As I sit here and reflect on the last 4 weeks, it is almost unbelievable how many things we have had on the calendar…and how many surprise things were not on the calendar but needed to get accomplished. It has been a very busy month for our family.

We ended up taking several unexpected trips to Ohio, with at least one of us going up 4 out of the last 5 weeks. The boys and I made the trip solo for 2 of those; traveling with the kids is always a bit complicated- meds, tubes, backup emergency medical supplies, etc- but doing it solo adds a whole new level of thinking.

For example, at home we use a very specific pillow with Malachi. He often has seizures when he sleeps and his head always turns sharply one direction during a seizure and stays locked in that position until the seizure ends. If he has a pillow that is too plush (like the ones in the photo below) he can easily suffocate during one of these seizures. We could pack our own pillow, but when I am traveling alone with both boys multiple trips back and forth to the car for all the things are not ideal with the wheelchair. So we try to pack minimally and hope the pillows are decent.

Malachi also has to be at a very specific angle to be able to release air from his belly and has to stay partially upright after a feed. When we are in a hotel we do the best we can to recreate his home chairs but it is never ideal. Increased pressure in his belly leads to more seizures so it almost feels like a ticking time bomb when we can’t get him positioned correctly.

Malachi also has a neurogenic bladder, which means he has lost the ability to urinate on his own unsupported. I won’t go into the details of that, but he will keep his urine in his bladder until I am able to assist him. When we are traveling there really isn’t a place on the road to change him successfully so he ends up having to hold his urine until I can get to a hotel. I know it sounds irrational, but I almost feel guilty every time I pull over to find a restroom for Levi or myself knowing that he is probably uncomfortable too.

Levi has been improving with his road rage, although it does lay dormant just below the surface haha. This last trip he got so irritated with traffic paired with Malachi not holding his head up, and when Malachi realized Levi was annoyed with him he kept dramatically doing it over and over again to make him more mad. It worked like a charm and listening to Levi bicker with Malachi in the back seat (and Malachi grinning from ear to ear at his annoyance) made me smile. At one moment I looked in the mirror and Levi was so mad that he pinched Malachi’s nose shut in anger. Obviously, I corrected him…but as crazy as it sounds, those typical moments are a true gift to me.

Back in Tennessee we have been in constant motion. Our friends hosted their 6th annual “Holy Ghost Wiener Roast” at the farm, an event we help with each year. This year we had over 1,900 people there!

The boys served alongside me, greeting each car and helping where they could. Levi was able to jump in a car with some friends and go enjoy the festivities.

Every year we rent a mechanical bull for the event and Levi told me later he was too anxious to ride it. I figured it was because it would throw him off, but the more I questioned him he explained that it was because he was afraid it might pull out his g-tube, which is a huge fear for him. It made me a little sad to see the disappointment on his face, and afterwards he kept asking when he could take the tube out permanently. He has not been doing well with swallowing pills so for now the tube is still needed for medications, but I am happy to see him maintaining a healthy weight without the nighttime formula feeds.

Levi turns 9 years old this week! I will save the sappy sentiments for the next post along with some birthday photos. But what a 9 years it has been!

Malachi was finally cleared from his hip surgery to restart hippotherapy. He was so happy to be on the horse, and then so angry and so disappointed when he wasn’t allowed to trot. The therapist wanted to ease him into it, and promised him that he would get the chance next session. Malachi stayed mad at her for at least 15 minutes then finally signed that he forgave her.

Malachi also discovered a love for claw machines. We found one that was a “play until you win” (shhhh don’t tell Malachi) and with each prize his excitement grew. Seeing his big smile was so fun. He kept signing “more” and I gladly obliged, thrilled that we had found something for him to be included in while brother was in the indoor playground.

Our trips to Ohio haven’t been for leisure reasons, as we have many loved ones going some hard things. We are not strangers to difficult things, but Levi is at an age where he more aware and in tune with what is happening around him.

