This week we tackled some much needed appointments for both boys so we will start with some quick health updates.
Malachi went back to the neurologist this week and we have a plan in motion for weaning off of one seizure med while simultaneously increasing another. This is great news, but also a very sensitive transition. Changing seizure meds and changing doses can lead to breakthrough seizures, and while we don’t have ”seizure control” per say right now we don’t want to make things worse. I started decreasing the med we hope to eliminate and it has led to an increase in seizures. I will give it another day or two but if he doesn’t level out it is safe to assume we were too aggressive with the wean and we will have to back up and try again.
Our nighttimes have been pretty rough for several months now with Malachi staying up until 3am most nights. His brain is just struggling so much to level out.
Malachi did have to have some blood drawn to check his liver enzyme levels and I am happy to share that those levels looked great! He usually handled blood draws like a champ but really struggled with this one leading to lots of tears. Levi had a hard time seeing Malachi so sad and watching him trying to comfort him was so heartwarming.
Both boys went to see the gastroenterologist (we shorten this to GI doc) this week. This was the first time we have seen him since Malachi’s inpatient stay so we had a lot of catching up to do. Malachi lost a significant amount of weight due to his surgery and contracting covid and the scale shows that he is 34 pounds. According to the charts he is nowhere near where an 8 year old boy should be but that doesn’t surprise us a bit.
Levi has officially passed Malachi’s height and weight and is in the 75th percentile for his BMI. He is actually doing so well that the doctor has us cutting his daytime feeding pump sessions down by two. This is a pretty big deal! He is still fed continuously at night but even that is proving to be a challenge this week as he has started sleep walking a bit. He is in a bed with very high sides to keep him from rolling out and dislodging his tummy tube but the last few nights he has been standing up in the middle of the night and teetering near the side of the bed. I sleep lightly with the boys and have been able to get to him each time before something bad happens but it still isn’t an ideal new habit with a g-tube.
Speaking of tummy tubes accidents, here is a sweet picture of Levi before church this morning. Five minutes after we dropped him off at children’s church the teacher brought him to us in the service- his tummy tube extension had popped open and somehow was unclamped. Milk had poured out of his belly and all over his khaki shorts, so he ended up with the ”car shorts”- that one pair I keep in the back for emergencies. At least I got a cute photo before the chaos hit!
We wrapped up our soccer season this week and we pause all sports for a few months to regroup as a family. After the new year God has led me to start a children’s soccer ministry in our community, teaching both the sport and lessons about God each practice and game. Jake will be coaching the high school boys team during this time and we will also be running our adult indoor soccer league at the church so I recognize life is going to get wild, but when God calls me to do something I walk in faith knowing He will provide the energy and ability to see it through.
On Thursday and Friday Malachi spent a few hours at school at his request. Levi and I went into town and ran errands while we waited to pick him up and I tried to catch up on all the things that are exceptionally hard to do with a wheelchair and another toddler in tow.
Simply getting Levi out of the car and carrying him into a store was such a unique experience. I just felt so…normal. As we wheeled down the aisle with Levi in the cart I had people make eye contact with me and stop to interact with Levi. They complimented his hair, asked him his age, and smiled with their face and their eyes. I know that sounds like an odd thing to mention but special needs moms rarely get eye contact from strangers. We get awkward shuffles out of the way and we get lots of well meaning comments (“Wow you have your hands full!” or ”God gives special children to special people.” etc)
The anonymity I felt this week as just a typical mom was really refreshing- but then when I realized it was refreshing I felt a pang of guilt as if I were cheating on my special needs momma self. I love my unique motherhood journey and I have accepted the role that God has placed me in, but the social encounters this week really made me think.
I have been thinking specifically about relationships and how isolating our world can get. We have a wonderful community support system but sometimes it feels like we have worn out our welcome and we tend to see friends slowly start to drift away. Friendship with our family is a lot of work and we tend to ”bleed” onto those around us without intentionally doing so. I know this potential for friendship destruction exists so I catch myself trying to bubble wrap my friendships and not let always see the hard parts of our lives. I shield them away for fear of losing another friend, but in turn that leads to a superficial friendship that doesn’t last.
The psychology of rejection is something that has a grip on me. I don’t know if any of you share that same struggle. Each time I think I have overcome I am reminded by a circumstance or a memory that I have not fully healed from the many moments of rejection in my past from people I loved.
But I am coming to terms with the idea that God never intended us to blend in. And He provides a continual reminder in His word that our reliance should be placed on Him instead of others.
I can apply this thought to my family specifically, as God has clearly written us a novel that I have never seen in a bookstore.
But I can also apply this thought to the way we are called to live our life. When we strive to fit the mold of the world we will never be fulfilled. I think about those encounters with strangers in the store this week and how yes, it was refreshing but in the end still so unfulfilling. The devil used that temporary high in my heart to plant potential seeds of bitterness.
Matthew 7:13-14 ”Enter through the narrow gate; for the gate is wide and the way is broad that leads to destruction, and there are many who enter through it. For the gate is narrow and the way is constricted that leads to life, and there are few who find it.”
As a child of God I have chosen to walk the narrow road. It seems to foolish to now that I acknowledge that to complain about how narrow and sometimes isolating that road can be. As I reflect back on relationships that have dissolved I can’t ignore how toxic many of those friendships were in my walk with the Lord. Sometimes we foolishly mourn over branches that God has clearly pruned from our life to allow healthier fruit to grow.
Instead of looking for eye contact from strangers for encouragement on the road I need to make eye contact with God- because in the end that relationship will never dissolve. God welcomes my mess as He recognizes that He is the one who entrusted me with it.
I feel like I am off my blogging game today. We had record breaking numbers at our home Bible study last night with over 50 people! Praise the Lord!!! My brain didn’t have much energy left for blogging on my normal Sunday night routine. I will just have to trust God that He will speak to you through something that was said!
And please pray over our parenting journey as it continually evolves. As Levi is getting older we are discovering new challenges with parenting Malachi. These challenges are bringing new grief to all of our hearts as we navigate brother jealousy.
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We don’t get to visit anymore, but you and the kiddos are always in my prayers. Our times together are some of my fondest memories. I am thankful that you have chosen to continue your blog as that is how I keep up with you all. The boys have grown more than I can imagine. Know that you and the family are a true gift.
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