The leaves are changing here in Tennessee and I find myself thanking God multiple times a day for the beauty of Octobers.

Our soccer season has ended, and our family takes a brief break each year from soccer seasons until January. We have re-started our family game nights, cooking more meals, and a new book series with the boys at night. Our family truly enjoys coaching soccer, but slowing down is always a gift.

Malachi had some pretty big appointments last week. We were able to have a productive conversation with his Urologist and come up with a plan for his urinary retention issues since the medications are not working.

In the next few weeks he will head to the operating room to start Botox injections in the urethral sphincter, the muscle that controls the release of urine from the bladder. He will have to repeat this procedure under general anesthesia every 3-6 months indefinitely.

Jake and I are honestly a little discouraged by this treatment plan. We have always avoided treatment plans that require him going under every few months. But doing nothing will lead to kidney failure so we are walking forward in faith and hoping this works. If it does not we will need to start considering catheterizations which can come with complications and lifestyle changes for Malachi.

We ended up canceling his MRI as his seizures leveled out when his body adjusted to the new medications. There seemed to be a little miscommunication between Neurosurgery and Neurology regarding the type of imaging and whether or not the machine was safe with his new back hardware. I was a bit anxious with all the back and forth and felt like we were stable enough to cancel it.

I meet with the Psychologist who tested Levi in the morning to discuss his results and I am very curious what she will have to share. Labels and diagnoses don’t bother our family. Each of our children are a puzzle and each time we get another piece it helps us organize the best path for them.

Levi is thriving in school and his history and science recall is so impressive! He is a hard worker and we are so proud of how well he is learning to love others.

The monkeys absolutely love him- we suspect they see him as one of them and play with him like he is a blonde headed monkey.

And Malachi is very entertained by all the monkey madness.

Each year our friend open their farm to the community for their annual “Holy Ghost Wiener Roast”. This event, all food, and all activities are offered for free and we partner with a local church to help bring the Gospel to the forefront of the event. The first year we just invited our youth group and had about 75 teens. The next year we asked the youth to bring friends and family and had 300 come out. The third year we opened it up to the community and our numbers have continued to grow each year. Last Saturday we had over 1,750 people on the farm!! So wild and so much fun!

This weekend the time changed. This can be a little tricky for medically complex families as we lean heavily on routines and medication schedules. There is a little wiggle room with med administration by an hour or so but we try to keep things as smooth as possible when the clocks change.

Today as I went through our routine I caught myself wondering if other parents have to be as time aware as we are.

While each day is very different than the last, here are the constants we have to keep track of on a healthy day….this may be absolutely boring to you but it gives you a glimpse into our medical world.

8:00am Levi medications round #1

8:15am Diaper Change #1

8:30am Malachi medications round #1 with g-tube feed

9:00am Malachi breathing treatment

9:15am Malachi Airway Clearance System CPT Vest

9:30am Cough Assist Machine

(Above breathing regiment is repeated up to 3x per day when needed)

10:30am Malachi medications round #2

11:15am Diaper Change #2; g-tube feed

3:15pm Diaper Change #3; g-tube feed

7:15 Diaper Change #4

8:00pm Levi medications #2

8:30pm Malachi medications round #3; g-tube feed

9:30pm Hook up and start Levi’s g-tube nighttime feed

10:30pm Malachi medications round #4

11:15pm Diaper Change #5; g-tube feed

11:30pm Stop and unhook Levi’s g-tube nighttime feed

In addition to this, we give Malachi water through his g-tube at least 4 times a day and vent him dozens of times, letting any trapped air out of his belly.

Levi sleeps from 9p-7a and Malachi varies but right now he sleeps from 2a-8a. Each day tends to float into the next and the mental energy it takes to stay on schedule can be overwhelming. Especially on appointment days when we don’t have our home base to work out of. Leaving the house requires significant planning and thinking through worst case scenarios. And traveling overnight anywhere….whew….it is a whole lot of packing and planning.

But for us, this has become normal and just a part of life. I feel like I could draw up meds correctly with my eyes shut haha! Right now I administer 23 different doses of medications each day- cleaning the syringes is it’s own job.

This life definitely doesn’t match the visions of motherhood I had as a girl, but it does carry so much beauty in it.

This weekend we had the opportunity to speak to a local youth group, and as I prepared for what the Lord wanted me to share it reignited such a love I have for sharing our story and God’s role in it to others. We aren’t perfect and we most definitely have not displayed God’s character in every chapter of our story, but the lessons we have learned in each leg of the journey have been so life changing.

As I prayed about what to share with these teens specifically I started digging deep into my past, asking myself what is something teenager Leah needed to hear at that age. And comically enough, it is the same thing adult Leah sometimes needs to hear these days.

I saw an object lesson at a women’s conference that really stuck with me that involved paint samples. The more I thought about the visual the more it resonated with me.

This weekend I had 5 teens come up front and handed each of them a paint sample from the hardware store. They had to secretly look at their sample and decide what color it was; on the count of three each person had to say their color out loud. What they didn’t know was that every sample was white, and even had the word “white” in its name.

As you can see, every single one is a different “shade” of white.

I talked about faith and how, too often, we look to other Christians to determine what faith looks like. We find people in our world that we admire and use them as our standard of Christ. But even the greatest Christian is still an imperfect version of the perfect nature of God. The “Ultra White” sample represents God’s perfect holiness….and a visual of how far off even our best imitations can be.

It isn’t wrong to admire others, but it is important that we KNOW the true God and His character firsthand.

In my life my biggest wounds have come from other sisters-in-Christ. And I am sure that I have been a source of pain for others, as we all have moments where we allow our sin nature to overshadow our reflection of Him. When we do things “in the name of Christ” and allow our flesh to be involved we can do so much damage to our witness.

It is vital that we be “washed in the Word” (Ephesians 5:26) and have eyes that can spot when our feet need to be cleaned (John 13:5-10).

It is always a blessing getting the chance to share with groups. And the opportunity for self-reflection with the Holy Spirit is always a refining experience.

Well, according to my handy schedule typed above, it is time for me to get Malachi to bed! Thank you for listening to my updates and allowing me to ramble. Having a safe space to process and unload my brain is something I do not take for granted, and I am thankful that we have a support system that cares enough to check in on our family.

Sincerely,

Leah

It has been an up and down few weeks as we continue to navigate medication changes with Malachi. We will follow up this week with his urologist and also do an MRI to check his shunt, but the seizure clusters have been slowing down a bit and he has been more mentally clear over the last week.

The boys had fall break last week (Jake’s was the week before) and we spent most of it at the farm. Georgie the monkey learned how to push Malachi’s wheelchair, much to his amusement. And a sweet new baby zebra was born on the farm.