One night in Ohio he started crying in the back seat and angrily shouted “Why did we have to come here and see all these people suffering?!” I took a deep breath and before I could answer he rose his voice even louder to shout “AND I’M AN EMPATH!!!” At that point I couldn’t help but smile, as I asked him if he knew what that word meant. He said that he didn’t so I defined it and he said in dramatic tone through his tears, “Yes, I’m an empath.”

Over this past month I have been revisiting a story in Acts 16. Paul and Silas had been led by God to Philippi where they were performing miracles and spreading the gospel of Jesus Christ. The chief magistrates in the city arrested them for “throwing our city into confusion” (vs 20) amongst other charges and these servants of God were beaten and thrown into prison with their feet in stocks.

And in that dark prison the Bible tells us, “But about midnight Paul and Silas were praying and singing hymns of praise to God, and the prisoners were listening to them”.

An earthquake came that shook the prison and all the doors to the prison opened up and the chains on the men fell off. The guard, who had fallen asleep, woke up and prepared to kill himself as he assumed all of the prisoners had escaped. But Paul called out to him and reassured him that they had all remained.

The guard fell down trembling and asked the men what he must do to be saved.

“They said, “Believe in the Lord Jesus, and you will be saved, you and your household.” And they spoke the word of God to him together with all who were in his house. And he took them that very hour of the night and washed their wounds, and immediately he was baptized, he and all his household. And he brought them into his house and set food before them, and was overjoyed, since he had become a believer in God together with his whole household.” -Acts 16:31-34

Why didn’t those men run when the gates of the prison burst open? Clearly for the gates to be opened and the chains to be broken, God must have been involved! So why would they choose to stay in that pit?

The longer I let this story simmer the more personal it felt. Sometimes our family finds ourselves in situations that feel a lot like a prison. We feel persecuted, restricted, and punished. So how do we cultivate a heart like Paul and Silas that choose to stay put even when the chains are loosed and the doors fling wide.

Sometimes the prisons we are called to be in aren’t a place that we need to be “freed” from, but rather they are exactly where God places us for His purposes and His glory. The pit can often be the chosen mission field assignment from God. The earthquakes that break the prison doors are about God revealing Himself and not always about us fleeing.

About two weeks ago we had a stranger approach the kids and I and ask if he could pray for Malachi. This happens often, and I have yet to turn someone away from such a kind gesture, but if I am being honest with you I often have a tinge of hesitation as we have had some well meaning strangers over the years really cause hurt and confusion in my children with their word choices during their prayers.

I made sure to explain to the man that Malachi understands everything and asked Malachi’s permission to which he signed “yes”. The man prayed for Malachi’s brokenness and that he be made whole. He then asked if he could pray for Levi and Levi with teary eyes said “No thank you”, which the man respected and went on his way.

After we left I started answering the questions Levi had about the encounter. He wanted to know why so many people approach us and ask to pray for Malachi. And at that moment I realized why God had focused my heart on this story.

I explained to Levi that some people look at Malachi and our family and see sadness and broken things that need to be fixed by God. They feel like the hard things we go through are like a prison that we need God to free us from.

But the reality is that if the earthquake hits and those gates fly open, sitting right where we are at and praising God through it is exactly where our family would choose to be. Because our faith and our contentment is not determined by our circumstance and environment. It is found in resting in the presence of God and embracing whatever purposes He calls our family to. And sometimes the most fragile audiences that need a Savior can be found in the prisons we have been placed in.

So while we still pray for healing and miracles in our family, we also recognize the testimony that comes with praising God in the hard seasons we are called to walk through. There are times we are called to soar on wings like eagles and there are times we are called to rest in the cleft of the rock, asked to listen for the quiet whisper of God to guide us to the next leg of the journey that He has prepared.

Please continue to pray for our family as we walk through new seasons and navigate new things. And thank you for checking in!

Sincerely,

Leah