It has been a long while since I have posted. Christmas has passed, John John had his next mri, we have ripped our hair out, and been up and down at alternating moments. Oh, where to start? Let me start before Christmas.
We had carbon monoxide in our house right before Christmas. (we didn’t know it was in the house) We all experienced different issues. John began to have severe headaches, vomiting, nausea, and quit eating very much. Steve and I felt dizzy and tired. We were lucky we didn’t die because of the problem.
So, the focus is always John…what is he experiencing that would be red flags on the brain tumor list. We had three solid checks. Nausea, vomiting, and headache. Classic brain tumor symptoms. We simply were beside ourselves. Steve praying and rebuking it. Me taking stock trying to decide when the right time to call the dr. was. Always the doubter in the “miracles” that God is going to bestow on us. I say this not in mockery, but in reality. we have a child who had stage 3 brain cancer, it has since spread to stage 4. Next comes all the complications from stage 4 and what inevitably comes after.
We knew the mri was coming. We waited it out through Christmas, determined to get another Christmas under our belt before any potential bad news. We worried constantly about the nausea, the weight loss, the vomiting….not knowing what was causing it. Steve brushed it off most of the times. We had a few “come to Jesus” meetings over the course of the Christmas break about what could be happening. I let him know where I was, he let me know where he was. It was very scary. We all were hanging on and waiting for the dreaded mri.
I squirreled myself away in my office for weeks with the kids. We watched movies, read books, played games, and just hung out. Steve went to every church he could. I quit going to church. I couldn’t handle the questions, the repetitive story of our reality when I was so worried, the answers of, were praying for you. Normally this is a welcomed response. But, I wrestled with God. In every way a person could. to my tired mind and heart, prayer is always happening…I am always talking to God, but I don’t know to what end lately. I have fasted, I have prayed, I have pleaded, I have begged, I have strayed….all with the same results. It has split my soul, so to speak. I am fractured and my identity blurred.
I don’t know any longer what I am to hope for. Life or death? I don’t even know which is greater. Earlier this month I saw my son dying…with all the red flag symptoms of brain cancer….I resigned myself to his dying….is that so wrong? I certainly couldn’t share it with anyone. I’m afraid of judgement. Would it be so bad for my son to forbear pain and suffering to die quickly? Simply to be put into the arms of God? Or should I wish more time for myself to grow him up in this god forsaken world. Only to worry if he is going to make the right choices and end up with a long life in the arms of God…..
I know my thought pattern is fractured. I am well aware of that. I haven’t blogged in so long because I am struggling with many of my views.
so, anyway…the MRI…it was horrible. we had a nurse that couldn’t land an iv into a 5 mile wide pond. After the second stick, John’s frontal lobe brain damage kicked in and he lost control and couldn’t regain it. The nurses wouldn’t listen and stuck him twice more, he blew both iv’s because he has frontal lobe brain damage and it causes a serious lack of impulse control. if you stick a 5-year-old 4 times with a needle and tell him he is supposed to be ok with it, it’s already a lie. You stick a 5-year-old with frontal lobe brain damage with a needle 4 times and he will tell you he is going to kill you and try to rip off your shirt, kick you, scratch you, and head butt you. I got lots of looks, like….your the mom of this horrid kid. smh….yep, I am….
f.f. spare you the rest of the horrid details. The mri was very close to the last one three months ago. results wise. not much growth. the kicker is…john is dragging his right foot and has lost his urinary control. the dr says this could be a metastasis in the spine causing this.
Again we have half an answer and have to live on the edge of worry. I just don’t have any more to say for now. Perhaps I will post some photos in the next few days.
full of contradictions,