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

It’s Wish week! So many things to share with you…

On Monday around lunchtime we checked into Give Kids the World Village (GKTW). When we looked at photos online we thought it looked pretty fun, but photos did not do it justice. So let’s start out with a little bit about GKTW.

This all inclusive resort was founded in 1986 for families just like ours. They work with all wish organizations, not just Make-A-Wish, to create a safe and accessible environment for families to come relax. They have thought of everything, and I mean everything, to make the stay amazing.

The entire village is accessible including a playground, splash pad, pool, putt putt, arcade, rides (giant swing, butterfly ride, carousel, and train). They provide three meals a day from the buffet style cafeteria, snacks poolside (Icees, hot dogs, nachos, etc), a cookie cart that drives around and serves cookies/brownies and lemonade, and an ice cream parlor that opens at 7:30am. They have a spa where kids can get temporary tattoos and get their hair styled. They offer pony rides for all abilities. In addition to all these fun things, they also host parties at least once a day, each with a different theme. And I am sure I am missing so much more.

Here is a photo slideshow of some of our favorite photos at GWTK. You can click on the first photo and click through the photos. This seems to be the best route for the many photos in this post!

Our villa had two bedrooms, two baths, a washer and dryer, a full kitchen and living room area. The entire house was accessible and included a shower chair for Malachi. We could call for a shuttle to drive us anywhere if we were too tired to walk, and Malachi felt like a prince on his golf cart!

We could have been gifted a week at the village and been totally content and thrilled! They utilize over 1,800 volunteers a week and everyone is so excited to serve. It was truly a special experience.

Medical mom moment: I am going to insert these into this post to let you see some of the inner workings on my brain and heart. So medical mom moment #1. I had a very hard time for the first 24 hours at GKTW. I was struggling with some PTSD moments- flashbacks to being in the Ronald McDonald House- and that brewed a lot of emotions. It is easy to read what I just wrote and find undertones of ungratefulness in it, so please don’t misunderstand me! We are so incredibly thankful for organizations like Ronald McDonald House. But being in that environment means you have a very sick child that cannot be with you because they are in the hospital. And those feelings of helplessness are so, so strong. We have spent nearly 300 nights in Ronald McDonald Houses. Being in an environment where that same generosity was being displayed to our family bubbled up those emotions. I had to keep reminding myself that my family was together- that all four of us were healthy and together and I could relax and enjoy the blessing. Which was surprisingly hard for me to do.

Each day they stopped by our villa while we were out and left presents for the boys. We attended one of the Christmas parties at the Village and they both got to choose a Christmas present in June! They were spoiled and showered with goodies all week. Not to mention the unlimited ice cream sundaes, Malachi’s favorite! On the final day Malachi was in a terrible mood as we packed the car. I asked him if there was something he wanted to do before we left and he signed yes. We finally got to the bottom of it…he wanted ice cream one more time. After that he was all smiles as we said goodbye and hit the road.

GKTW has several corporate sponsorships worldwide and they are able to gift families not only a place to stay but tickets to several local attractions. We received 3 day tickets and park hoppers to Disney, 2 day tickets to Universal, and 1 to Sea World. They also include free VIP parking and badges at each one to identify us as a GKTW family that give us special privileges. For Disney that meant going into the lightning lanes and being brought to the front of character meet/greets. For Universal they brought us through the exit of each attraction to the front of the line immediately. The badges also gave us free photo packages and each one!

We allowed Malachi to dictate the entire week, giving him multiple choice lists to choose from. On Tuesday he chose to go to Magic Kingdom and ride some rides. There were several that he was able to stay in his chair on and they even let him stay on and ride it more than once on a few rides. Here is a slideshow of our time at Magic Kingdom! For our Disney loving friends we rode: Winnie the Pooh, Buzz Lightyear, Aladdin, Enchanted Tales with Belle, Little Mermaid, Jungle Cruise, and maybe one or two more that I am forgetting.

On the way home Malachi asked to eat at the T-Rex restaurant which has animatronic dinosaurs all over. He was so so so happy. We made sure to order food and drinks for Malachi everywhere we went and let him “pay” with our Make-A-Wish card that had an allowance on it for the week. Malachi can’t eat a whole lot, but we were usually able to find something with melted cheese or chocolate on the menu as well as a smoothie. He literally gained 5 pounds this week.

On Wednesday Malachi wanted to go Universal to meet some characters! We only spent 1.5 hours there but packed in so much. That was one of the most fantastic benefits of the week is that we never felt the pressure of needing to “get our money’s worth”. We did just the specific things we set out to do and then left. He met Spider-Man, Blu the velociraptor, a baby t-Rex, and got Spider-Man face paint. Here is the Universal slideshow.

Since we still had some energy, we let Malachi choose the next thing on his list and he picked Gatorland. They also are corporate sponsors for GKTW and give families free tickets! We stayed for an hour and Malachi got to hold an alligator, two snakes, and a tarantula! Here is the slideshow, but beware it will spook you out. Also note that mom is not in many of the photos.

Thursday was Malachi’s wish day! We had to check in at Discovery Cove at 7am so it was an early morning. Malachi’s excitement was so incredibly sweet to watch. He was giggling as we walked in so I took a quick video:

Side note- Levi was VERY jealous. He was not old enough to participate in the dolphin swim and struggled with emotions, which made Malachi even more dramatically hyped haha. You can see the jealousy brewing in each photo.