It truly is Malachi’s happy place. And Levi just doesn’t realize yet what a special privilege it is to play with exotic animals anytime he wants to.

Levi had some testing done last week to test for dyslexia as well as some other academic things. He did great on the first portion but then we took a break for lunch, hoping that would help break up the session. Unfortunately it seemed to have the opposite effect and he wasn’t able to focus well on part 2. We will find out the results soon and go from there.

We celebrated test day/Fall Break with a trip to Chuck-e-Cheese. This was Levi’s first time and his excitement was so cute to see. And Malachi got a case of the giggles, thoroughly enjoying the competition in the arcades.

We are still in the middle of some pretty big battles right now, with health issues and insurance being at the top but several smaller battles ready on deck. With the boys back at school this week I will have my parking lot work hours back, three hours each day to sit at the boy’s school and do remote work from my car.

Last night I went down to the filing cabinet to dig out some paperwork and I stumbled across some things from high school. As I looked through these old pieces it felt like I was looking through a different person’s life. I laughed at the carefree things in that file- a girl with such simple dreams and priorities. And I grieved over the relationships lost and the unmet expectations of that young girl.

Next I found file folders with all of the medical records from the night each boy was born. I took a moment to read through a few pages and the memories started to flood in. Tiny little ink footprints on pages- attempts from the nurses to create normalcy in such a foreign and dark world.

As the night went on I was gripped with such a sense of loneliness, living a life that is unrelatable to others. I have a file cabinet full of chapters of a story I haven’t written but am a main character in.

I closed the file cabinet and went back upstairs to medicate Malachi. And as the night went on that pang of loneliness grew inside of me and I could feel an emotional breakdown coming on. So I leaned into it and let myself have a moment to mourn.

Malachi stayed up late last night and as I scrolled on my phone I stumbled upon a blog post from 4 years ago that was such a needed reminder. Maybe this post from the past will speak to your heart as well.

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October 19, 2021

On Thursday and Friday Malachi spent a few hours at school at his request. Levi and I went into town and ran errands while we waited to pick him up and I tried to catch up on all the things that are exceptionally hard to do with a wheelchair and another toddler in tow.

Simply getting Levi out of the car and carrying him into a store in under 30 seconds was such a unique experience. I just felt so…normal. As we wheeled down the aisle with Levi in the cart I had people make eye contact with me and stop to interact with Levi. They complimented his hair, asked him his age, and smiled with their face and their eyes. I know that sounds like an odd thing to mention but special needs moms rarely get eye contact from strangers. We get awkward shuffles out of the way and we get lots of well meaning comments (“Wow you have your hands full!” or ”God gives special children to special people.” etc)

The anonymity I felt this week as just a typical mom was really refreshing- but then when I realized it was refreshing I felt a pang of guilt as if I were cheating on my special needs momma self. I love my unique motherhood journey and I have accepted the role that God has placed me in, but the social encounters this week really made me think.

I have been thinking specifically about relationships and how isolating our world can get. We have a wonderful community support system but sometimes it feels like we have worn out our welcome and we tend to see friends slowly start to drift away. Friendship with our family is a lot of work and we tend to ”bleed” onto those around us without intentionally doing so. I know this potential for friendship destruction exists so I catch myself trying to bubble wrap my friendships and not let always see the hard parts of our lives. I shield them away for fear of losing another friend, but in turn that leads to a superficial friendship that doesn’t last.

The psychology of rejection is something that has a grip on me. I don’t know if any of you share that same struggle. Each time I think I have overcome I am reminded by a circumstance or a memory that I have not fully healed from the many moments of rejection in my past from people I loved.

But I am coming to terms with the idea that God never intended us to blend in. And He provides a continual reminder in His word that our reliance should be placed on Him instead of others.

I can apply this thought to my family specifically, as God has clearly written us a novel that I have never seen in a bookstore.

But I can also apply this thought to the way we are called to live our life. When we strive to fit the mold of the world we will never be fulfilled. I think about those encounters with strangers in the store this week and how yes, it was refreshing but in the end still so unfulfilling. The devil used that temporary high in my heart to plant potential seeds of bitterness.

Matthew 7:13-14 ”Enter through the narrow gate; for the gate is wide and the way is broad that leads to destruction, and there are many who enter through it. For the gate is narrow and the way is constricted that leads to life, and there are few who find it.”

As a child of God I have chosen to walk the narrow road. It seems to foolish to know that I acknowledge that and then I complain about how narrow and sometimes isolating that road can be. As I reflect back on relationships that have dissolved I can’t ignore how toxic many of those friendships were in my walk with the Lord. Sometimes we foolishly mourn over branches that God has clearly pruned from our life to allow healthier fruit to grow.

Instead of looking for eye contact from strangers for encouragement on the road I need to make eye contact with God- because in the end that relationship will never dissolve. God welcomes my mess as He recognizes that He is the one who entrusted me with it.

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Sincerely,

Leah

This entry was supposed to be posted on Sunday night but clearly that didn’t happen! There are certain seasons where the complicated nature of our world feels like water resting just below my chin, distracting me from other things. We are in one of those seasons.

A big part of being a medically complex mom is using my imagination to pretend like life isn’t THAT chaotic. We move through each day in our “normal” level of chaos and do our best to not look left and right…because that’s when we realize how abnormal our normal truly is.

When realities disrupt my imagination I am forced to look complexities in the eye. And then it usually leads to a “If You Give A Mouse A Cookie” situation, a book that tells the story of a boy who gives a mouse a cookie which leads to a continuous circular chain or requests.

After Malachi’s spinal fusion earlier this year he lost the ability to urinate on his own. We have been managing his retention decently, hoping that his ability would return as he recovered from surgery. But here we are 6 months later and the problem still exists.

I don’t know if it is nerve related or something else but either way it needs to be investigated and treated. Urology is a new specialist for us and starting with a new doctor is absolutely exhausting. Summarizing Malachi’s medical history is like reciting the Declaration of Independence. And each of Malachi’s specialists tend to focus only on their specific issue and the solutions often compound other issues.

The urologist decided to try a new medicine that works as an Alpha blocker, allowing him to void more easily. In a typical patient this would be a great plan of action. For Malachi, slight changes in medications can trigger a domino effect in his world and de-rail so many other things, and this round is no exception.

Urology asked us to reduce his medication for his secretions. But reducing that medication caused his secretions to rest at the base of his throat and created some pretty intense respiratory symptoms and horrible oxygen levels. So that led to a visit to the Pulmonologist to explore other secretion management options.

Urology also ordered several tests and appointments, so off to the hopsital we went for imaging and a rough experience with the Children’s Hospital- it is too raw for me to get into right now without getting frustrated all over again. But my heart broke for my Malachi.

