Our week was wonderfully uneventful and I am so pleased to share that Malachi has not had any major night seizure episodes at all this week! The small/medium seizures are still happening but none of the massive ones. He is still staying up until around 3am but he has locked into a wake up time of 8:58 for the last four nights. It has been awhile since he locked into a wake up time like this, so I am really hoping this one sticks around for awhile. I can function relatively well on 6 hours of sleep and after the rough weeks we have been having it truly is a blessing.
The boys got much needed haircuts this week; here is a little before and after snapshot of Malachi.
In the photo above he is wearing one of his new church shirts. This week we had to go into a store to find new shoes for Levi and I noticed Malachi seething a bit with some jealousy. I could tell he didn’t like that we were getting something for Levi and not him so we headed to the big boy section to find him some new shirts for church. He was so excited this morning to get to wear one, and was very particular about it being the orange one. I love how opinionated he can be.
We went for another round of puppy training this week and brought out the chair for the dogs to start to become acclimated to. The goal is to be able to tie them to Malachi’s chair and have him “walk” them. She is also starting to work with them on the command “hold” so when Malachi is having a seizure they move their bodies against his to try to re-center him. When he seizes he pulls his head very far to the left and can get himself in dangerous positions. We are still on target to bring home one dog in three weeks and the second one the week after that. Jake says he is more excited than the kids, but it is safe to say we are all pretty hyped up about them joining our crew.
If you don’t know me personally, I am a pretty basic gal. I don’t have a lot of jewelry and accessories, hairstyles, or things of that nature. The same goes for my home decorating style- pretty plain Jane and basic. Although I was once a fan of knicknacks I find them now to be toddler temptations and dust collectors. I tend to go more for sentiment and spiritual reminders.
We moved into our new home in 2017 and I was at the tail end of a very high risk pregnancy. Levi came just 6 weeks later and off to Cincinnati we went and all of my boxes with home decor stayed sealed in the basement until recently. As I looked through the boxes of trinkets I just didn’t feel like any of them fit the new home quite right.
About two weeks ago I was staring at a small table in our living room and it just “needed” something. I visited my boxes in the basement and found two things worthy of coming out of storage and making a comeback into our lives. The first was a Willow Tree figurine I spotted when Malachi was small. It is a mother holding her son, and she was holding him the same way I held Malachi to get him to sleep when he was little. The figuring struck me enough that I decided to purchase it.
The second is a framed painting of Jesus done by an 8 year old art prodigy named Akiane Kramarik. She had vision of Jesus Christ and painted a portrait that is absolutely breathtaking. While I can’t say with confidence that is what Jesus looks like I love the photo (Google Akiane Prince of Peace to see it in all of it’s glory).
I snuck these two pieces up from the basement and positioned them on the table, and it was maybe 30 seconds before Levi had his hands on both. Raccoon fingers McGee doesn’t waste much time investigating new things, so we had to lay down some ground rules about not taking them off of the table. As most three year olds do, Levi has developed brief rounds of amnesia and forgets the rules often and we find Jesus in the playroom, the shower, and under the couch.
One day this week I noticed both pieces missing and sent him on a search to find them and put them back. Later that afternoon I was having a patience-testing moment with the boys and anger had welled up inside of me. I glanced over at the piercing eyes of Jesus in the painting and noticed that Levi had arranged them in a way that struck me.
It led me to a new “Confessions of a Special Needs Mom”:
I rely on distractions to keep me from focusing on the chaos.
It isn’t accidental, but rather it is a very intentional and calculated way to keep me from lingering on the hard parts of our world. And the truth is, this isn’t a new tactic for me. It is something I have spent most of my life doing to avoid some hard things life has tossed my way.
I can start a project as quickly as I can light a match, and I am not a quitter. I will see that project through no matter how many hours it takes and how much mental anguish it may cause. I am a professional distraction maker, if that’s a real thing.
Are any of you able to relate with this? The ability to mentally take yourself away from the drama, the pain, the reality. It is a tactic that gives me the false sense I am in control of something, even if it is simply control over my thoughts and fruitless endeavors.
I am about to do something I try to be very cautious in doing. I am about to take a verse out of context (go ahead and gasp here). But I believe that the word of God is living and active, and the Holy Spirit can take even words taken out of context to remind us of our weaknesses in Christ.
In the book of Haggai there is talk of rebuilding the temple. The people kept making excuses for not starting the project, but God spoke through the prophets and told them that the time had come to start. He was tired of their excuses and distractions.
Haggai 1:5-6&9b “Now this is what the Lord Almighty says: ‘Give careful thought to your ways. You have planted much, but harvested little. You eat, but never have enough. You drink, but never have your fill. You put on clothes, but are not warm. You earn wages, only to put them in a purse with holes in it…Why? Declares the Lord Almighty. Because of my house, which remains a ruin, while each of you is busy with your own house’.”
When I read this verse I can’t help but shamefully see myself in the words. Oh how many times I distract myself with planting but do not harvest- there are so many empty returns in my busyness. How many times I busy myself with things I deem as necessary (metaphorically eating and drinking) but they just don’t fill me. Just like the wages in the verse, there are rewards on my busyness but they flow through the holes in my bag leaving me back face to face with the original issues that spiraled me into distraction.
Sometimes I allow the distractions of my “own house” keep me from visiting the throne room of God. Sitting at the feet of Jesus is the only place we can go to truly be filled. But sitting and looking into the eyes of Christ is something I secondarily turn to after my busyness hasn’t sustained me. That is something I strongly desire to change in my spiritual walk.
As I stared at the mother figurine so aptly placed at the feet of Christ’s picture I got the Holy Spirit goosebumps. Sometimes resting at the feet of Christ and pouring out our hearts to Him is a true act of worship.
Leave it to raccoon fingers McGee and a bunch of knickknacks to remind me of my how desperately I need to REST in Christ. How I need to set aside my projects, my chores, and my distractions and find time to connect with my Father.
Join me this week in thanking God for Malachi’s seizure stability and for the rest He has given me the last few nights. He is such a good God. Please continue to pray for miracles for my boys, that God will heal them head to toe and use them to display His power.