Tomorrow (Monday) is g-tube surgery day for our sweet Malachi. And I am just so sick to my stomach over it for several reasons:

1. Malachi is SO much more cognitively aware than he has ever been. In fact, his last surgery was in 2016 so he likely doesn’t remember the routine of things. I have been trying to explain to him about having to be carried away from momma by the nurses and how when he wakes up he is going to be sad and cry really hard. I told him his tummy will hurt for a little bit but will start to feel better after a few days. And momma will be there to play music and snuggle him when he wakes up. I have explained how we will have to stay a few nights in the hospital and won’t be able to leave the room and go on adventures. I am trying to prepare him as best as I can but this is going to be very hard for him this time around on a cognitive level.
2. This will be my first night away from Levi, with the exception of the two nights after he was born and taken to a different hospital. I have full confidence in Jake but just love that little boy so much.
3. I am struggling with some major PTSD right now. This is surgery #34 for this momma, and I have been alone for nearly 18 of those. Tomorrow I will be flying solo as it really isn’t in Levi’s best interest to bring him to a hospital unnecessarily where he can contract something new. I can definitely handle things alone, but surgery days are emotionally hard. (Don’t read that as a plea for company…I am confident I can’t handle company during these waiting times. I have tried before and it somehow makes things worse.)

I have probably hugged Malachi 100 times in the last 24 hours. I love that boy so much. Every ounce of me wishes I could take this pain from him.

The g-tube part doesn’t phase us as Levi already has one. We know how they work and what they look like so they don’t intimidate us, but we still wish he didn’t have to have one.

While this surgery isn’t “medically necessary” right now we know that it needs to happen to help him recover from his hip and foot surgery next month. We always knew the time would come for the tube to go in but wanted to prolong it as long as possible. I would say 5 years is a pretty great accomplishment…go Malachi!

Both boys are doing wonderful with feeding therapy and today Malachi knocked our socks off at lunch by eating several bites of my chicken casserole. He kept signing for more and enjoyed every bite without choking or gagging.

Let’s talk about this crazy week we just had…

As I told you last week, our soccer team had the unique and wonderful opportunity to play at the state tournament. Jake left with the girls on Tuesday and the boys and I followed on Wednesday, making it there just in time for warm ups. Some wonderful friends from church offered to drive over (2.5 hours) and sit with the boys on the sidelines for the duration of the game so I could enjoy being just “coach”. What a blessing that was for me.

After 78 minutes of a competitive match, our girl’s knocked in the ball (with just over a minute on the clock) winning the game! We were overwhelmed and speechless. The last time a team from our tiny little town went to state and won a match in ANY team sport was in 1983. We have 19 girl’s on our roster…every girl that tried out made the team as we don’t have a huge group to pull from. Most of the other schools represented in the state tournament were private schools or came from the suburbs of large cities (like Nashville and Chattanooga).

This photo speak volumes:

And here is a video of one of the two goals from that game if you are a soccer enthusiast. Both of our goals were headers, which is rare and fun:

 

The girls were scheduled to play the following day (Thursday) so we headed back to the hotel. The next morning Levi woke up screaming like a wild man and when he couldn’t be consoled we wondered if something was wrong. We put him in the stroller and went down to the lobby and he immediately stopped crying; we assumed waking up in a strange place may have frightened him. But as the afternoon went on his screaming would randomly continue and he would get so worked up he would vomit.

I was running on very minimal sleep and since we didn’t have an oxygen concentrator I was limited to moving within 5 feet of the big tank in the room. Not an ideal situation for soothing him. When it came time to head to the game with the girls I made the very hard decision to take the boys back home instead.

I was so incredibly disappointed. I know it sounds silly, but I cried most of the way home over missing this game. We love those girls so much and I wanted to be there and experience this moment with them. Our team ended up finishing 3rd in the state!

We made it home late Thursday night and I raced the boys and the necessary gear in, watching intently for our bear friend to make sure he wasn’t sneaking back onto the porch. As soon as we got into the house Levi started laughing hysterically- he was so happy to be home. But he was up and down most of the night and started running a fever of 101.

The next day I decided to take Levi to the doctor. I battled this decision fiercely…I was pretty confident that he had an ear infection only, and exposing him AND Malachi (who was getting ready to have surgery) to a doctors office seemed like a bad idea. But I had no other options so to the doc we went. I called ahead and worked out the plan to wait in the car with the boys until the doctor was ready to see Levi. They were going to clean out a back room that hadn’t been used by any kids that day and put us in it, attempting to eliminate any unnecessary germs.

