Last Sunday was Father’s Day and just happened to be the day we loaded up a bus with 40 teens and drove them to camp for the week! Poor Jake. But I did promise him a Father’s Day re-do when we returned home.

This is always a week we both look forward to each year; watching young men and young women grow closer to God never gets old.

In my unrealistic brain I had it planned out to bring the teens to South Carolina and later that evening finish the blog post but clearly that was a little too ambitious! By the time we got settled for the week I was preoccupied with all of the responsibilities we were juggling and I never want to post something out of obligation, so I decided to postpone the entry for another week.

So let’s talk about camp! This was our 11th year taking the youth to camp, so Malachi and Levi have quite literally grown up taking the teens to camp. I did a few re-creation photos this week that I thought you might appreciate.

And for some background on the first one…Malachi was four months old and had just been discharged from the NICU. He was less than three weeks post op from his second brain surgery. He also had both hips dislocated and a broken femur from the NICU (brittle bones). He wasn’t able to safely drink bottles sitting up, but if we propped him across our lap on his side just right he could eat without aspirating. Whew what a complicated life we were just starting! That year Jake went to camp with the kids and I visited with Malachi in tow. And this years photo- I think it is safe to say we have both grown a lot since that first photo haha!

Jake stays on site with the teenagers and I rent a house close by and commute back and forth each day/night. I have two wonderful friends that help me each year, helping care for the boys at camp and then watching them each evening so I can attend the chapel services and connect with the kids. There is so much freedom in being able to be child free and have some great God conversations with the youth.

Transparency moment. I am not sure how much longer I am going to successfully manage this. Taking care of Malachi away from home base is so incredibly challenging. It is hard to explain. I can take his equipment and his specialized seating but without the routine of home it catches up with him (and me).

The morning we left camp Malachi started having an incredible amount of seizures back to back. And in the in-between moments his face was twitching with some clear brain misfiring going on. Before we made it home he had at least 2 dozen seizures and was very off. We got him unpacked from the car and he started what we call a “seizure fever”, a fever that has very distinct characteristics (spotty fever, only hot in certain body sections). His little brain was just panicking and he still isn’t 100% back to normal 48 hours later, even after sleeping nearly 14 hours straight.

Malachi wants to be at camp. I want to be at camp. But I find myself questioning if I am doing the right thing by taking him on these adventures, knowing the medical crash that can sometimes happen. We always prioritize quality of life with him, but oh the parenting dilemma it can bring.

We also dealt with a next level anxiety from Levi. Each night when I would leave to go to chapel he would panic, screaming and crying for hours. This is something he used to do when he was younger, but he seemed to outgrow it. Lately he has been bringing up his surgery, so I don’t know if his emotions are stirring knowing something hard is coming up. But either way, this was not your basic whining, this was intense emotions.

But aside from the child drama, the camp itself was amazing. The God stories that these kids have from the week, and the things God taught each of them remind me that we are so blessed to get to walk with these young brothers and sisters in Christ. What a blessing it is to have this privilege and opportunity.

Life lately has been wonderfully busy. Jake’s family (all 18 of us) meets up each summer for the adults to catch up and the cousins to play. This year we took the group out to our favorite exotic animal farm and spent some time playing with the animals. Malachi especially loves the animals and being able to get up close and personal to them.

The boys also got to do a little fishing with dad, a favorite past time from our early dating years. Of course Levi caught the first fish leading to some pretty jealous looks from Malachi. But by the end Malachi was able to snag two fish himself and that was enough to override his envy.

Jake and I celebrated our 15th anniversary this month. It doesn’t even feel like this same lifetime. I use this phrase often when I talk about my life but I say “It feels like a book I read once.” We have been through so many things together, and I am grateful that I am married to a man that loves God more than he loves me. Through that walk with the Lord we are each able to exemplify Christ to each other. We aren’t always shining examples of that, but God has been so gracious to us.

We are taking the month of July to regroup as a family and spend some focused time together. Levi’s surgery/Cincinnati trip is scheduled for the first two weeks in August.

There are so many times that I successfully “forget” Levi’s extensive medical history. He is doing so incredibly well! Last week I had a family message me that has a daughter sharing the same diagnosis as Levi. They were asking about the procedures that we did and as I typed out the brief summary of his early days my mind and emotions flashed back to some really hard times. And some really hard conversations. Those early days required a faith from us that was different than anything I had encountered with Malachi’s journey.

With Malachi I had to trust God as my last option. There was nothing else that I could do BUT trust God, as the circumstances and decisions were out of our control. Our faith was easy because it was all we had left to cling to.

But with Levi we had to make a conscious decision to trust God, choosing a path for him that went against doctor regulations. It wasn’t an easy decision and the “what if” game was incredible, and in ways it still is. I remember the agony of making each surgical decision and leaning so heavily into God each time he went through those operating room doors.

Faith is such a continual journey. And while I am thankful for the times it was an easy choice, I find myself equally thankful for the times that the easy faith was challenged. Without the testing of my faith my faith wouldn’t have experienced growth.

James 1:2-4 “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”

And closely related to that scripture is Romans 5:3-5 that says, “And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.”

We have watched God take a faith in us that was sustained by milk and call us to a diet of solids. Our faith is the only thing that has kept our marriage together. It is the only thing that has kept my family functioning. And my faith in God is the only thing that I can consistently rely on in my day to day challenges.

Faith isn’t a tool that is meant to be used like equipment for a hobby- coming out from the closet only when needed. It is meant to be a shield…something that we carry with us into battle each and every day.

It is easy to focus on the hard parts of the last decade. But my heart can help bit cling to the beautiful things we now get- precious gifts from the Lord that a typical journey may not have offered.

Please continue to pray for our family as we try to enjoy a few weeks of normal. The looming nature of an upcoming surgery always tends to threaten the here and now. Pray over Malachi’s whole body system, that he can settle back to his “normal” post-camp and get back to his smiley self. And thank you for taking time to check in on our family. It truly never ceases to amaze me thinking that complete strangers take the time to read about our chaos. Such a cool God thing to me.

Much love,

Leah