of us. One of those was seeing the boy’s GI doctor. We discussed trialing keeping Levi off of his feeds at night to see if he is ready to maintain his weight through extra food calories rather than relying on g-tube formulas to do so. Not getting his feed bag ready every night is bizarre to me and such a (nice) change in my routine. Not to mention the nighttime incidents where the extension comes loose and formula spills all over him, his bed, and his carpet. I am really hoping he can tolerate the formula wean well and this can be the new permanent thing. We will do a follow up weight check in 3 weeks to see how he is doing.

Unfortunately for Levi this week was blood draw week. We have never done well with blood draws so I tried the method of telling him the night before, leaning on the “knowledge is power” mindset.

He started out strong in the chair and I was feeling hopeful! Then we slowly lost our momentum and required some help from Child Life to calm down. But I am seeing some new maturity in him, specifically in his ability to self regulate.

Levi is still struggling with my grandmother’s passing and will still burst out in tears at random times thinking about her. Yesterday we talking about her and he asked “Mom, do you think she is watching us now?” And I said “No buddy, I think she is worshipping God!”

He thought hard about that and said “I’m not going to worship God when I get to heaven.” I asked him what he thought he would be doing and he said “I’m going to go talk to Malachi!”

The first thing he wants to do is have an actual conversation with his non-verbal brother. How incredibly special and heart warming.

Malachi is officially on the basketball team at school and is especially pumped about having a jersey! I am so thankful that we found a place for him to not only be included but also fully embraced and valued for the individual that he is. They have worked hard to learn his signs and he officially trusts them enough to open up and be himself around them. School is the highlight of each day!

Over the last few weeks I have felt fear creep back into my heart. It is a feeling I know well, like an old schoolyard bully, with some seasons bringing large waves of it back in. It creates such a panicked frenzy in me…a true storm.

As we walked through the tree farm last week I looked at Malachi and had this sudden thought, what if this is his last Christmas with us? And the fear and sadness overtook me in that moment.

Mark 4 :35-41

That day when evening came, he said to his disciples, “Let us go over to the other side.” Leaving the crowd behind, they took him along, just as he was, in the boat. There were also other boats with him.  A furious squall came up, and the waves broke over the boat, so that it was nearly swamped.  Jesus was in the stern, sleeping on a cushion. The disciples woke him and said to him, “Teacher, don’t you care if we drown?” He got up, rebuked the wind and said to the waves, “Quiet! Be still!”Then the wind died down and it was completely calm. He said to his disciples, “Why are you so afraid? Do you still have no faith?” They were terrified and asked each other, “Who is this? Even the wind and the waves obey him!”

I haven’t doubted the presence of Jesus in our situation. But in my moments of frenzy much like the disciples I want to shake him and yell “Don’t you care if we drown?” It’s so much easier to find someone to blame for our chaos rather than acknowledge that sometimes the chaos is needed to produce growth in our faith. How can our faith grow if it isn’t challenged and tested to reveal its weaknesses.

I have attached the calm in my life to mean the presence of God. And oftentimes in the calm I feel and hear him the most!

But I have to also keep reminding myself that He is there in the storms. He is aware of the storms. And he is not surprised at all by them.

Storms are opportunities for growth in my confidence in Christ.

I still have a lot of work to do in fully trusting the Lord. But I am praying for confidence to choose Him, even when I cannot feel the presence of peace.

Sincerely,

Leah

A whole lot can change in just two weeks.

About a week and a half ago I got a call from Malachi’s back surgeon at Vanderbilt. When I answered the phone and heard the voice of the surgeon himself I felt a cold chill run down my spine. All medical mommas know that a direct call from the surgeon is often a bad thing.

H explained that he looked over the CT scans with the chief surgeon and they decided that it wasn’t safe for Malachi to have the back surgery done as planned. They are now planning to do two different spine surgeries. The first one will be in late February and they will come in through the front to put plates and screws into the lumbar portion of his spine. They will need to move his lungs for this one prompting chest tubes and a longer hospital stay. The second spine surgery will be in early April and will be done through his back to fix the thoracic (middle/upper) part of his spine. He kept reiterating that this was the safest way to handle his anatomy.

Then last weekend we got another call from Vanderbilt asking if Malachi could come for surgery on both feet on Tuesday. Thankfully we were able to rearrange our schedule and say yes. The foot surgery is the mildest on the list and one we had originally planned to pair with one hip. But now that the back surgery timeline is going to scale the course of 4ish months we figured we needed to jump at the chance to get his feet in a comfortable position.

In the meantime between the phone call and foot surgery we had planned to celebrate Levi’s 7th birthday!

This was the first year that he was extra excited about it being his birthday. He got a special Chick-Fil-a lunch at school, a few fun presents, and dinner at the hibachi grill.

Let me just take a minute and show you Malachi’s face when they brought out the drums and sang happy birthday to Levi. He was so happy.

He also got the chance to sneak over to the farm and meet the newest babies (a fox, an alpaca, and a llama).

Then over the weekend he had some school friends over for a birthday swim party, and some church friends over the next night for a November night swim party.

Saturday evening after his party ended we got the very unexpected news that my grandmother had passed away. She was 93 years old and was recovering from something viral when she very suddenly passed away.

My grandma and I were very close and she loved my boys very much. We spoke over the phone often and we made trips to Ohio to visit her as frequently as we could, surprising her just last month with a visit.

Grandma had such a spunky spirit about her and was content with a very simple life. She was always thinking of others over herself and never wanted to be a bother to anyone else. There are so many stories, so many memories that I could share with you…but they all end with the same sentiment that Grandma was a very special woman.

We made plans to travel to Ohio for her funeral at the end of the week and had to put our focus, emotions, and energy into getting Malachi through his foot surgery.

Levi was upset by the news about grandma and very anxious about Malachi and I leaving. I am so thankful for our community of support that helped keep his day as normal as it could be. He rode to school with classmates and was treated with understanding and love, which brought peace to my momma heart. Malachi’s school friends all wore red to support him on his surgery day and made dozens of cards for him to read while he recovered. We are so blessed to have found such a supportive and loving place.

Malachi and I headed to the hospital early Tuesday and checked in for surgery around lunchtime. Malachi was excited about the one on one time with mom and had such sweet smiles the night before surgery. He knew he had to do hard things, but loved the idea of us snuggling in the hospital bed and watching movies. Hospital stays have been such treasured moments for us to connect.

Malachi’s lack of oxygen at birth severely damaged several parts of his brain (Hypoxic Ischemic Encephalopathy). One of the overflow diagnoses of that is Cerebral Palsy. Some kids with CP are floppy (HYPOtonia) and some kids are tight (HYPERtonia). Malachi is a mix of both. He can’t sit unsupported or hold up his head well (hypo) but his brain has told his muscles and tendons to pull his hips out of socket and dislocate other bones (hyper). His feet are a perfect example of his hypertonia.

