The theme of the week has unfortunately been seizures. Our sweet Malachi is having a very hard time right now and is having between 8-14 seizures a day. Most of the larger ones are at night and at this point they still seem to be gut related (due to increased secretions/swallowing because of incoming teeth). The nighttime ones have been scaring him so they end with him crying very loudly and it is in turn waking up Levi, who immediately starts crying because brother is upset. This cycle continues all throughout the night and frankly we are exhausted and my spirits have been down.
Malachi has intractable epilepsy (seizures that can’t fully be controlled) and Lennox Gastaut syndrome which means he will continue to develop different seizure types as he grows. Right now he has four different seizures types, all coming from different damaged areas in his brain. Seizures are a symptom of brain damage, and with no was to “fix” his brain they are going to continue to be a large part of Malachi’s life.
There is constantly the lingering worry that something large is causing the seizures, like a shunt malfunction. But in order to get that checked he would need to have a CT scan at the hospital so I want to be certain that the trip would be necessary as it would expose Malachi to a pretty COVID covered place. Pain relievers seem to be making a slight difference which makes me feel like shunt issues are not the culprit.
With Malachi sleeping just 2-4 hours each night, most of our daytime hours are spent in a daze. Thankfully Jake came home on Tuesday evening and was able to help take some night shifts this weekend. I am not going to lie- I have spent most nights this week in tears calling out to God.
Even Levi has been praying for Malachi, as you can see in this sweet video:
Alright, now time to focus on the positives…
Our playground project is coming along well! I think the plan is to actually construct the playset this week and both boys are still giddy with the anticipation.
Speaking of overwhelming joy, here is a video of Levi opening some jeans that his grandma sent him. He has an obsession with blue jeans right now and equates them with getting to leave the house. We only had two pairs of jeans and if they were in the hamper he would meltdown. Grandma came to the rescue and sent a few more pairs.
Malachi has been exhausted but still silly and giggly. We have been playing a few round of baseball with the boys each night before Jake goes to bed.
I have caught little Levi doing Bible studies this week like his mommy and daddy. He pretends to underline and hearing him pretend to read the Bible (even when it is upside down) is so sweet to me. My thoughts keep wandering to his future and what God might have in store for him as he grows into a young man.
I had several comments on last week’s blog about wanting a copy of the small group/family devotional our church recently created. We have found a way to mail them, and I have also created a PDF version if you or your church would like to print your own. It is not the most faith shaking, earth shattering devotional you will ever read but it is a GREAT resource for people who may feel intimidated to start those types of conversations in their homes and social circles. Email me at email@example.com if you would like one. They are completely free! And if you commented last week and didn’t get my reply send me an email.
As I mentioned before, this has been an emotional week for me. The only way to stop Malachi’s seizures is to help get a burp out of him. It is a very physically taxing process that only gets more difficult the more he grows. When his body is in a seizure he engages every muscle and he becomes insanely strong. If I am holding him during one, my muscles shake with the pressure of keeping him upright and safe. I wake up sore every morning from simply taking care of my child. And that makes me so sad.
But aside from all of that there is a little boy who is scared of his own body. Helping Malachi navigate some of the hard things in his life can be so challenging, as I have to often fake my own fear to calm his. Seeing the fear in his eyes is so very hard. Even he has been dreading the nighttime this week.
I have been explaining to God that I feel so unqualified for this journey. Unqualified in so many ways.
But then He gently reminds me that He looks for the unqualified. Being qualified for something brings pride, arrogance, and self-reliance. Being unqualified brings a sense of humility that keeps me connected to the Vine.
John 15:5-8 “I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing. If you do not remain in me, you are like a branch that is thrown away and withers; such branches are picked up, thrown into the fire and burned. If you remain in me and my words remain in you, ask whatever you wish, and it will be done for you. This is to my Father’s glory, that you bear much fruit, showing yourselves to be my disciples.
But in addition to feeling unqualified, I have been so unhappy. At the risk of sounding selfish, there hasn’t been much in the week that has made me smile. Gosh, reading that sentence makes me feel guilty for even typing it. But transparency with you all is so important to me.
But even in the unhappiness I have been experiencing I have remembered a truth:
Life isn’t full of just happy moments, and it is in some of the more miserable ones that we have the opportunity to truly please the Lord with our heart and our actions.
I don’t know if you are in a dry season like me right now, having to search hard for things to smile about. But if so, let’s try to refocus our thoughts towards things that bring us closer to the Lord. Open your Bible, turn up that praise music in the car, speak aloud to him. Don’t let your unhappiness lead you away from the source of all joy.
I am going to be tackling the book of Daniel in my quiet time over the next two weeks if anyone wants to join me. There are 12 chapters total, so I plan to read one a night for the next two weeks. He is such a good example of remaining unstained by the world, and right now I need those reminders!
5 thoughts on “Do What Makes You Holy”
I will be praying Malachi’s seizures stop. Praying for you as you open up Daniel and get started. Thank you for always sharing your heart.
Praying for Malachi’s seizures and more reasons to help his Mama & Malachi to smile. Love and prayers for you all🙏🙏❤️❤️ Sharon
Girl, I know you have mentioned you use medical cannabis/CBD with Malachi. I would suggest that you start trying different formulations and increasing his dosage. Remember, unlike with pharmaceuticals, NO ONE has ever OD’d from cannabis. As a bonus side effect, it may even help to dry up some of his secretions.
Look to the leaf!
Prayers that the seizures calm down so you can get some rest! Being so very tired can take your mood down. I think it sounds like you need a ‘date’ night or even a couple hours for a little break. Maybe one or more of your trusted inner circle could watch the boys so the two of you can go for a drive and maybe get something to eat even if it means eating in the car for safety. It might refresh you a bit and perk you up! Sometimes being away from the situation can give a person new insight, energy and refresh you. I realize this sounds easier than it actually is but maybe it could be worked out somehow. Anyhow big hugs and lots of prayers and I hope this week has been better! Linda
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