I was going through my camera roll trying to find a few decent photos for tonight’s post and realized that I have just one photo from the last two weeks.

We have been moving a mile a minute and trying to keep up with the many things going on right now.

Malachi and I took our trip to Nashville two weeks ago and met with his new Urologist to discuss his neurogenic bladder. As you may recall, I was having some big emotions surrounding this appointment and anxiety in starting over with a new specialist. But the appointment went so incredibly well!

The new doctor believes that what we are doing now to empty Malachi’s bladder is working well enough to continue without intermittent catheterization. He does think we will eventually have to start that routine, but for now we are going to watch and wait. He did not feel that the Botox injections were worth the hassle as they only last for 3 months and he requires being put under anesthesia each time for these injections.

The doctor listened to all of our concerns and even waited patiently for Malachi to respond. I was so proud of him as he used his communication device two times during the appointment, particularly expressing his excitement that he didn’t have to be catheterized daily. Our next appointment and ultrasounds with him have been set up as telemedicine/remote visits so we can avoid making the 6 hour trip.

We have had several other appointments in the last two weeks, but nothing noteworthy to report. We have also had an incredible amount of rescheduled appointments that are now moved to the end of the summer. Truthfully, I am not mad about the last minute changes, as we needed a few moments to breathe.

Levi’s anxiety continues to rise as we prepare for his Cincinnati trip. He has started to develop a stutter, something that happens when his system is feeling overwhelmed. He is extremely fragile these days, and small things feel like big things as he is trying to keep his system regulated. Each day he finds something new to have a meltdown about, needing to express big emotions.

This is the final week of school for all three Carroll boys. Jake will wrap up teaching this coming Friday, and Malachi and Levi will also be done. We have several summer projects to tackle and new routines to establish.

We live in a beautiful area with several amazing outdoor spaces to explore. This past week I ended up at a local river twice, once for Jake’s end of the year cardboard boat project and once for a birthday party. As I drove that familiar drive I flashed back to college Jake and Leah, as we would spend our days weekends hiking up the steep mountain above this river, playing in the muddy caves below it, then jumping in that river in the middle of the night and floating by the moonlight to rinse the cave mud off. We would camp under the stars and talk about the 4 children we were going to have and all the adventures we would take them on.

We had such fun adventures, and not a care in the world.

I smiled this week, mentally allowing myself to flashback to different scenes from the past. Sometimes it feels unsafe to allow myself to flash back to those moments, as it leads me to long for a future Jake and I used to talk about having.

But I am thankful for those memories. And I am thankful for the many moments of friendship and carefree love that Jake and I had in those early days. Such a bittersweet memory for me.

We are nearing closer and closer to some pretty big hospital days for our family. I find myself being drawn in to the Lord as my anxiety builds, almost like my heart knows that I am ill-equipped to handle what is about to come.

I want to encourage you to take a moment to watch this video, as it so accurately displays the struggle of a medical mom. Please know that it is a raw video and hard to watch, but is incredibly accurate:

https://youtu.be/8CenL-3O_m0?si=b3qAhC76VMdiix9t

Raw and honest moment…
Medical moms. We live in a world that is hard to explain to others, but this video does a great job of letting you see behind the curtain. Every scene in this video has been me at many points over the last 13 years. I often look in hospital mirrors and do not recognized the grief-stricken person staring back at me. But we have to take a deep breath and keep going forward with optimism for the sake of our scared children.

Three years ago someone came to me and told me that I am one of the most inauthentic people they have ever met, manipulative, living the life of a hypocrite, does not believe that I hear from the Lord, and said that our other friends feel the same way.

Those words wounded me. And truthfully still do, as my prayer is to point others to Jesus in word and in deed. I have approached the Lord in humility and asked Him to show me any truth in their words. And God and I have had some beautiful conversations about it and the stewardship of His grace for my inadequacies as well as the wounding words of others.

The truth is, there ARE two versions of a medical mom, as this video portrays. And while we would like to compartmentalize our hardships and their lasting impacts, they blend into every aspect of our lives including friendships.

There is complex PTSD that I deal with on a daily basis….and many times I do not feel safe enough to share that side of my motherhood with many. It is such a fragile side of me, and when I sit it in too long it affects my ability to be the caregiver I need to be. And I truly believe the Lord doesn’t want me to set up camp there. When you ask me how things are going I will often instinctively answer “Pretty good”, as I mentally evaluate if you are really desiring to carry the emotional load of my honesty or just making conversation. I have seen in the past that my honesty can make others very uncomfortable. This is why I write my blog- it is my safe space to be honest.

But there is another side of me….a pretender. Someone trying to relate with the normalcy around her that doesn’t exist in her own life. A mother trying desperately to protect her children in a necessary world that can carry a lot of physical and emotional scarring. Medical moms feel the continual drive to shield or distract our children from trauma, which requires us to take a deep breath and pretend like everything is okay….even when it is far from okay. Our children and spouses see behind the mask, but play the game with us to help us all survive the scary paths. I can’t hide anything from Malachi- we are connected in ways I can’t explain. And 8 year old Levi is starting to understand the game as well, as we gear up for his 30ish surgery next month.

So can I be inauthentic? I guess you could say so. But it is not a deceptive tactic….it is a trait that our hard path has created as we process layers and layers of trauma and can’t find safe people in our world to share that with. I am not praising this trait as if it is a good thing, but rather asking for grace as we wrestle with it. It is not a badge of honor that we wear.