We slowly introduced the new medication and when we finally reached full dose Malachi’s epilepsy flared like a fire breathing dragon. This weekend the seizure clusters began, having over 40 seizures on Saturday.

This led to questions about it being strictly medication related….or exploring the idea that his disconnected shunt could also be a factor. I reached out to the Neurosurgeon to ask about an order for imaging who then passed me to the Neurologist. I have been trying to get help for several days now and each of his specialists seem to be passing the issue on to the next. And in the meantime Malachi’s seizure clusters still very much exist with dozens of episodes every day. And an exhausted Malachi.

So when do we sound the alarm? When do I decide to take him into the Emergency Room and work on getting those tests STAT? I feel like this is a urgent situation but when I am presenting it to his specialists they don’t seem to share my level of concern. Do I enter their mindset or stay vigilant in mine, recognizing that no one knows my son like I do.

This, ladies and gentlemen, is called the medical mom dance. Always trying to decide if our chaos is chaotic enough to warrant a true emergency. And recognizing the regret that can easily take root should we not make the right decision for our warrior. But also recognizing that taking him into the Emergency Room could potentially introduce him into something entirely new that will lead to new and serious medical issues.

Malachi is very tired and not himself. When we medicate for new symptoms one of our biggest watchful concerns is whether or not we are trading “quality of life” for symptom management. We are hoping this is a honeymoon phase from introducing the new med and he will regulate soon. But until then we have to limit our interactions out of the house and try hard to not overstimulated his brain.

In addition to that chaos we are now receiving the medical bills from his $1.8 million Vanderbilt stay. Last week we received a bill for over $32,000. We have waiver programs to help us cover what insurance won’t but the phone calls to get the ball rolling and prevent it from going to collections are taking up a large portion of my to-do list. Just to stay compliant in these waiver programs I have to meet with case managers at least once a month, either remotely or in person in addition to all of our specialist appointments which are each an hour away.

My brain is fried. I don’t often reach these levels of exhaustion- physically, emotionally, spiritually. But we are here and I am up to my neck in it.

Please pray for Malachi. He has had such a hard week. And when we don’t have control of his seizures I am uncomfortable sending him to school. He is missing out on a lot right now socially. We attempted the rodeo this past weekend and Malachi had over 20 seizures in less than 2 hours, prompting us to head on home.

We have been trying to make up for the pause in his social calendar with visits to the farm to see his animal buddies. Tonight, Humphrey the baby camel is on the top of his favorites list. But Georgie the monkey and him have also bonded this week over his many attempted (but unsuccessful) robberies into Malachi’s wheelchair bag. Oh Georgie.

And lots of soccer games!

We have also been trying to entertain Malachi at home to keep him engaged and joyful as we sort out his new complications. We used some Kohls Cash to buy a tennis ball launcher for the boys to be able to throw the ball for the puppies and it has been so much fun.

Quick Levi story time. This one has been making me laugh…

Over the weekend I commented to Levi that we needed to go and grab our jackets. He said “Mom, did you know that some people call them jackETS and some people call them jackASSES?” (Obviously not a word that we use in our household)

I asked him where he heard this info and he told me that a kid at school had told him that. We corrected him of course, but hearing that word come out of his tiny 7 year old mouth did catch me off guard.

This week I am praying Philippians 4:7 over each member of my family.

“And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

I love the truth that the peace of God is like armor to a weary heart. Its purpose isn’t simply to provide comfort but to prevent…to guard from further wounding and disruption.

I pray that God’s peace will overwhelm Malachi in those scary seizures. I pray that his heart will be guarded from the chaos. And I pray that same prayer over our family, as each of us process the chaos in our world in very different ways.

God hasn’t given us an easy path to walk, but His presence along the way is a promise I cling to.

Sincerely,

Leah

When I look back over the last two weeks it truly has been a blur. We have been overwhelmed with medical paperwork, phone calls, and trying to navigate the many surprises that this life can bring. This coming week we will tackle 6 different appointments and tests and hope to get some resolution and understanding for some of the newest medical issues that have popped up.

This weekend we did a Carroll first and attempted camping in the woods in our backyard with some friends! We spent the first part of the evening swimming in the therapy pool, eating hibachi, and playing laser tag. Then when the sun went down we headed into the woods for a bonfire and s’mores.

Levi was an excited and anxious mess but managed to stay in the tent all night, much to our surprise. Malachi was very intrigued by the concept of camping, but we were having a hard time navigating how to make it happen for him and his 3am bedtime. I had decided that if he said he wanted to sleep in the tent we would absolutely make that happen. But after an hour or so at the campsite he voted to sleep in the bed for the night.

By the time I got him back up to the house his heart rate was high, his oxygen levels were dangerously low, his seizures started sparking, and his legs were hot to touch like he was running a fever but his core temperature was normal. We think the smoke from the bonfire sparked an immune response in him and his brain went haywire. By the morning he was relatively back to his normal self but started to struggle with his breathing again this afternoon.

Malachi’s body and brain always have trouble adjusting to new seasons. This is his first Fall post-op and I am hoping we see a difference in how his lungs manage these changes!

Our soccer season still has about 3 weeks left and the boys are still enjoying being on the sidelines with the team. It is one of our favorite things to do as a family, and all four of us truly look forward to games and practices with the teens.

Levi hasn’t offered any more of his infamous pep talks. This is year 14 for us coaching at the high school! I remember finding out I was pregnant with Malachi in the middle of the girls season and having to make up excuses as to why I was no longer kicking the ball.

I also remember specific games when I was pregnant with Levi and I would get so into the game he would start going wild with excitement in my belly. I would have to sit down and calm myself down to keep him from wildly kicking me.

Levi is also doing great in school, particularly in science and history. I have been pleasantly surprised by how much he is retaining, and he comes home excited to tell me about the new historical events they are learning about.

Levi’s cerebral palsy makes handwriting exceptionally difficult for him but we are seeing progress in his letter formation. He is reversing several of his letters, even with a guide to reference, so I am pursuing getting him tested for dyslexia. But look at this awesome progress below!

Malachi is still enjoying school and also gets to spend some time at work on the farm with mom while Levi is in school. He looks forward to those special mornings and can’t wait to get the day started.

On Saturday I had the opportunity to speak at a fundraising event for the therapeutic riding program that both boys use for their hippotherapy (physical therapy on horseback). Malachi has been riding for nearly 9 years and Levi has been riding for quite awhile as well.

We see so much progress with this specific therapy, and both boys look forward to their sessions every single week!

I always enjoy getting the chance to share some of our journey with others. I think it is so important to share openly about the hard parts and the hidden blessings. It is also a way for us to share God with others, as He is on every page of our story.

Malachi got to be my date for the evening, much to his excitement (and Levi’s dismay).