Great plan…until the receptionist that was going to call us left for the day and didn’t pass the message along. I have a knack for being pesky and didn’t want to annoy them so I tried very patiently to wait. I have been trying to work lately on giving grace, as that is a struggle sometimes. Levi napped and Malachi and I sat in the front seat and played. Levi woke up and started screaming again so I decided to check in (it had been almost an hour). When I realized I had been forgotten I started to get very emotional…those floodgates are pretty weak these days and the lack of sleep didn’t help. They got us in immediately and the doctor verified that it was an ear infection. After starting on some antibiotics, Levi is now back to his happy and chipper self.

And just as predicted, he has learned how to rock the car seat so hard it gets stuck upside down (not completely, just propped with his feet dangling over his head).

Back to soccer…

Jake and I have been completely humbled that the girls have achieved such a big goal. At the beginning of the season we asked them what their vision was and they said they wanted to go to state. We told them we would do everything in our power to help prepare them and make that happen and they did it!

There were several moments during the game that I would look over to Jake and find that he had disappeared off to the side out of sight. He would be down on his knees with his hands raised in the air, clearly praying. I know Jake well enough to know that he wasn’t pleading to God for a victory, but later I asked him what that was all about. He explained that lately God has been telling him “Honor me in this moment”, and each time God speaks it, Jake immediately obeys.

You may not know this about Jake but he is incredibly competitive. God knows our hearts, and I think God speaking those words to Jake during game times is no accident. He wants Jake to remember that even in the little things, the everyday mundane, we are to honor Him. Or maybe those moments of Jake on his knees honoring God were for someone else there…a reporter standing off to the side, a player on the field, a mom on the sidelines. God’s ways are mysterious, but when He speaks we should always desire to obey, even when those moments could feel out of place and embarrassing.

I am thankful for Jake’s obedience. And I am thankful for his walk with the Lord. He offered an optional Bible study at the hotel for the girls and almost all of them came down for it. We always talk to each other about the special calling God has placed on our family. We may not be harvesters for the kingdom of God but we recognize the role God has called us to as seed planters.

A neat side story- the coach of the team we played on Wednesday left this message on last week’s blog:

Hi Jake and Leah. Congratulations on the win last night! Your PCHS girls played some inspired soccer and were fun to watch. Cool story: I coach the Grace Christian girls and yesterday afternoon as we were preparing for the game one of our moms sent a link to your blog to my wife. I was in the midst of my typical pre-game angst and asking God what he wanted me to share with the team as we prepared to play. She sent me the link with the caption “Some perspective…” I was so moved reading about your journey; I shared the blog with our girls as our pre-game devotional and talked about how there are no coincidences with God. We often have no idea what He’s doing and He connects us with people and stories for reasons only He knows. All that to say, although our girls are devastated by the result last night, you have some new prayer warriors praying for you and Jake and Malachi and Levi in Franklin, TN. As a team, we’ll continue to pray for you, your family and your work there in Polk County. And good luck to you and your girls today! Go ahead and win this thing!!

This kind note humbled us even more as we watched God do His thing! Last week after I typed the blog I turned to Jake and said “Well, that wasn’t a very good entry but I am just too exhausted to think.” But God. He can take what we see as broken and messy and turn it into a beautiful thing to someone else’s eyes. Like that coach said, we often have no idea what He is doing and there are no coincidences.

I have personally been having a rough few days. It may be pre-surgery nerves, it could be the continual sleep deprivation, it could be the devastation of not getting to stay for the final soccer game…there are several culprits, but regardless the feelings are there.

I have been focused on a verse this weekend from Romans 12 that says “Be devoted to one another in love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer.” I keep reading it over and over, processing each command.

Honor one another above yourselves. This part has been challenging me and consuming my thoughts. It is similar to the golden rule, “Do unto others as you would have them do unto you”, but is an even greater challenge to honor them ABOVE yourself. Yikes! That is a tough thing to do.

In my crazy life this command towards my children is not a hard thing to follow, which I think most moms would agree is true for their children as well. I HAVE to put their needs above my own. They can’t do anything on their own so it falls to me to do. But what about my marriage with Jake? That takes some conscious effort to apply the command there.