Malachi had a tendon on the outside of each foot that pulled so tight it dislocated his foot bones. The surgeon cut the tendons then fused the bones back in place with permanent staples. This will hopefully be a forever fix for him.

He has some pretty amazing Spider-Man casts that will stay on until December 23rd.

Malachi spent nearly four hours in the operating room and we spent the night at Vanderbilt for pain management and some oxygen support. I truly think it was a God thing for this surgery to happen the way it did as they were able to see the level of support he needed for a “minor” surgery and have now made plans to reserve a spot in the ICU for each of his spine surgeries. The surgeon also noted how much Malachi bled through this surgery and they are going to make sure to have several bags of blood on hand for transfusions for the next few.

Malachi and I made the most of our stay. I am always so proud of how he handles such big challenges. He is truly amazing.

We were discharged Wednesday afternoon and left Thursday for Ohio. Recovery has been hard for him. He managed the pain well until about the third day. We had already made the trip to Ohio and had thankfully packed several “worst case scenario” things including his oxygen concentrator which he did end up needing.

We returned from Ohio last night and he smiled for the first time since surgery. We are working to wean him back off of oxygen and get him strong enough to return to his baseline.

We got to visit with family while we were in Ohio, even getting to see my other sweet grandmother. I keep telling the boys how blessed they are to get to meet two great-grandmothers in their life! Not many kids get to do that.

Grandma’s funeral was hard for all of us. It’s always hard to put a period on the end of the sentence of someone’s life. But it led to some really precious conversations with the boys about heaven and the providence of God.

As you can imagine, I have been all over the place with my emotions. Surgery day was hard. Anytime I have to hand my child over to the surgeons it creates such a turmoil in my soul. Getting to lay eyes on them in the PACU after surgery is all I can think about and until that moment I have such unrest brewing inside of me.

I felt like this round was a dress rehearsal for all of us for the hard things we have coming up.

I didn’t give myself room to grieve or process the loss of grandma until after we left the hopsital, wanting to be able to give my focus and energy to Malachi. The closer we got to Ohio the more real the loss became.

By the end of the weekend I find myself so incredibly weak and tired. I can’t tell you how many times this week I closed my eyes and just spoke to the Lord saying “God, I am just so tired.”

As we navigated the timeline to try to get north for the funeral amidst surgery recovery unknowns I was overwhelmed with a feeling of inadequacy. I feel like an inadequate mother, caregiver, wife, friend, Christian, daughter, granddaughter. I had to miss my grandpa’s funeral due to Malachi’s brain surgery in 2013.

I don’t get to pick the hats and order them. My medical momma hat always has to be worn on top of all the others. And sometimes the relationships I am in aren’t able to withstand the “bleeding” that can take place when my current and past traumas edge into their worlds.

Sometimes I get jealous of “normal”. I got upset that I couldn’t even grieve the way everyone else does. I want to be able to drop everything and be with my extended family. But I knew this week that I had to try to put it aside until after Malachi made it through his surgery, not wanting my emotions to impact his headspace leading to the OR.

As I sat in the surgery waiting area and prayed this verse from Psalms kept coming to my mind and mouth.

“The Lord is near to the brokenhearted and saves those who are crushed in spirit.” Psalms 34:18

As I thought about those words I grew increasingly thankful for them as they perfectly summarized my state of mind. I was (and am) crushed in spirit. I just feel so beaten down right now and feel the aches with every movement.

But even as I sit in these ashes I can feel the presence of the Lord close to me. He has pointed out all of the Jesus that my grandmother showed me over the years, cultivating the Fruit of the Spirit in my life by witnessing hers.

He has been reminding me that we aren’t called to leave legacies of ourselves here on this earth. We are simply called to point others to look past us and see Him. And my grandmother did that very well.

I love you grandma and we miss you already!

Sincerely,

Leah

It has been a busy two weeks with lots of medical appointments and information. I am still processing a lot of it myself so I might not do an adequate job explaining things on here…especially the emotions we are cycling through.

The boys and I went to Vanderbilt last week for some pretty big conversations about Malachi’s spine, hips, feet, and legs. I knew we would have to have some hard conversations as we came physically see the skeletal changes the scoliosis is creating on his frame. His rib cage is no longer symmetrical, one set of ribs flaring out and sticking up dramatically higher than the other side. He is unable to lat flat on his back anymore and his body does some contorted things when we attempt to.

Last time we measure his spine curve he was at 45 degrees and we talked about surgically intervening when he was at 50 degrees. At last week’s appointment his curve measured 70 degrees which is obviously an urgent problem. Here is a side by side comparison with 2024 on the left and December 2023 on the right. He was positioned differently int he images but still…yikes!

They also took an x-ray of his hand to determine his “bone age” and he measured at 13 years old. This was a good thing as it shows he is a candidate for a spinal fusion instead of magnetic rods that grow with him. Malachi is scheduled for this surgery in February and is on the cancellation list in case they can get him in any sooner. It will be an all day surgery with three surgeons working to put screws and plates down his spine from his pelvis to T2. We will be in the hospital for several days after.

We talked to the foot/hip surgeon as well and he says Malachi is also in need of a foot surgery and surgery on both hips.

Malachi’s foot tendons are pulling so tightly that they are dislocating a joint in both feet, a cerebral palsy issue with the brain miscommunicating with the tendons and telling them to pull tighter. He needs to have both tendons released (cut) and the bone joint fused together. This will put him in double casts for 4-6 weeks.

He also needs hip surgery on both hips but due to the nature of the surgery and the inflammation he can’t do both at the same time. So he is considering doing both feet and one hip, then coming back at another time to do the opposite hip.

Malachi’s hips are both out of socket completely, which doesn’t always need surgical intervention. Unfortunately for him the head of the femur bones have migrated to the back of his bottom so he is essentially sitting on the bones, which will eventually lead to positioning problems and pressure sores.

Both surgeons met and decided the order of these surgeries based on urgency and quality of life and settled on back, feet, then hips.

All three are gnarly surgeries that are going to be so so so hard on our warrior. He will need time between each to get back to a baseline as he preps for the next one. It is going to be a very long year of back to back surgeries.

It ended up being a very long day for Malachi with lots of x-rays, CT scans, and hard conversations. I watched his face as we talked with doctors and could see the wheels turning in his head, soaking in every word. We finally got home just before midnight and Malachi and I had a chance to talk. I asked him if he was anxious and he immediately signed yes. I had to fight back my emotions as I explained that I was anxious too, but he was going to feel so much better after all this was done.

In all transparency, my heart hurts so much for Malachi. I can’t even imagine having to face one of those surgeries now, let alone as an 11 year old. He has had such a calm and beautiful few years without any major operations or emergencies so facing one again is a hard thing to accept.