We were scheduled for a 10:00 dolphin swim so we ate some breakfast and headed to the aviary to feed the tropical birds. Then we got Malachi all ready for his dolphin swim.

The dolphin swim was done in a large group of 10 so we attended a brief class and headed down to the water. Malachi’s excitement was incredible. He was so excited it took him at least ten minutes to relax enough to open his hands and pet the dolphin. The encounter was 40 minutes long and after he relaxed he laughed and laughed and laughed. The trainers let each person pet the dolphins (we had two dolphins: Rose and Maddie) multiple times and demonstrated all kinds of cool tricks. Malachi’s favorite part was the noises they were trained to do. One of them did a t-Rex impression, they both screamed if you said “Boo”, and mimicked a fishing reel. One of them made a toot noise when signaled to do so, and so much more. When that part of the experience came Malachi lost his mind, laughing and squealing with joy. He also got kissed by the dolphin. Here is a photo slideshow, but it doesn’t even capture a fraction of his smiles and joy.

We spent a few more hours at the resort checking out some of the other experiences. And Levi was much happier after the dolphin encounter was officially over. We swam with the sting rays and the tropical fish, even having one giant one brush up against Malachi’s feet.

We were only able to last a few hours at the resort before the heat caught up with Malachi. We headed home to let him rest a bit then spent the evening at Medieval Times.

Ugh Medical Mom Moment #2. I have been avoiding thinking in depth about this one. Let’s talk about the emotions of dolphin day.

When Malachi chose his wish to swim with dolphins the coordinator at Make-A-Wish said that he would only be able to choose one parent to join the encounter. We let Malachi choose and he chose momma, which was so touching. I really wanted to give him a good experience, and didn’t trust my abilities to physically be able to be his arms and legs without supportive seating. I joined our local gym and started working out and lifting weights 3-4 days a week for the last two months to prepare my body.

I was SO anxious leading into dolphin day, praying that I would be able to help Malachi participate fully. The first thing we had to do was get from the meeting area to the water and I had to pull his wheelchair 50 yards in the sand to get him close to the water. By the time I finished that task I was already shaking with fatigue and I could feel hot tears welling up in my eyes as I lifted him out…just feeling so defeated. They had told me the experience was 40 minutes long and I was already so physically tired. They assigned a life guard to be a helper but truthfully she was not eager at all to help and I didn’t want any of her negative vibes to be felt by Malachi.

Supporting Malachi is already hard, but getting him in a safe position in the water while freeing up one hand to try to help him touch the dolphin was quite the challenge. Add in his intense excitement and he was contracting all of his muscles. I couldn’t get him to open his hands and I felt like such a failure. He had chosen me to do this special thing and I was failing him. All of the emotions were rising to the surface and I had to look away and let a few tears fall, trying to talk myself out of a total meltdown. After about 15 minutes Malachi finally relaxed enough for us to interact with the dolphin and his joy made allowed me to completely ignore all of my shaking muscles and pull some extra energy from God. Hearing his laughter and watching him touch the dolphin with such intentional movements was amazing to see.

One of the underlying emotions of any medical mom is always feeling like we are failing our child. We are given circumstances beyond our control and our BEST is still not enough. I am so thankful that the Lord stepped in and helped make that experience an amazing one for Malachi, despite my inadequacies.

Friday was our final full day so we asked Malachi to tell us what he still had on his list. He chose to go back to Disney, this time Hollywood Studios to see some shows and ride a few rides. We watched Beauty and the Beat live on stage and attended the Frozen show where he was seated front and center. Then we spent some time riding rides in Toy Story Land. Against our better judgment we tried a real rollercoaster with the boys called Slinky Dog Dash. This coaster was INTENSE, even going sideways. We didn’t realize how intense it was on round 1. I sat Malachi beside me and held on tight to him, regretting our choice to ride within the first 10 seconds. But as it ended and we sat him back in his chair he immediately signed MORE MORE MORE! That was the first time he had done that all week so we knew we needed to ride it again. I think we have a thrill seeker on our hands!

We ate at the Rainforest Cafe for dinner, one of Malachi’s favorite restaurants. The only thing left on Malachi’s list was getting splashed by a whale at Sea World. The final orca show was at 8:15 so we arrived at 7:00 and got him front row seats with dad. His smiles were so huge before and after the splash. It was the perfect ending to the week!

That night I talked to Malachi about his week and asked if he was happy with all of his choices. This was the smile he gave me…

This week was such a gift to all of us. We had a week that was free of appointments, financial worries, medical drama, and saying “no”. We didn’t have to fight to give him opportunities at normalcy- it was gifted to us in abundance. This trip was so much more than anything we could have imagined, and we are so thankful for the memories we will cherish for a lifetime.

I am most definitely missing some great stories from the week but my brain is maxed out. So some final thoughts….

What I didn’t realize when we scheduled this trip was that it would fall on the same week that we brought our Malachi home from the hospital in 2013. In so many ways we are the same- but in so many ways we have been profoundly and beautifully changed by our Malachi in the best ways. Every day with him is a gift. And life with him has been a blessing that I wouldn’t have been able to imagine a decade ago.

Thank you, God, for the gift of Malachi. And thank you for your perfect will, even when it is vastly different than mine.

Much love,

Leah