He loved the attention of being the only kid there. And he also thoroughly enjoys hearing his story shared and people coming up to meet him afterwards. He feels like a celebrity!

Talking through the different parts of our journey as parents has always been hard to organize. There are so many emotions, trials, victories…it truly is a roller coaster and the emotions that roller coasters elicit are hard to put into words.

This particular speech was slotted for only a few minutes, and whittling our story down to minutes was a hard task. As I shared some of the different chapters I represented some of those hard moments with a screw in a vase, the vase representing my vision of what motherhood would look like.

As I told our story I added screws to the vase for all of the hard parts we have gone through.

329 nights in the hospital

Over 50 surgeries

20 daily medications

Dozens of diagnoses, specialists, and bad reports

As the jar filled up with the screws I explained that there are a lot of sharp edges and hard things that have overtaken that initial vision I had for our family. There are things I will never unsee, emotions that can never be forgotten.

But the backdrop of hard brings out the beauty in the good. And there is so much good in our lives. There are so many blessings that are hidden throughout.

Philippians 4:8 reads: “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”

It is easy to lose sight of the good things God is doing. But the roses in life can always be found when we look hard enough and fix our eyes on the unseen rather than the seen.

I am reading through Romans with a small Bible study group and I spotted a sentence that caught my eye in Romans 8:24.

“But hope that is seen is no hope at all. Who hopes for what they already have?”

One of the biggest hidden blessings of this life is a renewed understanding of hope in Christ. A fresh faith that sees this life as a pilgrimage with a purpose.

Praise the Lord for gift of hope and the knowledge that there we were made for more than what this world has to offer.

Please pray for our family this week as we navigate through some new waters.

Sincerely,

Leah

There are a lot of unspoken conversations that take place in my heart- conversations that just don’t feel safe to say out loud as they sound so messy with no definitive “right” answer.

One of those conversations lately has been surrounding my ability to protect Malachi from mistreatment- both overt and subtle. He is such a pure child and doesn’t understand social structures or seasonal friendships. Frankly, I struggle with this too. I talked briefly about this in a post in July and the topic continues to pulse in my heart and re-evaluate many things.

A painful turn of one of my past friendships (which in turn hurt my sweet boy) has made me cautious towards so many things. One of those being whether or not I should be sending Malachi to school this year. I want to bubble wrap him and not introduce him to relationships that he will value and cherish significantly more than the other party. If I struggle with the emotions of feeling disposable then I can only imagine what it does to his naive and tender spirit.

For a typical child friendships would begin organically, but for Malachi this process requires intentionality. I want to surround him with people who display the unconditional love of God. And knowing that I can’t judge the intentions and heart of others it makes me want to just keep him home and shower him with all the love I have. But I also recognize that that isolation would rob him of so many opportunities for real and authentic friendship.

Malachi started his school year last month and I have watched him from afar, trying to hard to evaluate if school is something that enriches his quality of life. This year we increased his classroom time to 3 hours per day and he floats in and out of several classrooms with several friend groups. And after a month of school I have been blown away by how much it has changed him in amazing ways.

Malachi is now starting to communicate with other students, and they have eagerly and willingly learned how to read his sign language. Not because that kindness will be noticed and celebrated by teachers, but because they truly want to know him. The joy they have when they accurately read him communicating with them is so pure. It has also built Malachi’s confidence in being heard enough for him to attempt to communicate with others outside of the school setting.

He is regulating his sleep into a more predictable pattern, and staying awake the entire time he is at school. This has been one of the biggest surprises for me and a sign that he genuinely wants to be there every day as he is making the effort to change these patterns.

But the biggest blessing for me this past month is seeing so much joy pour out of him. There have even been mornings where he wakes up belly laughing, excited to start his day. Each afternoon as I recap his day at school with him his smiles are uncontrollable and his eyes shine with such an excitement. I can’t help but cry with joy when I see that joy.

School has most definitely improved his quality of life. And it is leading to such sweet friendships that are mutually beneficial and not one sided. He is getting to experience unconditional love from others outside of his family unit.

I also love seeing the heart of Christ that it is cultivating with the other kids. I sit in my car and watch them do such special things, like surrounding his chair and covering his eyes as a team of students from the sunlight when they wheel him outside. This week as I watched him interact with his friends at school I couldn’t help but think that these are the types of friends that would be willing to carry Malachi to the roof and lower him down through it to get him to the feet of Christ.

I am very thankful for the school he is in and the efforts they have taken to provide an inclusive environment for Malachi. In a public school system he would be in a self contained classroom, which would lead to friendships of course but not necessarily allow Malachi to experience the silliness, stinkyness, and chaos of being a typical 12 year old boy.

He is seen as a valued and cherished child of God. It is beautiful.

Levi is also enjoying the start of his 1st grade year and making big gains! The stories I could share with you from the last two weeks would keep you laughing; he always has something on his mind that leads to some pretty fun conversations.

Earlier this week he was getting read for a soccer game and telling me a story at the same time about a disagreement he had at school with a friend. He said “Mom, ______ said I was incapable.” I smiled to myself at the big word and asked him if he knew what it meant, to which he replied “It means I can’t do things right!”

I was pleasantly surprised that he knew the correct definition and then watched him come around the corner with his indignant little face, mad about being labeled “incapable”….and his shirt was on completely backwards.

Our high school soccer season is in full swing and the boys have been enjoying being side line for the games and practices. Levi has been taking his job as Manager very seriously.

Last week the girls lost their game and we were doing a final talk, highlighting the good and the bad from the night. Levi asked if he could say something to the team and I said “sure”, surprised he had something to say. He put on a very serious coaching face and put his hand out, sternly pointing at them and saying “I am ashamed of all of you.” I was flabbergasted and reversed that speech as quick as possible.

We had just watched the movie “Radio” with him and I guess seeing an intense coach on the big screen impacted him more than we imagined haha.

We had an incredible amount of medical appointments over the last week and Levi’s GI doc was happy with his progress on the growth curve. We have been trying to increase his g-tube nightly feeds to counteract the increased calorie burn from recess and school but he is very sensitive to these changes. Even the slightest increase of feed was making him wake up vomiting! It seems we have found a good balance for his belly and calorie count.

Levi also saw the pulmonologist last week and did a test to see if his lung function could be helped with an inhaler when he is active. The results showed that the restricted breathing is still solely from his paralyzed vocal cords.

Malachi had a CT scan to evaluate whether or not the shunt being broken was impacting his brain ventricle size. While the ventricles are a slightly different shape than the last scan the fluid level is still in a safe range. So we will continue to go in for CTs every few months to make sure his body is managing his spinal fluid well.