My hope and prayer is that this surgery leads to a greater quality of life for Malachi and improves some of the new scary struggles he has been coping with over the last few months.

Malachi has been doing such a good job communicating lately. Yesterday he was angry and sultry most of the afternoon and it didn’t take long to figure out why.

A sweet friend invited me to do a walk with her to raise money for the American Heart Association. I presented the opportunity to both boys and let them each decide if they wanted to wake up early and do the walk with me or sleep in and hang out with Jake. Levi quickly voted to join me and Malachi quickly voted to sleep in and stay with Jake.

Walking a mile is hard on Levi’s airway so I brought his scooter. Being able to zoom on an actual road in downtown Chattanooga was a real treat.

When we got home Malachi was moody and his mood continued to sour as the night went on, clearly trying to get me to notice his annoyance with me.

Jake and Levi went to bed and I got the chance for a serious conversation with Malachi. I asked “Are you mad at me?” And he quickly signed yes. We talked for awhile and finally got to the bottom of it- he was upset that he didn’t go to the walk. I reminded him that he chose to stay home and tried to explain regret to him. After our heart to heart he gave me a big smile, seemingly grateful for “being heard”. It is conversations like these that warm my heart so much, watching him grow up right before my eyes.

Speaking of growing, the surgeon said Malachi is expected to be 4-6” taller immediately after surgery! Wild! I had to buy him some new winter clothes this week, which he was thrilled about. I may have to buy him a whole new wardrobe after surgery!

I also told him I would let him pick out a pair of shoes after his feet have healed post op. He has never been given the chance to pick out shoes as we haven’t found any compatible with his braces. The surgery will eliminate any need for foot braces! He gave mine a good smile when I told him that.

So for some fun updates.

Vanderbilt was giving away costumes the day we went for our visits so the boys each picked something out. We have had some good laughs at these.

Malachi has thoroughly enjoyed watching the NFL football games with dad, even sporting a hand me down jersey from his older cousin.

And Levi is becoming quite the animal enthusiast. Our farm friends just got some baby llamas this weekend and one other new baby (I won’t announce it until they do but it is a new animal species for the farm); we will be heading there this week for an introduction.

Levi turns 7 years old this week! Watching him transform from a medically fragile baby to a rambunctious seven year old has been such a joy. He enthusiasm each day is a wonder and his empathy for others is beautiful.

I am all emotioned out for the evening so I am going to save my Levi birthday post for the next blog entry. Momma can’t handle that one right now. What a journey these 7 years have been!

We started something new in our house this month called “My Virtuous Quest” and I am really loving the amount of conversations it has already created with the boys about virtues!! We are able to give names to behaviors if that makes sense. It’s helping me practice intentional parenting and look for things to affirm in my children.

Last week Levi’s g-tube popped in his sleep and he came in to tell me. He was very emotional about it, as he hates getting it changed out, but he stayed calm and collected enough to put a new one in so we gave him a “courage” badge. Side note- we have had to do 4 g-tube changes between both boys in 5 days…something fishy going on here with the quality of the tubes.

When they get 10 badges there are different family adventures hidden in the boxes. We also have different virtues that we can swap out and focus on based on the needs.

We are already hearing the “I was good today so I deserve a badge….” And it has been a good conversation starter about integrity and character is what we practice even when no one is looking and no reward is given. We are also working to find the conversation balance between the things that are virtues and the fruit of the Spirit.

If you need a fun gift idea for Christmas and have little ones this would be a great one!

https://www.myvirtuousquest.com/

Look at the smile on Malachi’s face with his school buddies! The friendships he is forming are so special! I am so thankful for the opportunity they are giving him to be involved this year.

It has been 11 days since our Vanderbilt trip and to be completely honest, I am still very numb. I haven’t has the chance to really accept all that I heard and think about the seriousness of what we have to face.

Spine surgery has always been an overwhelming fear of mine as we personally know children who underwent this surgery and passed away in the operating room. But I also recognize that we don’t have a choice. If we wait much longer Malachi’s lungs will start to be impacted by the spine pressure and breathing will be a struggle. I can’t imagine the fear that will stir in him, so really there is an eagerness to spare him from that and get this surgery over with.

This upcoming surgery has become a mental fixation, consuming my thoughts and energy. It is taking such conscious effort to take every through captive and make it obedient to Christ (2 Corinthians 10:5). And it is something I find myself failing at often.

When I have started to spiral into that dark place the Lord has been very gracious to me, putting the same verse in my heart as a much needed reminder.

“Come to me all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.” Matthew 11:28-30

We are facing many unknowns right now and igniting memories of times when I felt as helpless as I do now. Being a helpless mother is a hard calling to accept.

Please be in prayer for our family as we navigate some hard things over the next several months. Pray for God’s timing and will in each scenario and for Malachi to have a peace from the Lord.

Much love,

Leah

These last two weeks have been a blend of fun, mundane, and medical.

It was Levi’s turn for a field trip with his class to the apple orchard!

Levi had a very important trip to the eye doctor last week to test and quantify the damage in his optic nerves. He did not have enough oxygen support at some point during his early weeks in the hospital and has a few areas in his brain that were damaged through that struggle. The eye doctor recognized that his optic nerves also atrophied during this oxygen deprivation but we wouldn’t know the full extent until he was old enough to sit still for a specific test. In appointments leading up to this one the doctors suspected that he was losing vision in one eye and that the other nerve was significantly impacted as well.

He was finally old enough to tackle the test this week! The ideal range for the optic nerve is 100-120, and Levi’s eyes scored a 73 and a 75. There is definitely some atrophy but this it is considered mild and not enough to cause legal blindness or major visual impairment, praise the Lord!

Levi had esotropia at birth (eye misalignment) which we corrected surgically as a baby. His right eye also has amblyopia, also known as a lazy eye, so we are monitoring the vision in that eye in case the brain decides to “shut it off” and rely only on the left eye only. His eyesight is actually pretty good considering all of the drama! His glasses have a very slight prescription in one lens but also serve as eye protection for his “good” eye.

Malachi has been dealing with some minor medical issues that I won’t go into great detail about, but he has had some rough moments over the last two weeks. Cerebral palsy affects the muscles, including the intestines, which leads to a lot of belly trouble for kids like Malachi.

But he has had lots of happy moments too. Look how long those legs are! And how much he has outgrown his wheelchair! He is still thoroughly enjoying his time at school each afternoon and it has become a bright spot in his days.

We were able to find a sweet and patient local seamstress to work with us on adapting some coats for Malachi. Getting clothes on and off easily is getting more challenging. He was very excited to get a school jacket like everyone else.

