I am going a bit cross eyed staring at the screen tonight so please ignore my grammar errors and crazy thought trails. We just pulled in the driveway after an adventure filled trip to Ohio!

Sickness in our small town is so rampant that they closed the school system last Monday. With this bit of information and an upcoming trip we decided to hunker down and try to dodge germs. I kept the boys at the house most of the week, even canceling therapies as the boys weren’t 100% yet. Our lock down paid off and on Thursday the kids and I headed north. Jake had to work and we do all that we can to preserve his days off for long term hospital stays and surgeries.

But we did get haircuts for the boys. They were long overdue, so I did a before and after for you.

Both of the boys were giddy with excitement as we pulled onto the highway for the 6 hour drive! When we finally made it to Skyline Chili (one of our favorite hometown restaurants) Malachi and Levi were all smiles, knowing we were almost to our destination.

As we passed the hospital I used the moment as an opportunity to remind Levi that not all Ohio trips equal surgery. Here is how that conversation went.

Me: “Wave to the hospital Levi! You don’t have to have any surgeries this trip!”

Levi: “Will my surgeons be sad that they won’t see me?”

Me: “No, they have other little kids that they will be helping.”

Levi: “I feel so sad for those other little kids that have to have surgery.”

Sweet little boy. Such empathy for others.

If I am being honest, I was pretty anxious about this trip. Knowing that there was a great potential that we could arrive in Ohio and then manifest some crazy sickness made me pack a bit differently. I loaded up lots of worst case scenario machines (oxygen concentrator, pulse ox, etc) just in case. Thinking through all of the smaller items that need to also be packed can get overwhelming…tape, cannulas, sensor strips, gtube extensions, formulas, feeding bags, ice packs, bottles, medications, syringes, diapers, and so much more. And so many of our things are specialized so running by the store to pick up what we forget just isn’t an option.

We arrived around bedtime Thursday night and tried to get settled. My dad has a guest room in his basement that is set up perfectly for a special needs situation; there is a sink and a fridge in the room off the guest room. I started by stripping the bed and putting a waterproof picnic blanket underneath in case we had a feeding tube incident, which sure enough we did! That night I fed the bed (the formula poured out of the sides of the extension instead of making it into his belly, but thankfully the waterproof blanket kept it from ruining their mattress.

Our days were filled with lots of family visits. Both Jake and I are originally from Ohio and most of our family has remained there. So we were able to visit all parents, grandparents, great grandparents, several cousins, and so many more thanks to my cousin’s wedding on Saturday!

Levi is so impressed that great-grandma has an elevator in her house (assisted living facility).

Both boys did so well at the wedding, staying polite and quiet during the ceremony and adapting well in the reception. The music started and Malachi started to get a bit uncomfortable and we knew it was time to quietly step out. His little brain was on overload and usually that leads to a large seizure.

Malachi was caught off guard by how many people at the wedding knew him. It was held at a church that fervently prays for Malachi so several people came up to him saying “Is THAT Malachi?” Watching his little grin made me so happy. He felt like a celebrity.

They loved the idea that they were my wedding dates for the night. It was the first time they have been to a wedding and Levi’s narrative made me smile. He kept asking “Is it time for the wedding yet?” All throughout the ceremony. On that note, the concept of a wedding is hard to explain to a child haha. Malachi did great through most of the night but started to get a little overstimulated after a few hours so we had to sneak out.

Little Levi turns 5 years old today (Monday)! He woke up around 3am singing “Happy birthday to me” then drifted back off to sleep. While we were in Ohio he was able to celebrate with family. Jake and I don’t do formal traditions for birthdays so even the concept of blowing out a candle was new to him.

He also got to try a donut for the first time! And Malachi got to try tasting snow after a surprise dusting.

Our trip was wonderful and we all had such a nice time seeing faces we hadn’t seen in a long time.

It also was a reminder for me in many ways about the reality of the limitations our world is going to bring in the near future. Lifting Malachi up and down for four days solo took a toll on my body. The bigger he gets the more difficult adventures like these become. It also was a reminder about how limited we are by medical schedules. All of our adventures had to be planned around feeds and medication times.

These thoughts spiral me into a sense of mourning, knowing that Malachi absolutely loves these adventures but my ability to provide him with these trips is limited. Malachi was a rockstar, trying so hard to keep things easy on me. He has the ability to hold his bladder and his poop (something we discovered this year in the process of potty training Levi) so before we go into an environment that will be hard to change a diaper in I ask him to empty himself so he can hold it.

Romans 8:18-21;24-25 “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. For the creation waits in eager expectation for the children of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God….For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.”

If I am being perfectly honest, the reality checks from this weekend spurred some unexpected grief in my soul. Whenever that spark hits my lens in which I view everything follows the flame and tries to take over my mind. I had one moment this weekend where the frustration of reality caught up with me and I felt my eyes fill with tears. In our world in Tennessee we are able to feel like our day to day is normal. But when I am in new environments surrounded by typical it highlights how abnormal and complicated our world truly is. I don’t know how to explain it. It is almost like the typical reminds me of what we have truly lost…things I didn’t even know to mourn over are now brought to light.

In that moment I prayed for God’s peace and He immediately reminded me of the word “hope”.

As hard as this life and calling is, we have been given a gift of anticipation and hope in measures that others don’t get. The things that others celebrate here on earth we will have the treasured gift of celebrating in heaven with our Creator. This verse above talks about waiting in eager expectation and I can absolutely assure you that I am in that camp!

And this verse about creation being “subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.”

Wow. What a powerful verse and a much needed remind about the role of hope in faith. And how important patience is in our walk with the Lord.

Thank you God for the gift of hope. It is the fuel that kept me going this weekend as I thought about all the many “firsts” my Malachi has to look forward to in heaven. And I am thankful for an imagination that let’s me picture that sweet smile on his face as he stands boldly at the throne of God.

Much love,


3 thoughts on “Hope

  1. Sounds like such a blessed weekend! So thankful you were able to provide those beautiful memories for your boys and your family. I know you felt the love. God is near…always. I hope and pray for the supernatural rest of God to fill your heart, mind, and body this week.


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