He also started seeing a urologist for some urinary issues and will require some testing/imaging later this month. It is always a little hard mentally when we add a specialist/diagnosis.

Psalm 91:11-12 “For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone.”
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I have this verse hanging in each of the boy’s bedrooms and therefore walk by it every night and every morning. Lately it has served as a reminder to me that, even though I am the primary caretaker on earth for these boys, God has commanded His angels to carry them through the life that He has chosen for them. And the angelic strength and mission is fueled by the will of God rather than the meager will of man.

Of course I want to keep their feet from striking rocks. But maybe the things I see as stones in the path that I try to avoid are the very tasks that God has prepared in advance for them to do (Ephesians 2:10).

Please pray over the wisdom we need to walk through unknown territories as the boy’s grow older and the fears change. And please pray for my ability to take every thought captive- my mind has been battling so much baggage lately.

Sincerely,

Leah

I am in a silly mood this evening so I figure I will bring you into that mood too by starting with a photo…

I picked Levi up from school last week and happened to notice that his pants were on backwards. I asked him about it and he said “I was wondering why my underwear kept showing in the back!” Apparently he changed into PE shorts and when he went back to his regular clothes got a bit confused haha. Oh Levi.

We have had an incredibly busy two weeks since my last post, and to be honest it stretched me beyond my limits. Settling into a new routine has been difficult. I also added in a new part time role of being a “caregiver” for Malachi through an established company.

Malachi has access to funding through a state waiver program and we have had trouble getting things approved to spend it on, like minor home modifications. One of the options presented was me getting hired through a home care company and using the funding towards my “salary” to care for Malachi. We pay this company a portion of his funds and I work 10 hours a week as his caregiver. Yes, I recognize the laugh-ability in this as I am his caregiver 24/7. But for 10 hours a week I clock-in and chart my shift, documenting all of the tasks I complete with him.

Originally this sounded like a great solution, and a way for us to earn some extra income to do the minor home modifications the waiver program kept denying. But WHEW the amount of work to become hired on as his caregiver was way more than I expected it to be! Hours and hours of classes, zoom meetings, in person trainings, etc.

I completed my first formal shift on Saturday and I am hoping this route proves to be worth the added hours of stress from these past few weeks.

Levi is having a great start to the school year! He struggles with fine motor skills and needs a lot of extra help, but he is showing so much progress. His letters last year were illegible so these are some big victories for us.

He is enjoying school and we are blessed to have him in a setting that perfectly meets his needs. Both Levi and Malachi are still continuing therapies each week and working on building muscle.

Malachi is also thriving in school and really enjoys his new schedule. He is a social butterfly and looks forward to seeing his friends each day. I have been pleasantly surprised by his stamina, lasting three hours each day!

Malachi had a HUGE weekend and he is still reeling from the excitement. This past Saturday Malachi got the chance to run in a 5k with a group called Addie Ray racing! They have special wheelchairs and volunteers to run with them. One of the runners for him was the dad of the Chick-fil-a family we connected with back in 2017 when Malachi’s post went viral!

The day before the race Malachi signed that he was excited, and the morning of he signed that he was nervous. He was very serious during the actual race, like a teenager playing it cool, which made Jake and I smile.

Here are some photos of him crossing the finish line, finishing the 5k in just over 22 minutes!

Here is a quick video from his special day:

And here is his post-race interview later that evening:

After the race he went to a school friends house for a birthday party and had the best time playing with his friends. The birthday boy made an extra effort to include Malachi, choosing games he knew he could participate in. Needless to say, Malachi’s cup was filled to the brim this weekend with joy and inclusion.

We have several big appointments over the next two weeks. Both boys see the pulmonologist and the GI doctor. Malachi has a CT scan and an appointment with the neurosurgeon to decide what to do about his broken shunt. And Malachi starts seeing a new specialist next week. Lots of hospital trips on the horizon, but hoping for some good reports!

Last week I took the boys on a quick errand and we ran into someone we had not seen in a few months. He made a brief comment about another special needs family in our town losing their son after 30 years and how lost they now were without him.

We get these comments a lot from very well intentioned people. When you are disconnected from our world it can be easy to lump all special needs kids/families into the same category. But diagnoses, outcomes, and families are all so different so I often let comments and situations like these bead up and roll off me- scared of the emotions that will bubble up if I allow myself to role play too long.

But as we drove away I looked into the back seat to see tears streaming down Levi’s face. He was doing his best to hide them from me. I pulled the car over and turned to talk with him and the dam broke loose. He started sobbing, asking me why that other boy died? I truthfully didn’t know but asked him if that made him worry about Malachi dying. He nodded yes and my heart ached for him, seeing a reflection of section of my heart I do my best to hide from my children.

We talked about God’s plan for Malachi’s life. And how he has already lived WAY longer than any of the doctors predicted. I explained that God has a plan for Malachi and that is why he is still here; and how blessed we are to have such an amazing son and brother. Malachi listened intently to every word, showing his proud face as we talked about him defying the predicted outcomes. And Levi nodded through his tears.

But my heart continued to hurt as we made the rest of the drive home. The heaviness that talks like these must have on Malachi….and the questions that must brew in his brain when others share hard things like this around him. And the weight that Levi carries, loving Malachi so much that it pains him to imagine a world without him. This is a part of special needs parenting that there isn’t a guide for. So I have to follow my heart. Sometimes that means pulling over on the side of the road and entering that space with them. Sometimes that means telling them what they need to hear at the moment…even when the words don’t match the statistics.

Last week I had the honor of speaking to a group of people in a drug rehabilitation parolee program. This was the first time I had the chance to share a bit of our story with a non-religious group, but I also had permission to talk about God within that story. The day went beautifully, and they listened with such intensity as I shared.

As I prepared for that day, I asked God to give me the right words to say and the scripture he would like me to focus on and he led me to 2 Corinthians 4:

“But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed but not in despair; persecuted, but no abandoned; struck down, but not destroyed…Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary but what is unseen is eternal.”

Oh, how grateful I am that there is more to this life than what I can see. I am thankful for the hope we have in Christ Jesus. I can’t imagine trying to walk through this life without hope in Him.

Thank you for checking in on our family, and I hope to have some good medical updates for you the next time I write.

Much love,

Leah

School is officially back in session! Levi walked in this year with confidence and excitement.

Malachi was a little bit nervous, but those nerves went right out the window when he pulled in and all the kids started shouting “Hey Malachi!”

Transparency moment- I have had some big emotions this week. Last year when we started Malachi in a new school he was very quiet and anxious. It took him several weeks to get comfortable enough to sign with his teachers and interact with other kids his age.

On day one of this year he was joking with his teachers and by day two he was signing that he wanted to sit with a different group of friends at lunch. He feels safe, seen, and heard. He came home from the first day of school giggling and he didn’t stop until bedtime. He was SO excited to tell Jake about his day and can’t wait to go back again this week.