I am going to tell you a story, but I don’t want this to be taken the wrong way. Jake and I are happily married and to give the illusion otherwise would be inaccurate. We praise God daily for the strong marriage He has formed between Jake and I; the statistics show that the divorce rate for special needs parents is 80%. We recognize we are an anomaly, and work hard to stay on the good side of that statistic.

That being said, here goes…

I was a frazzled, and as we say in the south, “hot mess” when Friday rolled around. I had driven over 300 miles alone with one epileptic special needs child and one screaming ear infection ridden baby. I was having to pull over at rest stops to make sure everyone was staying hydrated, medicated, and poopy free. I was running on 3 hours of sleep, spending 7 hours that night rocking each of my children in my arms. I missed at least two meals a day, some days not eating until 9pm.

Jake came home Friday afternoon and I was so thrilled to have reinforcements. He helped me get the kids ready for bed; Malachi has to be held upright as he falls asleep or he has major seizures, so Jake took on that role and when he was asleep carried him to bed. Levi was wide awake and has been staying up until around 1am. After Jake laid Malachi down he disappeared. I assumed he was reading his devotional or unpacking his suitcase but after several minutes of silence I went looking for him. He had gone to bed. And boy was I jealous. And then boy was I a little mad. And then boy was I furious. He had just spent 3 nights alone in a comfy and quiet hotel room, getting 10+ hours of uninterrupted sleep, and I was the one staying awake with the wild child.

As women often do, the more I processed the more frustrated I became. I secretly wanted to dump a pitcher of cold water on his sleeping face, but refrained. I started thinking, why is it that I put everyone else’s needs above mine but no one will do the same for me? Why am I not a priority to others? I thought about the verse “Honor one another above yourselves” and got mad at Jake for not doing that for me.

A few hours later I went to bed, still extremely bitter at Jake. I looked up that verse again to read it, but this time I kept reading…

“Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.”

Ahhhhh man. Conviction. Ugh. Surely if Jake had gone to bed like that he must have been exhausted too. And playing the “I’m more tired than you” game never ends well, often leaving both of us resenting one another.

Honoring others above ourselves is not meant to be an easy thing. It goes against every bit of our nature. But when we do obey that command it is not necessarily about serving these people, but rather it is about SERVING THE LORD through our love towards others. It isn’t about Jake, it isn’t about Malachi, and it isn’t about Levi. It is about honoring God by serving others and fulfilling their needs…it’s not about doing these things with an expectation for return on the investment. It is about doing it with the heart and the mind of Christ, with zero expectations in return.

When we honor others, we are honoring God. My heart needs to reflect that motive instead of my selfish ones. 

And maybe, just maybe, I need to be plotting less about the pitcher of cold water.

And before you start sending Jake hate mail, know that he did get up with Malachi later that night for his 4am wake up which allowed me to get a straight 7 hour stretch of sleep. Amazing sleep.

And then there is the beauty in the challenge of the final part of that verse : “Be joyful in hope, patient in affliction, faithful in prayer.” All three of these things are challenging on their own. Throw all three in the same sentence separated by commas and boom. But I am claiming these words over our family tomorrow and will be striving to obey each command.

I pray that I can be joyful in hope as I wait anxiously in the pre-op room tomorrow. Malachi is very in tune with my emotions and I want him to feel joy from me instead of nerves.

I pray that I can be patient in affliction. The waiting game while your child is in surgery is incredibly miserable. This particular surgeon has wonderful nurses who oblige my request for frequent updates during the surgery. Part of me is sad that I know these surgeons and their staff so well, but anyway… while he is back in the operating room I sit close to a phone and wait for it to ring which it does 5-6 times during the procedure. Those hours of waiting drain my emotions. In fact, when I finish this entry the next thing on my to do list is to chop all my fingernails off so I can’t pick at them tomorrow during this time.

Faithful in prayer. God did not give us a spirit of fear. So when I am overcome by that fear the best route to clear it is prayer. But sometimes the devil gives me amnesia and I forget that fact. I allow myself to get overwhelmed by that fear instead of releasing my worry to God. Tomorrow I will be trying to be extra vigilant on focusing on faith over fear.

Please join us in prayer that tomorrow stays complication free and Malachi is able to have this procedure done laparoscopically (vs open incision). And pray that God overwhelms me with his presence and takes away that isolation I have been feeling lately.

Sincerely,

Leah