We took a quick trip to Atlanta to visit with cousins and got to watch one of them in a play. Levi was so impressed and animated, loving every minute of it. It was a hard day for Malachi but he did enjoy listening to the show. He has started a new pattern of only sleeping every other night and is so sleepy by the end of the second day.

He perked up in time to paint some pumpkins with some church friends.

Levi picked some pretty flowers for mom. He has been very intentional lately about finding ways to do things for others and it has touched my heart so much.

And finally, we got to hang out with some of our farm friends at the Holy Ghost Wiener Roast! Each year the owners open their farm to the community and sponsor the entire event for free…admission, food, inflatable, games, and more as a way to steward the many gifts God has given them.

This week we have some pretty big appointments. The kids and I will travel to Nashville to meet with the surgeons about Malachi’s hips, feet, and spine. I suspect we are going to hear some hard news so we could use a lot of prayers for safety and for wisdom.

In the medical mom world there is always a list of things lingering in the background of our life, full of things I can easily pick and choose to worry about. Many of our diagnoses can’t be cured by doctors or completely resolved with medications and surgeries, so even when they aren’t a current issue they are still on the bench just waiting for their chance to make themselves known in the game again.

That requires me being vigilant, acknowledging their presence and watching for signs of new issues. But also not letting the worry consume me. And boy is that balance I often fail to find.

In Luke 9 we read: “And He sent them out to proclaim the kingdom of God and to perform healing. And He said to them, ‘Take nothing for your journey, neither a staff, nor a bag, nor bread, nor money; and do not even have two tunics apiece.’”

My sin nature is to be a control freak. To be able to come up with a solution for every problem and be prepared for every emergency, both physically and mentally.

My sin nature is to rely completely on myself…extreme in dependence. It is a coping mechanism I have unintentionally developed due to so many others letting me down in the past.

But walking with God and doing His will is not something we can ever do on our own. A Spirit led life requires complete and total reliance on Him. It requires measures of humility and submission that don’t come naturally.

Jesus’ command to the disciples allowed their faith to grow legs and trust that when you walk in the paths He asks you to walk that He will provide the things you need for that journey.

Even though I know this and understand this I still sometimes foolishly forget. And I spend my energy prepping my bags with extra bread, some spare change, and a second tunic instead of trusting in God to be present and active every step of that journey.

Tonight I heard a song I hadn’t listened to in quite awhile called
“Make Room” and the lyrics hit me a bit differently as I struggle accepting the one tunic expectation from the Lord.

Here is where I lay it down, every burden every crown

This is my surrender

Here is where I lay it down, every lie and every doubt

This is my surrender

So this week I am working on surrender. Please pray for our family as we navigate uncharted waters.

Much love,

Leah

Tonight we are wrapping up our fall break and begrudgingly getting ready for routines again.

Malachi has been getting a lot of social time in and boy does he now crave it! He is always so happy to head to school each day and is just as excited when we have soccer games in the evening. I have really enjoyed watching him making more of an effort to communicate with people he isn’t as familiar with.

Levi also finds his happy place at soccer games, floating from the soccer girls to the fans, making friends and creating laughter. One of the parents snapped this photo of him joining the team for a pre-game prayer.

One game this week he was playing with a girl that (according to him) wasn’t being kind. He came to tell me about it and I told him to find someone else to play with. He said “Mom, I think I will go be Jesus to her.” Then marched off on a mission. I smiled, then watched the encounter to see how it would go,

Malachi had his first field trip for the year at the pumpkin patch with friends. He had a hard night and was running on just a few hours to sleep. He tried his very best to have fun, and did enjoy a few hours but by lunchtime he signed that he was ready to go home. I really enjoyed getting to see him around his classmates and see all the kindness and inclusion taking place. They were very aware of where he was at all times, making efforts to include him in all the fun things.

We had plans on paper for a fun filled fall break week but as Malachi’s sleep patterns started to fade so did our plans. We did get to have a few adventures near the end of the week!

On Saturday we took a quick day trip to visit the Knoxville Zoo. I was more focused on family time than taking photos so I don’t have too many fun ones to share! And we are in that phase of 6 year old photo taking, where every single smile looks like I am behind the camera threatening him…I assure you I am not haha!

We also got the chance to visit with a sweet college friend and her family at our favorite farm! She and her family booked a stay there and texted to see if we could stop by for a visit. We are always so happy when others get to enter “our world” if that makes sense. We already know accessibility options and it makes planning so much easier.

In between the fun adventures we squeezed in several doctor appointments, therapies, and medical phone calls.

Jake and I are reading through the Bible this year doing The Bible Recap plan. We just finished the Old Testament and are headed into the New Testament! This particular plan has chunked a lot of the “synoptic” (same) gospels together so you get to read the same account/story written by several different perspectives. Sometimes they sound a lot alike and sometimes there are pretty big details added or omitted.

I have read these gospels so many times in my life, but I continue to be amazed at how many small things I have missed! Case in point…did you know that Jesus’ earthy paternal grandfather was named Jacob? I don’t know how I missed that all these years.

Anyway…

In Luke 2 there is a verse that has resonated with me since Malachi’s birth.

“But Mary treasured all these things, pondering them in her heart.” (Verse 19)

The shepherds had a visit from an angel telling them about the birth of Christ and where to find the child. That angel was joined by a host of angels praising God and giving Him the glory. The shepherds went straight to Bethlehem to find the baby and shared with Mary what the angels had said and that is what she “treasured” and “pondered”.

I have always been a little confused by this, as Mary herself had been visited by an angel and had already been told that she was favored and would birth Son of God! She even sang a song about it in Luke 1. So why was she cherishing these affirming words from strangers so much? Shouldn’t God’s promises the first time be enough?

And while I could sit back and pretend to make an argument about how weak her faith must have been or how she maybe didn’t truly believe…the truth is that I see myself and my faith a whole lot in Mary.

When I read the Word I see the providence of God play out again and again and again. I see the miraculous, the powerful, the phenomenal. I see God’s plan being played out exactly as He intended it. I see prophecies come true and faith ignite in so many different characters.

I KNOW the truth in a cognitive sense. But sometimes my heart doesn’t follow my head and doubt creeps in with discouragement close on its heels.

I told Jake yesterday that my faith is tired. I don’t doubt who God is and I am not angry with Him. But I am just so tired.

And when I look at Mary I wonder if she sometimes experienced the same weariness. The calling that she was given likely came with a lot of ridicule as an unwed mother. A lot of uncertainty, giving birth to the Son of God in a stable. I suspect that Mary’s calling was a lot harder than she ever imagined it would be when the angel Gabriel made that first visit to her.

I am in rambling mode right now, trying to decipher why I typed all that I did just now.

But I think the encouragement for me this week is that God is the God who sees me (El Roi). And I believe that God knew that Mary needed those precious words from the shepherds in that very moment to remind her that He is good and very much still at work.

