Spring break for the win! Jake was able to spend all week with us and we had such a refreshing week filled with family time. Truthfully, having him home this week was such a gift from God as we have been dealing with some sleepless nights.
Malachi started a 14 day round of antibiotic to clear up the current lung bacteria that the cultures showed he was brewing. In addition to that we started his new antibiotic routine to prevent new infections from happening. Just one of these alone would have been tough on Malachi’s gut, but both at the same time has created a bit of…well…chaos.
His tummy churns all night long, waking him up from the discomfort and the seizures that it brings. He is on probiotics, but we really just have to wait this process out and hope that finishing one antibiotic will bring him some relief from the tummy issues.
While I want to be annoyed with these meds I can’t justify it as they are doing their job incredibly well. Malachi’s breathing has been dramatically better, with his oxygen saturations hanging around 96. The best word to describe his breathing is “comfortable” and already we are seeing an improvement in his quality of life. Aside from the increase in nighttime seizures that are likely due to tummy aches, we are seeing a decrease in his daytime seizures in both frequency and intensity.
We weren’t able to leave the house very much this week due to the chaos and the need for medical supplies so we spent time playing games and playing on the playground!
Levi is changing by the day. I could tell you story after story of the funny things he has been coming up with lately. His words and sentence structure have been growing a lot lately and watching his personality develop is such a treasure.
He has such a kind heart and goes out of his way to thank me for things often. This week out of the blue he said: ”Mom? Thanks for being my mom.” The more time I spend around him the more resolute I am to preserve his sensitive spirit and kind heart. I feel so strongly that God has some big things in store for him.
The photos from this collage were all taken the same week each year, starting the year he was born. Jake and I got a good laugh from his 3 year old photo (the green sleeves), forgetting how well his caloric needs were being met at the time haha.
Levi is now only taking tube feeds at nighttime and he eats table foods like a monster during the daytime. He has come such a long way.
Most days I rest in a state of denial, ignoring the challenges our situation can present. I know they are there but it is much easier to not think about them. I had some time this week to tackle the time sensitive items on my to-do list, many of which involve medical paperwork and medical phone calls.
When I am working on those things I have to face reality, so those tasks often take me to a dark place. Which is probably why I ignore them until I absolutely have to. I have to verbalize and write out diagnoses, needs, unmet milestones and each time I have to summarize my child using only negatives it feeds a bitter root that is buried inside. I understand why those hoops require the summary of the bad. Their tangible needs are a result of those differences, so proof is required. But summarizing my child using only the things they can’t do is just so unnatural.
This week another special needs mom shared this photo and it has imprinted itself on my brain.
If you aren’t familiar with the context, this photo is a representation of a story we read in Exodus 17.
Joshua did just as Moses told him, and fought against Amalek; and Moses, Aaron, and Hur went up to the top of the hill. So it came about, when Moses held his hand up, that Israel prevailed; but when he let his hand down, Amalek prevailed. And Moses’ hands were heavy. So they took a stone and put it under him, and he sat on it; and Aaron and Hur supported his hands, one on one side and one on the other. So his hands were steady until the sun set. And Joshua defeated Amalek and his people with the edge of the sword.
My initial thoughts with the story have always been focused on the friendship represented here, and what a beautiful example of what it means to bear another’s burdens. And I could write a thorough devotional on what that looks like in the Carroll journey.
This may be a topic for another day, as I share the loneliness the special needs road can bring. We have had so many teams of ”arm holders” cycle through our lives at different times. But inevitably the weight of our lives grows too heavy for others as well and we find ourselves alone in the mundane with shaky arms yet again.
But for some reason this week the longer I have stared at the photo the more questions I have.
Who was this display of God’s power for? Moses? His friends? The Israelite army below? Or was it meant to simply be a mutually beneficial moment for all?
Why did God call Moses to a task that he knew he couldn’t physically sustain? Why didn’t he require something easier of Moses?
So many faith questions have been brewing as I look at this photo and find comparisons with my everyday. Why has God called me to a life that is so physically and mentally exhausting? Every time I open my eyes I find myself facing a war that I am not qualified or equipped to fight. There are so many factors that are beyond my control with both of my children.
God didn’t call Moses to fight and he didn’t call him to step on the battlefield. God called Moses to be an instrument, a display of His mighty hand and His power. He called Moses to simply raise His hands in surrender to God and watch God fight the battle for Him.
Maybe I am not meant to ”fix” my children. Maybe I am just meant to be an window through which the world can see God’s control over their lives.
But even when we raise our hands and surrender the battle to the Lord our arms can grow weary. And I think that is something we don’t talk about enough in Christian circles. Almost as if we admit our weariness that somehow is perceived as lowering our measure of faith.
Why do we make it so hard to receive help and support? Egos can be a nasty thing. And I am speaking to myself here.
Let’s be honest- sometimes the callings on our lives bring about exhaustion and a stretching beyond our capabilities. I can just imagine the emotions of Moses in that moment, lowering his hands out of exhaustion and watching in desperation as his army fell in battle. The pressure that came with that calling was immense. But again, God called for arms held up in surrender- trusting that God would provide the victory.
As a special needs mom there are so many battles that I can’t fight. I can’t battle seizures. I can’t battle complex airways. I can’t battle cerebral palsy. I often keep my hands busy, trying unsuccessfully to create my own victories. Can any of you relate with this?
But this week I am reminded that God already knows the moment our arms will begin to shake. He already knows that we can’t do these tasks apart from Him. So instead of focusing on the negatives of the situation we have to choose to believe that this moment is a faith growing moment for someone.
Sometimes our glowing inadequacies and God’s work through them are meant to encourage our faith and something they are meant to encourage the faith of those looking in. Sometimes our weak moments are opportunities for others to come alongside of us and get a different perspective.
So if you are like me and you find your arms shaking under the calling God has placed on you, be encouraged that it is in your weakness that God is teaching and refining both you and others. So as uncomfortable as you may be, trust that God is still working through you.
I am very tired today. I am not even sure that all those thoughts made any sense, but I am going to trust that the Holy Spirit can connect the dot with that jumbled devotional and make it something meaningful to your heart.