Jake and I have been making a concerted effort to make July a month focused on family time together and we have all been thoroughly enjoying it. We have been staying home most days, finding things around the house to keep us busy and focused on family.

We aren’t big holiday people so we typically don’t do anything special for the 4th of July. But this year Levi asked if we could do fireworks so we picked up a few sparklers and squirt guns to make it a fun evening. Side note: we used a carrot method I saw online to extend the sparkler a little further from the boys hands and it worked marvelously.

We are a pretty competitive family so we have been spending the evenings playing games together, one of Malachi’s particular favorite things to do. We opened up some beyblades he picked out when we were in Orlando and he loved the sounds they made as they hit each other.

It is getting harder and harder to find age appropriate toys that Malachi can enjoy, so we are always pumped to find something “big boy” that we can help him do.

We have also been spending a lot of time on the playground and in the pool.

The last two weeks have been complicated ones medically. Malachi’s seizures have been uncontrolled and overtaking his little body at night. He desires to sleep but every time he drifts off his brain and body jerk him awake just a few minutes later, having dozens and dozens of seizures each night. These seizure cycles keep him awake until the sun rises. Watching the suffering of epilepsy has always been one of the hardest parts of our daily life as it hits this vein of helplessness in me as a mother.

My initial thought is always that we may be dealing with a shunt malfunction, so once we eliminated that being the issue we start the flowchart of other potential causes. Unfortunately there isn’t always a specific cause we can point to so we just have to operate as this possibly being his new normal and make a treatment plan.

This week his neurologist started an aggressive medication increase with one of his three seizure medications, doubling the dose. Anytime we make drastic changes it takes Malachi some time to adjust to the new dosage and we monitor him during this time for new side effects or quality of life struggles. Sometimes we can medicate too much to where he can’t express himself or stops having opinions. Finding that delicate balance of medical treatment while preserving quality of life is so important to us.

The lack of sleep that these few weeks have provided mixed with the emotions of dealing with epilepsy have left me a little…frantic. I am not sure that is the right word but we will stick with it. When things go beyond my control I fight so hard to get control of something else in my life, grasping at anything else within reach. It may be a project I take on, a battle I decide to fight with Jake, or even micromanaging another aspect of parenting. It is never a good substitute for what my heart is searching for.

It also leads me to a dark place as a parent thinking about the future. I am able to suppress and fight reality checks when things are going smoothly. But when we get stuck in these loops of uncertainty and the reality is staying in front of my eyes each hour I get so easily discouraged.

It is a highs and lows situation, and the more I processed my emotions this week the more I kept thinking about the Israelites and their 40 years in the desert. Growing up we read about the Israelites “wandering in the wilderness” and that word has hit home with week for the struggle I have been having. I feel like I am wandering, not really sure of the future I am wandering towards, or even if I am going in the right direction.

Through his 40 years of wandering Moses went through such amazing, intimate faith building moments with the Lord. He watched God provide, he watched God part seas, and he watched God produce unfathomable miracles. But he also went through days of simply journeying. Days of putting one foot in front of the other on a journey you can’t control. He went through days of weariness and fatigue, days of frustrations with others, and days of desiring an easier journey.

I want another miracle in our desert. Because those miracle moments remind me that God is still working. But is that truly faith? To require a miracle to feel affirmed in my relationship with Him?

Faith grows quickly through miracles, but it also grows such deep roots through desert wanderings. When we crave the miracles moments, cheapening the simple God moments in our everyday, we make our faith more about us and less about God.

As I leaned into my weariness this week I found myself praying fervently over Malachi’s suffering, and specifically over Malachi’s death. This sounds so incredibly morbid, but even when he was a baby I have pleaded to God over Malachi’s passing, specifically that God would spare him from great suffering when He calls him home.

As I cried out to God He began to reword and refocus my prayer in a powerful yet simple way and placed a phrase on my heart, repeating it three times very clearly. The two words were “overwhelming grace”.

I continued to pray those two words over Malachi’s life and for our years in the wilderness, that we would continually be overwhelmed by the grace of God in our lives and in our journey. And God has been filling my heart all week with beautiful reminders of His grace thus far. God’s overwhelming grace is the faith fuel I needed this week. A reminder that His grace is sufficient (2 Corinthians 12:9).

2 Thessalonians 2:16-17 “Now may our Lord Jesus Christ Himself and God our Father, who has loved us and given us eternal comfort and good hope by grace, comfort and strengthen your hearts in every good work and word.”

I really want to write more but Malachi is in a seizure cycle and I need to focus on him right now. Thank you for checking in on our family and for reading my heart’s thoughts, as disjointed as they may be. And please continue to pray over Levi’s surgery in 3 weeks, that we make wise choices for him and have the clarity of mind to advocate when needed.

And please continue to pray for seizure relief for our Malachi.

Much love,

Leah