And tonight I find myself thankful for a God that sees us in our weakest moments and gives His presence in abundance. I am thankful that He gives us moments to treasure and ponder…moments that remind us of our encounters and conversations with Him. What a good God He is!

Much love,

Leah

October is almost here and it is my absolute favorite month. The visible change on the trees always reminds me of how creative God is! There is a line in Anne of Green Gables that I always think of: “I’m so glad I live in a world where there are Octobers.”

The weather drama tends to slow down in October and Malachi just seems to level out. He has a VP shunt and barometric pressures can really affect him. We have several big appointments in October this year- Levi’s eye test and appointment, Malachi’s spine and orthopedic appointments, and a few other biggies.

Both boys are doing well with their schooling. Levi had a handwriting test last week that he worked so hard on so we celebrated big time. Those fine motor tasks are such a challenge for him. We don’t aim for perfection but just HIS best.

And Malachi is still loving spending a few hours each day with his friends…and getting a break from his mom.

Malachi’s cold from the first week of September continued to linger in his lungs so we started an antibiotic to kill any bacteria that might be sticking around. We also have continued breathing treatments and respiratory regiments to keep it from turning into pneumonia but thankfully he hasn’t needed any supplemental oxygen since our last post.

Mom guilt is a tricky thing. And I would venture to say a little bit more complex for a family like ours as equality isn’t really every something we can truly offer.

As Levi grows I find myself eager to find adventures that align with his interests and be a little more bold and ambitious. When Malachi was younger I was much more hesitant to enter new places, partly because of his compromised immune system. I was thinking back to when Malachi was 6 years old, like Levi is now, and that was when Levi joined our family and we were displaced at the hospital in Cincinnati for nearly 5 months. Then when we came home we were dealing with a new world of oxygen and feeding pumps, limiting my boldness as a mom even more.

When I reflect on my eagerness to give Levi fun memories right now I find myself feeling bits of shame that I didn’t try harder for Malachi when he was this age. I remember mild attempts, like the Harlem Globetrotters, but we were new into the medical world and many of our attempts overstimulated him and set him into massive seizures.

Two weekends ago we booked tickets to Disney On Ice and successfully kept it a surprise until the car ride there- something that is oddly hard to do with nosey Levi.

Levi loved the show, eagerly sitting on the edge of his seat and watching with imagination. I narrated the show to Malachi and he just sat and listened, unamused and frankly bored. When I asked him if he liked the show he signed a very half-hearted yes and did so in a way that I knew he was simply trying to not hurt my feelings (sweet boy).

I started wondering….did I miss it? Did I miss that precious age with Malachi where imaginations can run wild?

Entering the scene: mom guilt.

Now logical Leah can sit and explain that his tastes have changed. That we were doing what we thought was in his best interest at the time. Etc, etc, etc.

But illogical Leah says that I just didn’t try hard enough. And that time is running out. The imagination is still there and running strong. So how do I unlock that?

And the realistic Leah recognizes that my ability to continue to help Malachi physically experience certain parts of this world is dwindling. He is now 55 pounds and talking people into letting him try things is getting more and more difficult, mostly being told no due to liabilities.

The boys had two days off this week and I decided that I was going to find a knock-it-out-of-the-park home run of an idea that both boys would love. I went through the classics and just couldn’t seem to be content with recycling things we have already done.

And then I found it…the golden idea that both boys would love. Close to our hometown in Ohio there is a massive Renaissance Festival that takes place each fall. Jousting, falconry, knife throwing, horses, knights, games, rides. This particular one offers 100 shows each day! I planned out our itinerary for the show and then started packing bags.

I tried to think of all the potential emergencies and plan for them. We packed oxygen concentrator, breathing machine, CPT machine, cannulas, pulse ox, and so many more devices that would stay in our car just in case it was needed. Then the meds, supplies and diapers that we use on a daily basis.

I broke the news to the boys about our special surprise trip and they were both giddy with excitement. Unfortunately Jake had to stay in Tennessee for work. We made it to Ohio just in time for the overflow weather from the hurricane to hit. The forecast looked awful for an outdoor festival but at this point I was invested and determined to make it happen for Malachi.

We woke up the day of the festival and we grabbed our rain boots and rain coats and picked up my little brother who wanted to also join in on the fun. We made it all the way out to the entrance only to find out that the power had gone out and the festival was suddenly closed for the day.

I now had three very disappointed kids in the car so I declared it “Spectacular Saturday” and made it a yes day for them. We played arcades, mastered laser mazes, rocked some laser tag rounds, ate sandwiches and so many more fun things.

Later that evening I asked Malachi if we should try to do the festival the next day right before we had to leave town and he flashed the quickest grin. His little heart was just so set on it.

So we made plans to try again but unfortunately the power still had not returned to the festival Sunday morning so we made the trip back to Tennessee.

We didn’t get to do our big adventure but we still made some memories. Obviously Malachi was disappointed but after a few grumpy hours he moved on. And he was able to finish a few books on the drive, including “The Lion, the Witch, and the Wardrobe” which made him happy.

And to be truthful, I really enjoyed the book as well. There were so many things I spotted as an adult that just meant something different from when I was a child.

One particular line that caught my ear was about one of the main characters named Peter.

“Peter did not feel very brave; indeed, he felt he was going to be sick. But that made no difference to what he had to do.”

Wow did that line hit me hard.

Being in Ohio is difficult for me. There are so many memories there, both from my childhood and my time in the hospital with Levi. It seems that every road I pass brings up some buried memory- sometimes good and sometimes bad.

I struggled very much this trip with trauma. And what is so intriguing to me is that trauma is so ingrained that it can overtake your body and mind without any effort or consciousness at all.

I was zoned out, focusing on the road, and I suddenly felt sick to my stomach. It came on so quickly and aggressively that it caught me off guard and I started to look around to find the origin. At that very moment I was passing a exit we used to often take when Levi was in the ICU in Cincinnati. I was on a road we hadn’t really traveled since then and my mind kept the score.

2 Corinthians 10:4-5

“The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds. We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.”

This weekend reminded me of many strongholds that still exists in my walk with Christ- things that tend to take my focus away from Him. Taking every thought captive is an exhausting process but absolutely necessary for keeping focused on Him.

Levi is a very sensitive 6 year old so Malachi and I have been listening to the more mature content books when he is away or sleeping. We made it to the final chapters of the book where Aslan the lion goes to war against the witch and Levi woke up.

I looked in my mirror at Malachi who was on the edge of his seat with excitement, eager to hear what happened next. And Levi asked what the story was about so I decided to give him a quick summary to catch him up so we could continue the final chapters.

