I don't know how long it has been since my last post, but today I knew I needed to let it out. I've been struggling a lot lately. Our family trip to Jamaica is coming up soon but what I pictured it to look like has quickly changed when our friends cancelled. We can still have fun as a family. We will make the best of it. But I keep thinking about how we have based the last year of medical decisions on this trip. We have pushed off surgery because we wanted this for all of us.
Jayen has been struggling lately; with seizures, behavior, school, and so much more. This weekend was the ultimate test of my patience. Matt is gone again for deer season and I have been left with everything. I drove to Lincoln and back three times, Ashland, Gretna and home. I begged my sister to watch the two little ones so I could be there for our eldest's basketball games. I thought I was giving attention to the littles when I was home and making them feel loved. Saturday night after my sister left, Jayen had a huge seizure that required emergency medicine. The seizure seemed to subside and Jayen eventually feel aleep in my arms. I've longed for one of those moments again as the kid is always on the go and seems to only ever want his dad. I held on to him for as long as I could.
On Sunday, my sister helped me out again but decided to bring them to the game in Elkhorn. It was so nice having a cheering section! I had volunteered to do the bookkeeping before I knew they were coming. I could see from my table that the kids were struggling directly across from me. I could see the frustration of my sister and our neighbors. Brilyn was antsy and showing off, but Jayen was uncomfortable and unable to control his body. These are often times of seizure breakthroughs. I tried watching the game, keeping track of all the stats while also keeping one eye on him. My mind was overwhelmed but I could see his body was too. When the game ended we gave D the chance to talk to his friends and enjoy his victory, but by the second Jayen was spiraling. He was using a fidget spinner to hit people and I was able to take it away which caused more anxiety and frustration with him. As I was talking with our neighbors, Jayen pulled a pocket knife out of his pocket and brought out the knife. He started coming towards me but stopped before the knife touched me. I could see the horror in everyone's eyes. I knew (I hoped) he would never do anything with it, but his emotions were not under control. After that, neither were mine.
I'm struggling today. I'm struggling with the decisions I will have to make today at his neurology appointment. Are they going to continue to push for surgery, especially now that we are this close to the deadline we gave them. After Jamaica we said we could consider it. I'm struggling with how to help my son, how to help our family and how to continue living like this.
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