Malachi gets to make choices about what his school day looks like and his choices make me laugh. Last week he chose study hall haha. He is attending 3 hours a day, 4 days a week, leaving a day for therapies. I stay on site for medical emergencies (a cooperative agreement we have with his school as they are not fully equipped for medically complex) and spend the time in the lobby knocking out tasks for my two remote jobs.

Having something for him to look forward to each day is just such a gift for us all. Our goal is quality of life for Malachi, and I often feel like I am failing him at that goal. But this week I have watched a light dance in his eyes again and it has blessed us all so much.

And y’all….we had to shave his mustache off. Yes, you read that right. Malachi is officially shaving and very proud of it.

Flashback to Malachi’s first ever day of school. What a little nugget he was!

This weekend Levi started talking to me about school and suddenly grew very sad. I asked him what was wrong and he explained that when he is on the playground at school with his friends he gets really tired and can’t breathe. He said “Mom, all the other kids can still breathe and they just keep playing, but I have to stop and sit down.”

I had to catch my emotions quickly in that moment and give him a big hug. Sometimes it is hard to be different. And he is officially old enough to start noticing those and mourning those differences more.

I continually tell him that God is writing a pretty amazing testimony in his life, and that it is okay that he does things a little differently than other kids. But sometimes those big concepts don’t always ease tiny hearts.

There are more surgical interventions we can do with his airway, but they will reduce or even remove his voice and his ability to eat by mouth. Jake and I have always said that we would like to wait until he is old enough to make that decision for himself.

Malachi is truly loving his new chair, especially now that we added a giant snake all twisted around the frame. He was giggling thinking about all the people in his world that will be scared of it and I snapped this silly photo. He is such a prankster.

Jake and I actually had a pretty hard conversation last night, discussing some of our biggest fears for the boys. He told me that Levi choking on food when we aren’t around is currently on the top of his list. With a wide open airway that can’t close itself, the risk of choking is much much higher.

The amount of lingering fears we hold for our boys is overwhelming. And we have to keep reminding each other that their future rests in the hands of a very capable God. He knows the rest of their story, and trusting in His timelines is a big part of faith.

In lighter news: WE GOT OUR VAN BACK! We are now working with insurance to get reimbursed in full for the rentals we had to get over the last month. But being back in my van has made me appreciate it even more than before!

It is incredibly easy to get overwhelmed in our medically complex world. I could go on and on about the battles we have to continually fight. The hoops we have to jump through. These menial tasks have a unique way of making me feel isolated in this calling and the weight of fighting each of these bills, stop signs, clerical errors, and nonsense can get very heavy.

Adding those “extras” to our everyday life, medication schedules, appointments, etc oftentimes push me beyond my limits.

I was overwhelmed this weekend as I talked with Jake about the many things I have to tackle when businesses (and phone lines) open back up Monday morning. I was explaining to him about this bittersweet spot we are in, wishing for a less strenuous lifestyle but recognizing that the cost of that trade off is our literal worst nightmare.

I oftentimes find it hard to even know how to pray. There are days I thank God for the chaos, recognizing it is a life I almost didn’t get with my Malachi. And there are days where I mourn the normal and the calm, speaking these emotions to God through tears.

In 2 Kings 6 there is a story about the prophet Elisha and his servant. An enemy king send his army to the city Elisha was in to capture him. That morning he woke up early and walked outside of his tent to see an army with horses and chariots circling the city.

“And his servant said to him, ‘Alas my master! What shall we do?’ So he answered, ‘Do not fear, for those who are with us are more than those who are with them.’ Then Elisha prayed and said ‘O Lord, I pray, open his eyes that he may see.’ And the Lord opened the servant’s eyes and he saw; and behold, the mountain was full of horses and chariots of fire all around Elisha.”

I often have the eyes of that servant, blinded to the hand of the Lord that is very actively working behind the scenes of our battles. We miss the rescue that is taking place when we continue to focus on the flames of the fire.

This week I have needed an “open his eyes” moment from God…a reminder that He is indeed at work and I am not alone in this daily fight. This is a truth that has never changed, but one I tend to forget what I am focused on my own inept abilities.

Tonight I am thankful for the army that I can’t see, and the God that has dispatched them. What a merciful and loving God He is to continue to rescue us again and again when we continue to fail.

Blessings,

Leah

I have been trying to get this blog update typed for days now and every time I look at the clock to sit down and type it is 2am and sleep wins!

School starts back in less than a week and we have been filling our last few weeks with all kinds of adventures. The boys have been spending lots of time on the farm with their friends (both animal and human).

Last weekend my sweet grandmother turned 90 years old and we had a big surprise birthday party for her in Ohio. With the car accident we weren’t confident we would be able to make it there, but thankfully we secured another handicap rental van and made the drive. The boys were so excited, particularly Malachi. He loves his Grammy. He giggled and giggled as we packed the car.

Here is Grammy with several of her great-grandchildren. On a very random side note that might fascinate you….check out this side by side photo of my Grammy and I from 4th grade. The resemblance is uncanny!

While we were in Ohio we got to spend time with family and eat some nostalgic food from our childhood.

Levi is determined to grow taller than his grandma! Each time we see her he is a few inches closer to his goal.

We also visited a place I used to go as a child called Young’s Diary Farm. They have several small rides for kids and out of all of them Malachi really really wanted to go down the giant slide. It took a lot of sweat and effort but I managed to carry him up those stairs and give him a ride down! My entire body felt it the next day for sure.

The boys will start back to school next week which is quite the process for medically complex families. Routine changes are hard, and the medication schedules have to be adjusted to keep them from having to get meds at school. So that means easing Levi’s meds back 3 hours each morning/evening and trying desperately to get Malachi into bed before 3am.

Levi will be entering the 1st grade.

And Malachi is going into 7th grade. He is doing a hybrid blend again this year for schooling, going part time to a local private school where he will have opportunities for inclusion in the general education class. I also think this year he will get to be a teacher’s aide in a classroom, which he is very excited about.

And he finally got his new teenager wheelchair! This round he picked out camouflage. This photo was from the delivery day. He wanted it jazzed up a bit more with snakes and spiders and more camo. So we went to work and added some special touches that he is awfully proud of.

This has been our best summer yet in the fact that we have felt like a “normal” family. I was looking through Facebook memories today and on this day alone we were hospitalized 5 different years our of the last 7. Our July is usually full of medical appointments and drama. But this year we were blessed enough to be able to knock them all out at the beginning of the summer, leaving a true summer for our family.

Our van is still being repaired and we are hoping to have it back within the week. The wreck bent a lot of frame pieces and repairing it proved to be a pretty big job.

