Sometimes I struggle coming up with a first sentence in my entries. The first sentence always seems to set the tone for the rest of the blog entry and this week I find myself wavering between lots of emotions. I don’t know how to start an entry and convey that we aren’t doing good, we aren’t doing bad, we are simply surviving in just one sentence.
The truth is that life has been incredibly hard lately. Yes, we are through Covid but we are still so far off track from all of the drama prior to that round of sickness. We are so thankful to be done with sickness and emergencies, but I still long for a baseline so I can get my bearings again.
Malachi’s seizures continue to be a daily battle. They are lasting for several minutes and he is having at least 6-8 a day. Most nights this week he slept just 3 hours and his body and mind are tired. We met with his epileptologist this week and I had to fight back tears, asking him to please please please help us find some relief for his body and brain. We had found such a great combination of seizure control meds prior to his liver failure. Being back at step 1 for control is so discouraging.
We have started a new regiment as we struggle to get some of his old meds back on board. Right now Malachi is on 4 different seizure medications twice a day. The medications cause his personality to disappear a bit and he is lethargic and sleepy. When he does fall asleep during the day he wakes up with massive seizures and vomiting.
We are just in a very hard season of life right now and I find myself feeling very ill equipped. Watching suffering never gets easy.
Malachi’s bloodwork shows that his liver enzymes are in a safe place and we are grateful for that! We have started a wean to get rid of one of his liver medications and we are hoping that helps clear up the intestinal issues he has been dealing with since his surgery in July.
Even through his exhaustion and mental fogginess Malachi continues to give 100% at horse therapy. Seeing that big smile was the highlight of my week.
Both boys absolutely love animals. A friend of ours owns a farm down the road and invited us over to play with their puppies before they go to their new owners, so of course we accepted and I took the boys over for some puppy cuddles.
We also got to feed the chickens and check for eggs. I don’t have many photos of Malachi as he is getting bigger and requiring both of my hands to support him and keep him safe.
Levi has been a mix of sweet and sour this week. I am told that comes with this age, but that doesn’t really make me feel any better about it haha.
There are times when he is kind and so sweet. We have been spending time talking about manners and kind words and hearing him use words like ”thoughtful” and ”rude” makes me smile.
And then there are the difficult times. The temper tantrums that are just now starting to frequent our home. The bad decisions and the consequences that follow. Parenting well and discipline requires a consistency that I am not always to provide when my arms are filled with a seizing Malachi.
He has been asking every night to play a game and loves to sit around the kitchen table as a family. He is so inclusive of Malachi, even asking for us to order Malachi his own mac and cheese at a restaurant today.
“One who dwells in the shelter of the Most High will lodge in the shadow of the Almighty. I will say to the Lord, ’My refuge and my fortress, my God in whom I trust!’ For it is He who rescues you from the net of the trapper and from the deadly plague. He will cover you with His pinons, and under His wings you may take refuge; His faithfulness is a shield and wall. You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness, or of the destruction that devastates at noon. A thousand may fall at your side and ten thousand at your right hand, but it shall not approach you. You will only look on with your eyes and see the retaliation against the wicked. For you have made the Lord, my refuge, the Most High, your dwelling place. No evil will happen to you, nor will any plague come near your tent. For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.”
I bolded several thoughts that the Spirit pressed on my heart as I read this scripture and I would like to share those with you.
“Dwells”. This word is one that has been placed on my heart so many times this week. How often do we play the back-and-forth game with God, leaning in when times are hard by leaning away when we feel like we have everything under control. There is a difference between speaking to God and dwelling with God. Dwelling is a long term rest in His presence. It isn’t a quick refill and then head back out. It is taking time to lean in close and rest in His embrace.
“Rescues you from the net of the trapper and from the deadly plague.” Y’all, this one hit me hard. Sometimes we find ourselves in the net of the trapper and sometimes we get the deadly plagues. We are not exempt from attacks from the devil. You WILL end up in his net. We have to stop being surprised when the trials in life come- learn to expect them and spend the easier days building up your faith for the hard stuff of life.
This week we were talking about our puppies upcoming surgery to be neutered. Levi listened intently as Jake and I talked to one another and then he chimed in with ”The puppies have to do hard things?” This is a phrase we use often in our home, particularly around medical procedures and uncomfortable things. I am constantly repeating a motto of sorts ”sometimes in life we have to do hard things. And you CAN DO hard things.” No one is exempt from the hard things of life. Sometimes we need to be rescued, and what a faith building moment those rescues can be!
”Under His wings you may take refuge.” Sometimes I get so focused on God swooping down to rescue me like we just talked about that I forget that the responsibility to nestle under the wings of God also lies on our shoulders. God won’t hold you prisoner under His wings, it has to be our choice to remain there and to take refuge. Choosing refuge is a decision, not a mandate from God. He offers those spots under His wings to give us moments of peace and protected respite.
“You will not be afraid of the terror by night, or the arrow that flies by day; of the plague that stalks in darkness” When I read this verse it knocked the wind out of me. This is the struggle I have been in this week. My mind and heart have been at war each evening as I lay my head on the pillow, spinning as I process Malachi’s future. It terrifies me to think about losing him. I have found myself praying heavily over his death this week, whenever that time may come, that God protects Malachi from suffering. The thought of the future has been keeping my mind up at night, leaving me weakened for the arrows that fly by day. The constant arrows…the seizures, the medical mishaps, the “hard” stuff of our lives. This verse says that we will not be afraid of these things if we have made the Lord our dwelling place. When these thoughts at night overtake me and stalk my brain it means that I am not dwelling with the Lord. I have strayed and I need to find my way back under His wing.
“For He will give His angels orders concerning you, to protect you in all your ways. On their hands they will lift you up, so that you do not strike your foot against a stone.” This verse is such a beautiful verse. The mental image it creates for me is so special, especially considering Malachi is unable to walk. I have this scripture in each of the boy’s bedrooms as a reminder to pray it over them. Knowing that there is a host of angels surrounding us and waiting for those moments when we trip so they can catch us is so special.
I can feel in my heart and soul that I have stepped a bit too far away from the protection of God. I have moments of dwelling, but they have been fleeting and just enough to refill that cup just slightly. This week I will be working to settle in under those wings again and thank Him for His faithfulness in our lives.
Malachi is ready for bed and that is a cue I would hate to ignore! We both need some rest. But I am so thankful for the many ways you lift our family up in prayer.