We ended the month of March with much needed family getaway! The break allowed us to feel “normal” for a week, free from medical appointments, insurance battles, and phone calls. It was a needed moment to breathe for all of us.

We used Malachi’s Make-a-Wish passport and packed our days with adventures. I will include a few photos, but this video does a pretty decent job summarizing our adventures:

Malachi chose most of our activities and we learned quickly that he wouldn’t be allowed to do all the things he had put on his list. Many of the places we contacted had liability worries about him participating so we had to navigate that delicately to avoid major disappointments. He wanted to ice skate but the facility wouldn’t let his wheelchair on the ice. He wanted to ride rides but they required the ability to sit independently. There were a surprising amount of “no”s this trip.

But there were also an incredible amount of surprise blessings. So we chose to focus on those!

There is also something else we have been really trying to consider…should we be giving Levi experiences that his brother can’t participate in? Navigating this one was delicate this trip. But sweet little Levi was very aware of his brother missing out and brought tears to my eyes one afternoon. We had received wristbands for “the Island”, an outdoor area with several rides that we could do for free. We passed a trampoline jumping area and I asked Levi “Would you like to do this? It looks like fun and there is no line!”

Levi: “Can Malachi do this one?”

Me: “He isn’t able to do this one but I think you would really enjoy it!”

Levi: “That’s okay, I don’t want Malachi to feel sad.”

Finding the most appropriate way to parent in our world is very hard and situational. And I am confident we don’t always get it right. But watching Levi’s character grow is so special.

So focusing on the “yes”s….

We did alllllll the shows (Stampede, Hatfileds/McCoys, Magic, Comedy Barn). We swam in the wave pool and lazy river. We went to the Titanic Museum, WonderWorks, Magiquests, and so many other fun stops. We flew in a helicopter, rode go-cats, and battled in bumper cars on and off of the ice.

We had lots of medical moments in the mix, but we charged through. The very first night Levi’s feeding pump tube came out of his extension and we “fed the bed”, meaning the 26 ounces of formula that was meant to go into Levi’s tummy went into the hotel bed/mattress instead. Thankfully the hotel had waterproof pads on their beds and we had a washer and dryer in the unit that was the MVP of the morning.

Navigating Malachi’s seizures in public is always a bit tricky and brings about some anxiety. When we enter a place we mentally mark a safe space for us to run to when he has a seizure. But we also try very hard to preserve his dignity in those moments and not make a spectacle of it; many times that means we have to wait for the seizure to end before we take him to a different location to vent him, as walking him by crowds mid-seizure wouldn’t be respectful to him. But there were many places this week that didn’t have a place to run to that was free from the crowds and that situation always elevates our stress levels a bit.

But oh how the trip was worth it!! Seeing the joy on both of their faces was so special. And these medical moments were just drops here and there on a relatively normal week! Malachi loved the opportunity to have choices and make decisions for the family. And we were able to do so many things that we would not have been able to afford to do.

We are so thankful to Make-A-Wish for these special “extras” and also thankful for friends that were generous enough to offer us a week in a condo.

I found myself being extremely sentimental this week. March is the month of many surgeries for Malachi over the last 11 years…his first brain surgery, his g-tube getting placed, and so many others.

Six years ago in March we underwent some life changing and desperate surgeries with Levi. And March also marks the month we got to bring Levi home after 5 long months in the NICU.

March the following year was when we took our first every family trip, and interestingly enough it was to Pigeon Forge. I remember having to do the math to make sure we had packed enough oxygen tanks, tube supplies, and medical EVERYTHING to keep us functioning safely.

And here we are…many March’s later. Things are still complicated, things are still messy, there is still a lot of math involved, but WOW what a testimony God has written in our family.

Psalm 37:24-26 “The Lord makes firm the steps of the one who delights in Him; though he may stumble, he will not fall, for the Lord upholds him with His right hand. I was young and now I am old, yet I have never seen the righteous forsaken or their children begging bread. They are always generous and lend freely; their children will be a blessing.”

Oftentimes my memories can be really difficult things to reflect on. But this week I find myself thinking back on some really hard seasons for our family and being able to see the very present hand of the Lord through every season.

He has never forsaken us. And He has been Jehovah-Jireh (the Lord will provide) through every leg of our journey. He has been the fourth man in the furnace with us and continues to guide us through terrains we aren’t equipped to navigate apart from Him.

This week I am increasingly grateful for the testimony He is writing through our family. Some weeks that is a hard sentence to say. But this week I am overwhelmed by God’s providence. And I am thankful for special weeks like this one that help me forget the cloudier days.

Much love,

Leah