Levi has been struggling with anxiety since the wreck and it is manifesting itself in some really big ways. Things that used to not bother him, like thunderstorms, now set him into a complete panic and his anxiety consumes him.

We have been having lots of talks about what trusting God looks like and what “faith” truly is. We have gone through the Bible with him, talking through what it looks like to trust God, using Biblical characters to show him what a life of faith looks like. He understands it but when the hard moments come he slips back into complete and total fear.

Oh, how relatable that is for me.

It is easy to trust God when the sky in life is bright and the sun is shining. But it is in those dark cloud moments that you find out if the roots of your faith have grown deep enough to handle the winds in life.

As I have been telling Levi (and reminding myself), trusting in God is an every day, hour by hour, minute by minute choice. It isn’t ever something that we can master, and it is a muscle that can weaken when not in use.

Malachi and I have been having lots of good, deep talks lately. I have been worried about his mental health, as we have had to tell him no to things, like going down the slide more than once. He has been experiencing a lot of disappointment lately and oh how that breaks my heart for him.

We have also talking about relationships and friendships. Being a long term friend to Malachi is difficult. He can’t talk to you on the phone and he can’t participate in just any activity. Friendship with him requires physical presence and intentionality. And not everyone is ready for that level of commitment.

As a result, many of his friendships over the last few years have disappeared, leaving him feeling disposable (or at least that’s what I am gathering from our talks). I find myself getting very protective of Malachi, recognizing that I opened the doors to many of the friendships that have dissolved. I don’t want to lay out the welcome mat to people that will hurt him. He values people and “seasonal” friendships is a concept that he doesn’t yet understand. There are sides to medically complex parenting that lay dormant and this is a new one to navigate.

Please pray for wisdom for us as parents, and for peace in the boy’s hearts for the hard things they are navigating.

Thank you for being patient on this update and taking the time to check in on our family!

Much love,

Leah

Jake and I have been talking about how much fun this summer has been, particularly our ability to relax and just be present as a family. We have had all sorts of adventures, including a beautiful fireworks show the night before the big day.

The 4th of July rolled around and we had the idea to go to a late night movie as a family, assuming most families would be watching the fireworks, giving us the theater to ourselves. Movies are always a little more complicated with special needs kids as many things can trigger seizures. I also have to narrate the movie to Malachi, whispering in his ear, and when there is a full room I am always self conscious about disrupting the movie for others. There were a handful of other families in the theater when we arrived and when the lights came on at the end of the movie we realized that it was full of other special needs families that we knew from various legs of our journey! I guess we all had the exact same idea and plan!

We all had a good laugh then we headed toward home, stopping for milkshakes on the way. We made it about a mile from home and we were hit by a car trying to pass us (on a double yellow) as we turned left- he said he thought our left turn signal was a signal for him to pass us. He smashed into the driver’s side of our wheelchair van and in addition to body damage it broke the arm holding the driver’s side tire on.

Thankfully we were all okay and no one had any injuries. Levi was an emotional mess but we are praising God for His protection. The car is not drivable so we are working on solutions while we wait for the repair to happen. This weekend we were finally able to get the car into a body shop to start the repairs process. And we have a rental handicap van starting this week.

Later that night I was looking over Malachi and found a protruding piece on his side. This was NOT from the wreck and was something I had spotted right before we left for the movie that night as Jake was putting him in his chair. He didn’t seem bothered or in pain so I decided to wait until we got home that evening to investigate.

It rests right on his incision and felt very much like a piece of hardware so my brain immediately went to the worst possible outcome- another loose screw or rod. This spot popped up seemingly out of nowhere overnight and was not there the day before. And Malachi tremors when we touch it. I sent these photos to the on call orthopedic surgeon and he suggested we come in immediately through the emergency room.

Unfortunately we were without a way to get him there. We could rig him up in Jake’s pickup truck but it isn’t the best positioning for him for the 3 hour drive there. I asked the doc if they would do anything over the weekend if we did bring him in and they explained they would likely wait until Monday so we asked if we could also wait until then and just be cautious over the weekend. They agreed and we started the process of finding a car to transport him and his chair in.

A friend came to the rescue, allowing us to borrow her larger SUV. It was a tight fit and required disassembling the chair a bit but we were able to rig it up for Malachi to transport safely and off the to the hospital we went first thing Monday morning- loaded down with enough supplies for what I assumed would be another hospital stay.

We made it to the hospital by lunchtime and checked his x-rays, which confirmed that all hardware was still in place! It is a portion of his floating rib that seems to have suddenly shifted. There isn’t anything we can do with that piece aside from remove it, which we obviously aren’t interesting in doing unless absolutely necessary. So we are just being extra cautious with that side and watching for skin breakdown or pressure sores. It definitely feels freaky though!

And I was absolutely excited to be able to drive home that same day!!

We went from a family movie and milkshakes to a car wreck and emergency hospital visit in just a few short hours. And it emotionally drained me. Malachi had a great attitude, excited about spending alone time in the hospital with mom. Levi watched me pack the hospital bags and just cried and cried, preparing his heart for another long spell apart.

It is wild how fast things can change with medically complex families. We are always a few short steps away from hard.

But this one fizzled quickly and we are back to life, as normal as it can without a handicap van. We have spent most of the week at home and we are ready to be able to be mobile again and prepared for emergencies.

Levi has been working on swim lessons and we have been spending a lot of time in the water outside of lesson time to reinforce the things he is learning. His breathing is hindering him slightly with how long he can stay under but he is improving. And Malachi is also loving all the extra swim time, especially the nighttime swims.

Summertime is always a tricky thing. The more we spend time around one another the more jealousy tends to brew. I get jealous of Jake’s sleep filled nights. Levi gets jealous that Malachi gets to “stay up so late”. And Malachi gets jealous very easily in all things that Levi gets to do. Earlier this week Levi and I were playing a game of memory and Malachi signed that he was upset. He wanted to be playing but I couldn’t think of a way to play the game with him, as he can’t see the cards or the layout.

Malachi realizing he is being left out and signing his sadness/disappointment to us is absolutely one of the hardest things for me to navigate. I can feel my heart break with his and knowing that I am doing something that contributes to him feeling left out is a guilt ridden ride for sure. We started to search for something similar he could play too and found this sound memory game on Amazon.

He could hear the pieces, each pair with a unique sound inside. But how would we identify each one where he could sign the match without seeing them?

We developed a system where we named each piece by row and place- so 1a, 1b, 1c, 1d, 2a, 2b, etc. And then we gave it a whirl. He would choose a bell and we would identify the label. Then we would ask him “Is the match in row 1? (No) Row 2? (Yes) 2a? 2b? 2c? (Yes)” By game three he was beating all of us, legitimately and fairly. I have been so impressed by his awesome ability to remember each sound so accurately and match them up. And he was SO PROUD to show off his intelligence.