The further in this journey I get the more I realize that the ONLY one who is capable and eager to carry my load is the Lord. He assigned me the role I have been given, knowing that I am not strong enough for it. His power is made perfect in our weakness.

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11:28-30

Any strength you see in me is a mirror showing you a glimpse of HIS strength. I am broken, flawed, and incapable of surviving this calling apart Him. And the dependency on Christ that this calling requires is truly a gift.

“I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me.” Galatians 2:20

Please keep our family in your prayers this month, particularly for God’s peace to overcome our fear.

Sincerely,

Leah

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters, he refreshes my soul.
He guides me along the right paths for his name’s sake.
Even though I walk through the darkest valley,
I will fear no evil, for you are with me; your rod and your staff, they comfort me.

You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.

Psalm 23

This week I read through this chapter and grew unexpectedly emotional, starting to feel the weight of the season we are entering. I have talked about this before, but when you have medically complex children you are asked to walk often through the valley of the shadow of death. While these upcoming surgeries for both boys are not expected to be life threatening, they take us into a world where both of them have faced death. And the memories of those experiences have seemingly woven themselves into my DNA, creating such anxiety in me when we have to re-enter those places.

That anxiety is felt by all of us. I am then challenged to try to protect my boys from absorbing it, as each of them carry unique anxieties of their own and shouldn’t have to bear mine.

We have been through the valley before. We know how to pack. We know how to prepare. We know how to get there. But it doesn’t make the trip any less dreadful.

Each year, around a month before his summer surgeries, Levi begins to have intense anxiety and cannot let me out of his sight when he is home. This week it has started, and he has to be by my side at all times. We are doing our best to keep our days busy and keep his mind focused on other things.

This weekend Levi wrapped up his outdoor soccer league. He was a social butterfly, definitely more interested in hanging out with the cool college players that coached his team than actually playing the game. But He smiled at the end of each session, and practiced some independence so we consider it a win.

After his final game I asked Levi to pose in the yard with his medal. He asked if his daddy could take a photo with him, which we happily did.

But after that photo he said “Mom, we have to go in and get a photo with Malachi too! I don’t want him to feel left out.”

So we did just that. And of course my heart melted seeing Levi be so intentional, and seeing such joy from Malachi.

Malachi enjoyed sitting on the sideline this season and listening to the games each week. He loves a good competition.

Tomorrow Malachi and I will make a 6 hour round trip to Vanderbilt to meet with his new urologist. I have such mixed feelings about this appointment. I was trying to explain my emotions to Jake this evening and was able to explain it a bit like this…

Vanderbilt moves patients through like a factory. Most hospitals do, but they seem more focused than others on getting you in and out as quickly as possible.

We are meeting with a brand new department tomorrow, which means I will have about 15 minutes to communicate his current and relevant past health, current and past urinary issues, our family’s goals/priorities for Malachi’s life (which don’t often match medical flow charts), and come up with a course of action. I expect we will leave with an operating room date penciled in for more Botox injections and a follow up appointment. I am already a little fragile at the moment with dread for the upcoming few weeks so I am really hoping for a productive and thorough appointment where we can feel seen and heard and my son is treated with the dignity and respect he deserves.

Malachi is aware of his upcoming surgery on his hip, and surprisingly he is very clearly signing that he wants to have it done each time I present the option. He has emphasized that his hip is causing him pain. I am so thankful for his ability to communicate with us. And his brave little heart never ceases to amaze and humble me.

Malachi has hit another growth spurt in both weight and height. Just this week I have started to consider starting the process for a ceiling track system. There have been a few times lately where my confidence wavers when carrying him down the hallway to his changing table, and I don’t want to wait until we have an incident to get something safe in place.

We have been getting a lot of great Malachi smiles lately, and overall his health right now has been stable.

The boys have been coming to work with mom a lot lately, and get paid in animal snuggles.

So back to my intro verse above…

As the tears welled in my eyes this week reading through that familiar Psalm, God highlighted one of the verses for my heart.

You prepare a table before me in the presence of my enemies.

There is such comfort in realizing that God knows we are traveling back into that dark valley. He knows the weariness that aches in my bones. He sees the fear in the eyes of my children. He sees through my facade of confidence and sees my brokenness as a mother, unable to take away the pain in my children.

Yet in all of this, He has prepared a table for us. He has created a respite for us in our weariness, a table overflowing with His peace.

That prepared table reminds me that sometimes the valley of the shadow of death is exactly where we are meant to be. It is in that very valley that we learn the depth of the love of God.

In the darkness we have no other option but to follow our Shepherd- sustained by his provision, guarded by his protection, and wrapped in his divine comfort.

It is in the valley we feel the gentle nudges of his staff, guiding us away from the danger and towards the paths of righteousness. Those nudges are often dulled when we are in our world of comfort, but magnified in the echoing valley.

It is there where we see the droplets from His anointing drip off of our heads, saturating the unknown ground and reminding us that God’s power is made perfect in our weakness. He will give us a portion of His strength- the exact amount needed to fulfill the tasks He is calling us to.

His abundance. His mercy. His goodness.

The valley trains our eyes to look to Him.

And the table is evidence that He is leading us to the exact place we are meant to be.

Please remember our family over the next several weeks in your prayers. Specific prayer needs right now are Levi’s anxiety, our endurance, and Malachi’s peace.

Much love,

Leah