Be Still.

Family Vacation, May 2019

We’ve taken some pretty epic road trips in our marriage. We’ve driven from Florida to South Carolina about 500 times. Then that one time we drove from Cuba to Russia…just kidding, it was only Homestead, FL to Anchorage, AK! Our kids are the best at traveling in the car and definitely will do anything if it involves visiting family! We had just bought and renovated a house and plane tickets were out of the question so we loaded up the kids for our first road trip from Ohio to Florida!

First stop, Atlanta! We hadn’t seen my brother and his kiddos since LJ’s Make-A-Wish trip in March 2018. It had been over a year and we were excited to spend some time with them! We went to a playground, a few restaurants, and a few bookstores with our pair of bookworms, Emmaleigh and Ava. It was nice to just be still with them. Every time we are together it is usually for something and there is a schedule and pressure, this visit was so much different! We also had a delicious dinner with Theresa, Ava’s wonderful mom, and Mike, Joshua’s uncle. 

We left Atlanta and drove straight to the LegoLand Beach Retreat! First stop was the Florida welcome center, our little Florida girl was so excited to be back in her home state! We did the usual, grabbed some orange juice and ALL the travel brochures. Please tell me I’m not the only parent that feels so guilty throwing them away at the next rest area because the kids have lost interest.

LJ spotted the beach bungalows from the main highway and he was so excited that HE found where we were staying! We walked in to the most adorable lego decorated mini suite, unloaded the car and went to a beach party! Emmaleigh of course darted for the pool and LJ played corn hole with Daddy! I sat still for a moment just soaking up the fact that we had made it!! We were able to take LJ to LegoLand!

We woke up the next morning and ate a delicious gluten free breakfast with a side of chemotherapy! One day I’ll make a list of all the places LJ has taken his medicine! We went to LegoLand as soon as we could, everyone was so excited for a new park!

We went to the new Lego movie section first then worked our way slowly through the quiet theme park. It definitely wasn’t the Disney World speed that we are used to. Em rode rides alone (purely because she wanted too), they got driver licenses made, and traded mini figures!

We watched the awesome water show where Lego guys water ski in bulky costumes!

We all enjoyed GF pizza and got the song that plays outside the place stuck in our heads for the entire summer. “Nice and TASSSTTYYYY!!!”

We rode a double decker carousel and ate apple fries that were naturally gluten free!

We left the park and hopped over to the LegoLand hotel to see what all the fuss was about over there! Its really is right outside the park and has it’s own security entrance to get into the park. LJ was tired, he had a full day at the park and while I was trying to get a cute picture of him laying in a pile of legos his eye kept turning in. This is a really prevalent symptom in DIPG tumors and every time we see it our hearts drop. We start to wonder if the tumor is progressing and honestly your mind can go down some pretty dark, yet relevant, rabbit holes fairly quickly. LJ’s eyes, both of them, do turn in sometimes mainly when he is tired. But so far they have always returned to normal and they did this time, but they did act funny for almost the entire trip.

Back at the resort and LJ wanted to get in the pool, clothes and all, we of course let him! They had a PJ dance party too!

We got up the next morning and headed back to the park! We were able to visit the adorable Lego Duplo section, do all of our favorites again, and visit the water park!

After a full day at the park we were able to have dinner with the most incredible family. The Norton’s. This family found us at the beginning of our journey with DIPG and have loved, supported, and prayed for us the entire way. It was such a joy to meet perfect strangers that loved us so much. We look forward to future trips to Florida and meeting up with this wonderful family. They are a light in this dark world and truly remind us that there is goodness in all situations. 

The next morning we woke up with the BIGGEST surprise for Emmaleigh! We were going to see Winter and Hope from the movie Dolphin Tail. We went to breakfast and I saw Meredith from That’s Inappropriate and I said to myself, “oh that’s cool!” Then Joshua tells me that he saw “the lady from the facebook videos I’m always watching” and I turned to see Tiffany Jenkins from Juggling the Jenkins! I was so excited and for sure star struck! Her realness and her overcoming of addiction have made me a big fan of hers for a long time! I awkwardly asked for a picture with her while looking like a complete homeless person but hey! Isn’t that what most of her vlog is about anyways!?

We drove over to beautiful Clearwater, Florida to the Clearwater Marine Aquarium! Emmaleigh was a bit star struck too when she saw Winter! We fed stingrays, were soaked by Nicholas, and Em epically failed at making slime! But before we left we decided to surprise her and sign her up to feed a dolphin! She almost was able to feed Hope, got down on the platform and everything but Hope wouldn’t participate, so she got to feed friendly Nicholas instead! It was a dream come true for her and her smile made it all worth it! 

We left Clearwater and headed HOME!!! And by home I mean Disney World! We stayed at a bucket list resort, Disney’s Port Orleans French Quarter! Home of the gluten free beignets and an amazing pool! We dropped our stuff and headed to the super crowded food court (it was pretty late and everyone was coming in from the parks clearly starving), got our food, and went to eat by the pool!

The next morning we woke up and headed to the Polynesian for breakfast at Ohana’s! We couldn’t be this close to Disney and not see the Mouse! 

We tried to recreate the cutest picture we have of our kids!

Enjoyed the amazing breakfast! With gluten free surprises from Erin McKenna’s!

The kid’s got to squeeze some charcters, which has always been their favorite thing to do at Disney!

We also did some pin trading, a loop on the monorail, and Em somehow got big enough to use the adult sinks comfortably…

The rest of the day we enjoyed our first trip to SeaWorld! We visited the new Sesame Street area, the Orca show from the front row (thank you Make-A-Wish), ate an epic dole whip, and spent way too much time in front of the Dolphin Nursery!

We loaded our kids back up and drove them to the greatest surprise!! Deanna had drove from Homestead to meet us at the McDonnough’s in Jacksonville. It was so great to have our kiddos together again but who am I kidding, it was THE BEST to be with my best friends again! We let them stay up way too late, went to church, and watched them play in the pool! It was short visit but it was only for fun and for us that is a HUGE deal! 

We headed home, for real this time, with one more stop in Atlanta!

We are so grateful for the opportunity to vacation like we do. We really love and value making memories on these types of mega trips with our children. I can’t pretend like every step of the way I’m not thinking about LJ’s diagnosis. Everything we do the thought of “this could be his last time” quickly crosses my mind. I’ve gotten pretty good at moving away from those thoughts just as quickly and try to be present and grateful for the moment we are in, not the past and definitely not the future. DIPG sucks, there is no doubt about it but the lesson of being in the present always is a valuable one that I am thankful to be learning! Be still.

“Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!”

Psalm 46:10

2 thoughts on “Be Still.

  1. I admire y’all so much for the strength y’all have shown throughout this entire journey! The love and passion y’all show for life and your kids is amazing and humbling. I know we don’t talk much, but I love and pray for y’all all the time ❤


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