Parenting Malachi has so many wonderful surprises within it. And requires SO MUCH creativity and investigation.

Levi is now determined to beat Malachi at the game, and Malachi is loving the drama. Game on.

Summer has been a wonderful opportunity to reset in a lot of ways. Having Jake home has given me a chance to re-establish many of my routines, including time in God’s Word. The opportunity to sit down and focus has felt like drinking ice water on a hot day.

This week as I watched Levi’s intense reaction to the car accident, followed by his reaction to me packing for the hospital I was reminded again that he is carrying a heavier load than most 7 year olds. And then I look at Malachi and see the physical, emotional, and mental load that he is dealing with on a daily basis and I feel a pang in my heart- wishing that life were easier for both of my kids.

I have a walk with the Lord, and have had time to hide the truths of God’s Word in my heart. I have had the opportunity to grapple with my faith, to ask the why, and learned to accept the no, recognizing His mysterious ways and plans. But my boys are so young- in age but also in a walk with God.

I can’t take away Malachi’s pain. I can’t take away Levi’s PTSD or heal his airway. I can’t fix life for my boys and make it easier to manage or less stressful. But I can teach them through God’s Word and example which direction to look when things get overwhelming. I can share my own experiences with them, casting my anxiety on Him (1 Peter 5:7) and “taking every thought captive (2 Corinthians 10:5). I can remind them that when we are weak that He is strong a hat that God’s grace is sufficient (2 Corinthians 12:10). I can teach them to use the Word of God as their greatest weapon against the many attacks of the enemy.

Parenting is a form of refinement that can’t easily be replicated. And sometimes that refinement can hurt, but it yields such beautiful changes. And what an important role we have, serving as an ambassador of Christ to our own children.

This week I am feeling challenged to re-address the areas of my motherhood in which I have become lazy, particularly in helping them develop theology and understand the gospel. And then watch as the Spirit of God does a mighty work in each of them.

Please be in prayer for some very specific needs for our family. The amount of paperwork we are currently dealing with for just medical things is overwhelming, not to mention school program paperwork and now car insurance battles. It feels like a full time job trying to keep up with everything while still maintaining med regiments and normal medical schedules. Please help us pray for favor and speediness in getting our van back and the claims settled.

Thank you for checking in on our family!

Sincerely,

Leah

This summer has been such a special one, filled with lots of family time and fun memories. The older the boys get the more creative we can be with our outings, and their reactions to even the simplest things is a blessing.

We took the boys to the drive-in theater last week for the first time to watch How to Train Your Dragon, the live action version. Malachi was VERY into the movie and it was a little too much for Levi. At one point he got scared by the dragon and shouted at the screen: “All things work together for good for those who love God!” He has us laughing often at all of his antics.

The evenings have been cool enough for some family walks and almost every night is family game night! Malachi LOVES playing games. His new favorite is Uno Attack, which shoots cards out at you. He and Levi have been teaming up trying to beat mom and dad and hearing Levi lean over and whisper the cards to Malachi to keep him included is so sweet to watch.

We tackled an incredible amount of appointments over the last two weeks, but thankfully that clears up our calendar for a bit and gives us several appointment free days to look forward to.

The boys are both underweight and their GI doc isn’t pleased. We have plans set to help add some calories through their g-tube feeds by increasing their volume. Levi gets his g-tube feeds overnight so we attempted to increase by 3 more ounces and he spent all night projectile vomiting. We are going to slowly increase the feeds to make sure he is tolerating it better, but every night as I go to sleep I wonder if we are going to have a repeat incident and wake up to a mess!

Malachi still isn’t sleeping well so we are introducing a new medication to help with muscle spasms to see if it will allow him to be more comfortable when laying flat. We also put a recliner in his bedroom so when he wakes up, usually about 2 hours after he goes to bed, we transfer him to the recliner with support pillows and he gets a few more hours of sleep in the sitting position. This weekend he has been staying up until 4:30/5am, unable to get comfortable. We reach full dose of the new medication tonight so we will see if it is a viable solution. We have to come up with something! If it weren’t summertime and I didn’t have Jake here to help with Levi in the early morning I wouldn’t be functioning very well.

When we were in the hospital for Malachi’s fusions Chick-Fil-a reached out and asked if they could set up a surprise to cheer him up. We didn’t know what they had in mind, and had to delay until he was back to himself, but last week we finally made it over to our local Chick-Fil-a for his surprise! They had a table set up for Malachi and made him the VIP of the day. Corporate sent a giant box of presents for the whole family and they made Malachi an honorary employee with his very own name tag. He was overwhelmed at the actual event but is very proud and has been smiling about it ever since.

They also let Malachi order anything he wanted off of the menu and of course he ordered a chocolate milkshake with extra whipped cream!

What a sweet and kind gesture it was to our family. One of the biggest priorities in our life is making memories- recapping all the fun moments and stories is one of his favorite things to do. “Remember that one time…” This is a very special one to add to that book.

Last weekend I headed a few hours away for a special needs mom retreat in middle Tennessee. A few days before the retreat Jake ended up getting sick, and if you know my crew you know that sickness, even a common cold, knocks Malachi down for weeks. As the days ticked by I was just sure that the sickness would spread and I wouldn’t be able to attend the retreat.

I truly believe God bubble wrapped the rest of us and by Friday night I was in the car and headed west. As I drove over I started to feel self conscious about being solo for this event but I really really needed the time to reconnect with the Lord.

The conference was so special. Being in a room surrounded by other moms in similar circumstances and trials was amazing. But worshipping alongside of them was an emotional experience for me. Here we were, each of us carrying a heavy calling, but still choosing to sing praises to God. The testimonies in that room would blow you away. But there was such a comradery in our journey through hard things with unknown outcomes. So many of us in that room have walked through the shadow of death many times.

And Jake did phenomenal holding down the fort back home. There are so many hidden tasks that we have to be responsible for….medication administration (Levi gets 5 doses a day and Malachi gets 16 a day), feeding pumps, diaper changes (quite a process right now for Malachi), breathing treatments, and so much more in addition to normal, every day life and tasks on very little sleep. It’s easy to get overwhelmed but he did excellent.

I left the conference feeling rejuvenated to continue in the calling I have been given. And a freshened perspective about God’s presence even in the darkest places of our walk.

Romans 15:13 “Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit.”

He is the God of hope and our joy and peace can only come from Him. I can’t imagine this life without confident hope in the Lord, a true gift from the Holy Spirit.

Thank you for checking in on our family, and continuing prayers over our boys.

Sincerely,

Leah