I explained that Edmund had made some bad choices and the penalty was death. But Aslan the lion took his place to save Edmund. As I talked through the details of this I found myself getting very emotional, touched by the parallels of what Christ did for us. The similarities in the story were not lost on Levi and he said “Just like Jesus died for us!”

And the three of us listened to the hard parts of that story together, knowing that something even greater was coming.

Sincerely,

Leah

After a long two weeks our family is finally all healthy, well, and off of oxygen. Jake’s cold from two weeks ago made it through the family, hitting everyone except for Levi. There is no explanation other than God as to why Levi didn’t get it!

I know it sounds odd but it is helpful when I get the sickness before Malachi so I can gauge a timeline of symptoms and how difficult it will be on his system. When you are raising a non-verbal child each day is like a mystery, trying to collect clues and fill in the wordless gaps as best as possible.

There was a 24 hour chunk between the photo above and the photo below. Malachi started to shut down as the symptoms came on, slowing his breathing down to dangerous levels. As soon as his oxygen dropped we started supplemental oxygen and his breathing treatment regiment: nebulizer, cough assist, CPT (shaky) vest. We also kept Motrin on board regularly to keep him comfortable.

Malachi’s cerebral palsy, specifically his low tone, makes it hard for him to clear his airways. He was pretty miserable but still had a great attitude. We canceled his in-person appointments for the week and focused on resting and healing.

This weekend we were able to wean him back of oxygen safely and we are back into our normal routines! I am so incredibly thankful that we have been given access to all of his home equipment. We can run the equivalent of a regular hospital room here at the house, allowing us to stay home during illnesses like this one.

Prior to having these home machines we would have to be admitted with every respiratory illness, often staying for weeks while we waiting on him to be strong enough to get discharged. I can think back to the dozens of times we have just sat in the hospital, trying to overcome a common cold and being exposed to much worse illnesses in the process.

I am increasingly thankful for the relationships and the trust we have been able to develop with his specialists! Home is the best place for him to heal and for us to truly watch for his baseline without other factors added in.

Malachi got off of his oxygen just in time for us to attend the Make-a-Wish night at the Red Wolves soccer game in Chattanooga this weekend. Attending sports events is one of his favorite things to do. He loves the crowd drama, the chaos, and having the game narrated play by play. You can tell when he is intently listening by his eyes…I took a few pictures so you could see his engagement as Jake narrated for him.

On a side note- a shameless plug here….Malachi and Jake love to watch the Bengals games together when they are televised here in Tennessee. If any of our Ohio friends ever have access to some discounted Bengals tickets send me a message! It would be such a treat/memory for them to attend a game in person together. I would video them watching a game to share it with you but Jake might be too embarrassed by his intensity haha. Malachi shouts, laughs, and screams with joy too.

Anyway, back to the Red Wolves…

We kept the game a secret from the boys just in case Malachi wasn’t stable enough for us to go. So when we finally told them where we were going as we drove there Levi was ecstatic. He loves our family adventures, and even more when they are a surprise.

The Red Wolves is not the most accessible arena, so the only way to watch the game from inside the stadium is going through the Executive Suite, which has unlimited drinks, cookies, and hot dogs- Levi’s love language. The Red Wolves have always been so kind when we attend games to make sure Malachi can be included in the fun!

The night ended with fireworks over the stadium. It was a special night and a much needed adventure after several weeks of staying home and healing.

Prior to sick week(s) the boys had some great school days. Malachi is still coming out of his shell and we have been so happy and thankful with the huge progress Levi is making.

This week I wore many hats as mom, nurse, respiratory therapist, etc. I am not trained for a single one of those roles so we figure it out as we go, using observations I have gathered over the years from our many stays.

One particular night this week Malachi seemed very stable and strong so I tried turning his oxygen down a tiny bit. He handled the change for a few minutes, then started to dip his saturations into the dangerous stage again so I turned him back up.

As I was contemplating what to do next I thought back to the last time we were in the ICU. Malachi had a hard time bouncing back from a respiratory illness and needed high flow oxygen to help push the carbon dioxide out of his system. He started at 20 liters which is crazy high.

It took several days for us to wean him down from such a high liter. He handled the wean process well until we got down into the lower liters. I remember the respiratory therapists coming in and turning him down a liter and leaving the room. Malachi handled the change decently for a few minutes, then dropped down into the low range and struggled to breathe. My momma heart panicked and called them back in to re-evaluate if he was handling the wean safely and they reassured me that this was the only way to truly test his respiratory system. If we didn’t challenge it by decreasing the flow we wouldn’t truly know when he was ready to come off of it.

Malachi’s numbers would dip low for awhile, but as he continued to work on his breathing at the lower liter amount he would steadily find his breathing pattern and his body would settle into the change.

This process continued, as did the struggle moments in between each wean. I didn’t want to watch him struggle. I wanted to see his chest move up and down with ease. And when things were hard I wanted to rescue him. But his body needed to feel the struggle and overcome it.

This week as I cared for Malachi I kept flashing back to those uncomfortable moments for me bedside, watching him struggle through the wean process. I can still feel the panic bubble up in my belly just thinking about it.

But the more I thought about the process the more I recognized its necessity.

As I read through the Word this week I couldn’t get this process out of my mind. The process of removing the comfortable and exchanging it for the struggle with the desire for growth.

I thought about the many emergencies and moments that have happened in our lives where our comfortable was very drastically removed. And like Malachi, I sustained the transition on my own for a very short time only to realize that something had to change.

The struggle had the ability to strengthen me through leaning into the Lord’s strength or break me by relying on my own.

Faith is a choice. It isn’t a one time choice, or a moment of salvation. It is an every second of every day decision to pursue, obey, honor, and submit to God.

These trials that we face are an opportunity for our faith to grow legs and learn to walk through new waters. Like Jesus healing the lame, we are able to miraculously be given the strength and ability to walk into into the roles God has called us into. Even the hard ones.

Romans 5:3-5 “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does it put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Tonight I am thankful for the Holy Spirit that has been poured into my heart by God. I am thankful that He trusts me enough to wean me off of the comfortable and patient with me as I struggle a bit and realize that I cannot do things apart from Him. I am thankful that God has armed me with the weapon of faith as he calls me to battlefields that I am not prepared to enter.

What a treasure a walk with the Lord is. And what peace it brings in the midst of chaos.

Thank you for your prayers last week over our family.

Leah

We are now a few weeks into the school year and both boys have been settling into their new routines. Academic work is a real struggle for Levi, but watching him develop a work ethic and try hard has made me proud!

I laughed out loud looking at those last two photos of Malachi. His legs have grown so incredibly long and he doesn’t easily bend at his knees. I think he is going to outgrow this wheelchair sooner rather than later.

We have successfully been able to get Malachi’s bedtime from 3am to 1:30am and all meds have titrated to more reasonable schedules.

