Stinky Pits

Do you ever find yourself in a situation and you have to sit back and think “Wait, why am I doing this again?”

I have those moments often, and this week’s moment came when I found myself loading up the boys and heading three hours away for a regional tournament soccer game with our girls team. Malachi had a tummy ache on the way there, which meant lots of pulling off the highway at shady gas stations and trying to burp him. We made it there just in time for kickoff, and by that time I was a stressed mess trying to make sure the needs of my kids were met while attending to coaching the game.

I failed miserably at both jobs, and an hour and a half later I was loading the boys back into the car to make the three hour ride home. The boys were tired of being in the car, and they were both wired by the time we made it home at midnight. As I sat awake with Levi at 3am, I mentally started asking myself the question of “Why are we doing this? Why are we continuing to coach soccer when it requires so much of a sacrifice?”

The next day I was a walking zombie, but that evening we were hosting an FCA Fields of Faith event at our church for the teens in our county. We asked my mom to come to the house and watch the kids for a bit so we could both go and focus on the event. We were so pleasantly surprised when we saw so many of our soccer girls walk through the doors, many of which do not know the Lord.

I don’t ever want this blog to be used as a breach of privacy for people in our circles, so I will summarize with saying that it was a wonderful evening with lots of people growing closer to the Lord, including some of our soccer girls.

God has been reminding me that Jake and I have been called to be seed planters. Sometimes you have to step into the world to find unique places to plant and water seeds for Christ, and for us that is the soccer field. Some years we don’t see the seeds grow, and watching the thorns choke them out can be so discouraging. But then there are years like this one where we see God moving in a group of teens and know that He is hard at work!

On a totally unrelated note, Jake and I do Christmas a bit different for our family and follow “one thing you want, one thing you need, one thing you wear, and one thing you read”. We try to be very thoughtful about the gifts we choose, and this year I have had my eye on a touch activated dinosaur for Malachi’s “want” gift. They are ginormous and will sit within reach right next to Malachi when he is in his adaptive seating. The toy was discontinued in 2009, but I was able to track down a reasonably priced one in Knoxville. We made a quick pit stop on the way to the soccer game and snagged this beauty.

Shhh, don’t mention it to Malachi! He knows we picked up a Christmas gift for him, and the suspense has been making him smile all week. For now the dino is tucked safely in the basement!

The boys are continuing to improve at horse therapy- Levi is enjoying it finally and not bursting into tears when we enter the barn.

As you know, Malachi’s brain damage is extensive and one diagnosis that can go hand in hand with it is precocious (early) puberty. Last week I caught a whiff of body odor and realized that Malachi has one stinky pit. Oddly enough, it is just the one but oh goodness it will knock you down. We have been trying to find a good solution but after showers and scrubbing the smell still holds strong. We picked up some natural deodorant for him and it seems to be working, however Levi has been fascinated watching this whole process unfold. So fascinated, in fact, that he found daddy’s Old Spice and proceeded to cover Malachi’s hands, arms, and cheeks with it. So helpful, right!

I have been having a hard time accepting the BO on my 7 year old son. It seems like such a weird thing to be sad over, but it has spiraled my thoughts toward the realization that, precocious puberty aside, Malachi is growing up. And while my love and acceptance for him will never change, I fear that societies tolerance will change for him when he is no longer a “cute little boy in a wheelchair”. I hope and pray that my fears are irrational and unfounded.

Levi loves Malachi so much, and has been making sure to include him in all of his antics and pretend play. I found Malachi all propped up with an old iphone earlier this week and seeing his inclusive heart for his brother makes me happy. Malachi, on the other hand, didn’t quite know what to think.

On Thursday Jake and I had some friends reach out and graciously offer to babysit the kids so we could go out. For my birthday in March I was gifted a Cheesecake Factory gift card, and covid hit shortly after. It seemed like a perfect night to cash it in and enjoy some time alone. Jake and I spent the evening talking about life, and the many surprises it has yielded.

With Levi’s birthday coming up in three weeks my mind has started to drift towards those early days with him, and the surprise mountain we faced. Sometimes simply verbalizing the struggles can be therapeutic, and this was no exception!

There are certain times each year that trigger bad memories for me, and this particular week each year is always a rough one.

This was the week in 2013 that I was holding Malachi and felt an unnatural jerk from his little 9 month old body. We had been home from the NICU for 5 months and we fully believed that God would completely heal him from his issues surrounding his prematurity.

I will never forget the deep feeling in my gut as the motion of his body felt so rhythmic. I loaded him up and took him to the children’s hospital where they confirmed he was having a rare seizure type called Infantile Spasms- this seizure type has a 75% rate for severe mental retardation. These seizures continue to damage the brain until they are under control and in order to do that we had to start him on an intense steroid, shooting it into his little body twice a day for several months.

We eventually got his seizures under control, but through the course of that leg of our journey our hopes for a normal life for Malachi were dashed a bit. We still believed God could heal him, just we started to understand that His timeline didn’t seem to be matching up with ours.

Fast forward to the next year and Malachi went in for a surgery to correct three minor issues. But while they were in his abdomen they found a very serious intestinal loop that required major surgery. After surgery we were sent to the ICU for a bit, and those memories never leave.

As luck would have it, this was the same week for another abdominal surgery for Malachi in 2018. I am really hoping that eventually we can have the “good” years overpower the “bad” ones for this particular week!

Sometimes I sincerely wish I had a poor memory. I wish I could forget the details, the dates, the facial expressions, the shoe colors of doctors when they delivered bad news. But my mind steel traps them in. I saw a photo of a child in the hospital this week with a particular tape on her IV, and I could immediately smell the tape scent in my mind. I know that sounds crazy, but the details plague me!

I am starting a new study with my youth group this week called “Fake or Follower”, and one of the key concepts is the cost of following Christ. This week I have been reflecting back on different parts of my life, trying to find the ways in which following Christ has “cost” me something.

And during this reflection process God has shown me that the biggest losses for me have been friendships/relationships. I can count time and time again when I followed a direction God has called me to, and as a result friends have been so frustrated or offended that they have chosen to cut ties with me. Some have done so in subtle, gradual ways while others have done so with a barrage of unkind words.

I have mourned so much over those lost friendships, but looking back I would not change the decision I made to pursue the path God called me to. My God is not a God of regrets, especially when it comes to obedience. But I have to be completely honest…each of those lost friendships have hurt me deeply.

The cost of following Christ instead of the world can be painful.

But God has been reaffirming in me that you can’t let the fear of man’s reaction keep you from pursuing the path God is calling you to.

Galatians tells us:

Am I now trying to win the approval of human beings, or of God? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.

This week I have let the creaks of loneliness enter my bones. But God has been reminding me that there is a season for everything, and I have to look for contentment in each season.

Please continue to pray a hedge of covid protection around our family. We seem to be narrowly escaping people that find out they are positive, and I am confident that is the Lord’s doing! May he continue to protect my sweet boys and keep this final week in October a healthy and surgery free one!

Much love,

Leah

5 thoughts on “Stinky Pits

  1. That church meeting showed people without masks. Actually, I could not see even one mask, though perhaps some folks did care about others and thus wore a mask. I am very glad you did not drag your kids to this event, but I am concerned that you are relying on God to protect you. As this post details, God has not done anything to improve Malachi’s condition despite your faith convincing you that all would be well. I admire you so much, and I do not want to upset you. However, look at the statistics showing many instances of Covid bursts following church gatherings. Please be safe.

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    • Hello Suzanne, I appreciate your concern for my family and my children. Jake and I typically alternate who attends church functions and keep the boys at home. We wear masks and stay 6 feet away from people, so I am confident that we are doing our best to protect our family while still fulfilling the calling God has on our lives. The people in this community understand our situation and keep their distance. In our area, covid has not been spreading as it has in other parts of the country. Should it start to boom we will react accordingly.

      But beyond that, I would love to address the comment about Malachi’s healing. My Faith never convinced me that all would be well with Malachi- my Faith rests in believing that God CAN make him well. But even if he doesn’t (which seems to be our reality right now), we still trust that God is working through his story. Our hope is that when we are vulnerable and transparent with our life that it will help people understand that Faith in God is so much more than answered prayers. It is about trusting that God can use what the world sees as “broken” to teach us so many lessons.

      I would be more than happy to clarify or talk about any questions you might have, and I am thankful you gave me an opportunity to explain a bit more. I am not confident that my response will make you feel any better about the state of our nation right now in light of covid, but be assured that we believe that God will protect our family, and no parenting error on our part will take Malachi heavenward before God is ready for him. Without my Faith I would be a basket case!

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      • We don’t know God’s reasons for what He allows and who may be touched by it. It’s not always about us, sometimes we are simply part or God’s plan for someone else. I know that you know that Leah, it is just hard for others to understand who don’t walk the walk you walk! Thank you for being so transparent and vulnerable, God knew all of this was going to happen, He knew each of you before you, your husband, Malachi, or Levi were ever formed in your mother’s womb. May the Lord continue to bless your family, put a hedge of protection around all of you, always.

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  2. We don’t know God’s reasons for what He allows and who may be touched by it. It’s not always about us, sometimes we are simply part of God’s plan for someone else. I know that you know that Leah, it is just hard for others to understand who don’t walk the walk you walk! Thank you for being so transparent and vulnerable, God knew all of this was going to happen, He knew each of you before you, your husband, Malachi, or Levi were ever formed in your mother’s womb. May the Lord continue to bless your family, put a hedge of protection around all of you, always.

    Like

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