Malachi has been very quiet at school still and tells me he is “embarrassed” when they they are helping him use his instruments or when he is the focal point of anything. Seeing him so quiet and reserved has been such a surprise for me. Every day I am encouraging him on the way to school to be himself but he is still holding back.

Late last week I watched him sign successfully with his teacher and it brought me to tears. I love seeing him work towards some independence. How empowering it must feel! I keep asking him if I need to come to class with him to help him be himself and he is very quick to sign no. Not cool, mom. Not cool.

Last week a student came up to Malachi and asked innocently “What’s wrong with him?” Malachi pursed his lips, clearly offended and unamused by the comment. As the teacher softly corrected the student I leaned down and explained to Malachi that he had likely not seen a child in a wheelchair before and that we needed to give him some grace on his wording.

Later that evening I was recapping the conversation with Jake and Malachi and apparently Levi was listening in. The next day at school he went up to the boy and indignantly said “You hurt my brother’s feelings!”

If I am being honest, seeing Levi stand up for Malachi touched me deeply. Their relationship continues to grow in so many beautiful ways.

During our homeschool hours Malachi is finishing several chapter books each week and doing great! Levi is also working hard at home on his virtual schoolwork and is discovering a new love for Malachi’s audiobooks. He wakes up talking about where we left off in the story.

We have been blessed with a stretch of “simply routine”. Routine appointments, therapies, issues, etc. But there is always an undercurrent of potential emergencies that dances in the background of my mind.

One of the hardest parts of being a medical mom is knowing when to react and when to wait and see. There is a delicate line there. There are certain rules that I have made up in my mind for when I take them into the hospital when they are sick but sometimes issues pop up that could potentially be a big deal. I know when we mention them to providers it is going to lead to a frenzy of panic, imaging, tests, and appointments. Which is often warranted. But knowing that it will lead to chaos makes me really sit and process to make sure it is necessary at that stage or if it should wait.

We had one such issue last week with Malachi. He has grown a lot over the last few months and I have been watching his rib cage slowly become less symmetrical. Both of his hips are dislocated and Malachi has significant scoliosis so there never really is an ideal shape, but it has definitely become more prominent.

We were scheduled to see the orthopedic and spine surgeons in a few weeks and they just rescheduled that appointment to late October. I sent them images of the rib cage changes over email and mentioned it to Malachi’s physical therapist. She was very alarmed and sent us for X-rays immediately.

In the meantime, Vanderbilt surgeons wrote back and assured me that we can wait until his appointment in late October to make the plan but it looks like his scoliosis has progressed to the point of needing spine surgery. This is a big deal and something we have been dreading, but if left untreated it can lead to lung restriction and him not being able to breathe.

This first image shows his scoliosis in 2021. Not too bad (in context).

This next image was taken last week and is obviously pretty bad. Our criteria for surgery was a 50 degree curvature and he was at 45 degrees last October (35 the year before that). I am already dreading that October appointment and bracing for the hard conversations that will have to take place.

Malachi isn’t indicating that he is in pain, and in fact giggled during his X-rays, clearly loving the attention from the pretty techs.

Between schoolwork, therapies, appointments, and soccer we are definitely sleeping hard each night!

The dogs don’t sleep with Levi but they go in to tuck him in each night. He loves them so much!

I am still adjusting to all the recent schedule and life changes. The thing I didn’t account for was how physically sore I would be from taking care of Malachi solo after a summer of having Jake around to help. He is growing and lifting him is getting more complicated. And the mental fog that comes from a lack of sleep and in increase in responsibilities.

Last week I shared a portion of an interview with you from Martin Pistorius. I have been reading his book, Ghost Boy, over the last few weeks and what an eye opener it has been! I highly recommend it to all parents, friends, caregivers, and family members to someone who is nonverbal. Trigger warning- there are some really hard parts to read in this book that talk about abuses he suffered.

Martin was very much like Malachi for years, trapped inside his own body with no way to communicate. He writes about the things he observed about his own parents and I have shed so many tears reading through his perspective.

He wrote a sentence about his father (his primary caregiver) at the very end of one of those chapters and it felt like I was looking in a mirror.

“While I can’t be sure, I sometimes wonder if all these lost hopes and dreams are the reason why a man as intelligent as my father has learned to hide his emotions so deeply that I sometimes wonder if he knows where they are anymore.”

This deep thought made me gasp as it describes something I really struggle with. And I would venture to say that most medically complex moms also deal with this same struggle.

We are required to keep tight reins on our emotions. That sometimes appears like we are being arrogant, fake, and closed off but in fact that is a coping mechanism we have developed to compartmentalize our grief. I am not advocating for his, nor am I claiming that this is a healthy practice. It is not something I set out to do or glamorize.

But it has become a part of our caregiving/parenting (my primary identity right now aside from Christ follower of course) and therefore overflows into my friendships and other relationships. Our children have hearts that beat in tune with ours. My emotions flow directly into Malachi and he often matches them. He is so in tune with my emotions that I have to work very hard to regulate myself, even in life or death emergencies, to be a source of strength and comfort for him. So I have learned to stuff those emotions deep down and process them when I am alone, which is very rare.

“…I sometimes wonder if he knows where they are anymore.”

That was the line that made me really consider if I even know how to find those unhindered emotions anymore. To “feel” the way that everyone else does. After 11 years of learning how to cope with the hard I find myself no longer knowing what normal looks like.

This makes friendships hard. I feel like an alien in “normal” friendships- recognizing that I am not doing it right but not quite sure what right looks like.

Special needs parenting changes you. It is a form of trauma. It is a world of joy & grief, wins & losses, temporary & permanent. It is an isolating world with a language that not many can speak.

I am thankful that I belong to a God who truly knows me. He knows my motivations, my inner thoughts, my deep pains, and my insecurities. He doesn’t affirm them, but instead He refines and purifies me from them. I am so thankful that I am not my own.

Psalm 16:1-2 “Preserve me, O God, for I take refuge in You. I said to the Lord, ‘I have no good besides You.’”

This week I am reminded to seek refuge in Him and not in the dark closets I like to retreat in to allow myself to “feel”. To take all of my failures and fears and lay them down at His feet in surrender. And to trust that this cup He has placed in my hand is overflowing with strength, wisdom, and God’s sovereignty.

Please keep us in your prayers this week as Jake started the symptoms of sickness this evening. It is a matter of time before it hits the boys and usually a common cold will put Malachi back on supplemental oxygen for a few weeks. And lead to Levi’s airway swelling and lots of vomiting from his gag reflex. Join me in praying against all germs!

Sincerely,

Leah

School has started and our house has been a busy buzz of transition.

Jake teaches at our local high school, teaching Geometry, Dual Enrollment (college algebra, trigonometry, statistics, geometry) with the local community college, and a Technical Calculations math class. This is year 16 for him!

Levi and Malachi are each doing a hybrid style this year. Levi is enrolled in virtual public school and attends in person classes at a local Christian school. School does not come easy for Levi and we are navigating exactly what his his needs are and how to address them to allow him to be successful. The biggest challenge for him right now is his fine motor skills and he struggles to write. This struggle affects several facets of his education and he can get a little frustrated in the classroom.

He hasn’t had the smoothest start to his school year, shedding tears over being away from mom (a struggle every year after his surgeries). He has been an anxious mess so we can definitely use the prayers for a peace to come over him.

Malachi is officially a 6th grader, homeschooling with me this year and attending the same local Christian school each afternoon for specials with his peers. He is in choir, band, PE, handbells, and storytime. This is the first time this school has enrolled someone with higher level needs so we have an agreement that I stay on site while he is there.

Malachi’s excitement was off the charts leading up to his first day. As we drove over he grew very quiet and when I asked if he was a little nervous he signed yes. I dropped him off and as I watched him switch classes, surrounded by his peers, I became overwhelmed with emotions. I snapped this photo when Jake asked him how his first day went.

We have done formal school before with Malachi and his teachers were amazing. But he was isolated in a room with other students with disabilities all day- there wasn’t a true inclusion model. Malachi’s cognitive skills are that of an 11 year old and the older he got the more I desired for him to be immersed in the world and content of his age group.

Malachi is non-verbal but has so many thought and opinions. I do my best trying to “hear” him but sometimes I struggle with these big decisions. I try to put myself in his situation and think about what I would like if I were an 11 year old again and make decisions accordingly.

I have shared this before, but I read an interview several years ago that really resonated with me. The article introduced a man named Martin Pistorius; when Martin was a 12 year old he developed a severe sickness that rapidly deteriorated his health and mental condition and he fell into a vegetative state.

Several years into this illness Martin’s mind began to “wake up” but no one around him knew because he was unable to communicate. By age 19 he was aware of everything around him but still no one knew.

“However much I tried to beg and plead, shout and scream, I couldn’t make them notice me.”

Martin’s first impulse was to turn off his thoughts, since he saw no point in having them in the first place.

“You don’t really think about anything,” Martin said. “You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish. It was terrifying at times. What really got to me was the complete and utter powerlessness. Every single aspect of your life is controlled and determined by someone else. They decide who you are, what you eat, whether you sit or lie down, in what positions you lie in, everything.”

One of his caregivers noticed that he could use his eyes to respond to her words and doctors sent him for testing which confirmed that he was conscious and aware of his surroundings.

In his late 20s Martin learned to use a computer and went on to graduate college with a degree in computer science and started his own web design company.

Martin went on to write a book called “Ghost Boy” about his experience of being trapped inside of his own body. Martin’s story has impacted me greatly and his perspective is such a gift for moms like me.

It has made me protective over his experiences and the people I allow him to be around, making sure that there is a respect there for the person that Malachi is, not the person we think him to be.

Last week I was walking through Home Depot with the boys and a stranger approached me and said “I am so proud of you for bringing him out in public. Most moms would keep him at home, away from the world. But the world needs to see kids like him.”

I had very mixed emotions in that moment, recognizing that her intent was to encourage me. But I also quickly filtered those words through the ears of my 11 year old son and when I did that they stung a little bit.

Our society has made such amazing progress in the last few decades in regard to individuals with disabilities. But we still have so much to learn on making this world a more inclusive place for all!

Back to life updates…

Our soccer season has launched! All four of us thoroughly enjoy this time of year.

Adjusting to new schedules is a little complex for our crew. I have been titrating medications, trying to get both boys on a reasonable med schedule so Levi doesn’t have to have meds administered while at school (something that he is embarrassed about this year).

Then there is the sleep schedule struggles. Levi has adapted pretty well to going to bed early, but Malachi locked in to 3am bedtimes all last week. Levi’s feeding pump has to be turned off at 6am and we have to be up by 7. We are running on fumes most days but I am hoping for progress this week.

In order to get Malachi ready to be out of my reach/interventions during the school day we have started all of his respiratory regiments back- nebulizer treatments, cough assist machine, and shaky vest before he gets his morning feeds and medications. The process to get him “safe” to be at school takes a little over two hours right now. It all has to be done in a very particular order to keep him from vomiting up his meds and feeds during the process. I am sure this routine will get easier but the thinking and timing required right now in my very tired momma brain has been a lot!

He is also entering teenager land and needs to have showers at least every other day. He has never been able to sweat, but that is changing and if we don’t keep hygiene on the top of the priority list he gets some pretty intense acne. Showers for Malachi are a process all on their own!

This week I started gathering some stacks of things to take to Goodwill and opened up those boxes I have continually ignored for the last several years. As I sorted through the items one by one I reached the bottom of the box and pulled out a pair of tiny shoes.

I bought these tiny shoes shortly after I found out I was pregnant with Malachi. As soon as the test read positive I knew in my heart that it was a boy and his name would be Malachi, “God’s Messenger”. I went to a consignment sale to purchase some clothing for my nephew and spotted this tiny little pair of shoes and they were my very first mom purchase.

We later used these shoes in my pregnancy announcement photo and he came very unexpectedly just a few weeks later.

As I looked at these shoes again this week I couldn’t help but feel a mix of emotions. I had the sentimental “awwwww” moment that most moms get looking through baby items. I had a laughter moment, realizing that we never actually put Malachi in these shoes. And that was following by the deep pang of sadness as I processed the grief in the layers our journey. These simple shoes represent so many things in my heart.

I put them aside to donate them. Each day I walked by them I visited a different emotion. Each day as I processed each new emotion I watched the Lord speak quietly to my heart.

Psalm 40:1-6 “I waited patiently for the Lord; And He inclined to me and heard my cry. He brought me up out of the pit of destruction, out of the miry clay, and He set my feet upon a rock making my footsteps firm. He put a new song in my mouth, a song of praise to our God; many will see and fear and will trust in the Lord. How blessed is the man who has made the Lord his trust, and has not turned to the proud, nor to those who lapse into falsehood. Many, O Lord my God, are the wonders which You have done, and Your thoughts toward us; there is none to compare with You. If I would declare and speak of them, they would be too numerous to count.”

The Lord replaced the story I had written for one of His own. And getting to unfold this story day by day for the last 11 years has deepened my love for the Father and His mysterious ways.

If I would declare and speak of them, they would be too numerous to count.

Those tiny shoes have served as a reminder to me that God’s is able to do immeasurably more than all we ask or imagine (Ephesians 3:20) and to trust that His plans for our lives are far bigger than our own.

I might have to hang onto them a little while longer.

Much love,

Leah