I have been in a quiet spot in the last week. Appointment wise, were back to the standard 5 appointments a week. Which is great for us. We have an amazing network of support. I have help with Hope and I can get what I need to done.
That being what it is, I found myself in a new sort of place. I was struggling and didn’t really understand why. I will say the mri results last week blew my mind. I thought for sure Dr. Kang would say the cancer was growing and we had to now make decisions about what to do. When she came into mri and told me everything was the same, I was dumbfounded. We had seen nausea and vomiting, changes in his muscle tone, and increased aggression. I had expected a report of the cancer had come back. I was stunned. I walked out of recovery (from anesthesia) with my screaming child, absolutely dumbfounded. What the heck had just happened there?
Aparently frontal lobe dammage in the brain can mimic brain cancer returning. Plus a few bonus disadvantages. You see, The frontal lobe controls motor skills like hand/eye coordination, conscious thought, emotions, and even your personality. As a result of a brain injury, frontal lobe damage may impair your attention span, motivation, judgment, and organizational capacity. Yeah, the frontal lobe is dammaged quite a bit. So, as the brain shifts and the cavity where the tumor used to be collapses, the frontal lobe becomes more deformed, along with most of the left side of his brain. It is a big deal. A game changer.
Lets just say for a minute that John John survives this brain cancer that nobody ever has. hummm….. yeah, not going there just yet. That is way to far in advance of our present state. So, the long of the short is that Dr. Kang is going to find a behavioral specialist willing to work with John concerning the severe frontal lobe damage to his precious little brain.
This brings us back to the original topic. I was dumfounded. I was absolutely in shock when the dr. said nothing had changed. I actually had prepared myself for the worst news a parent could possibly get. And, It didnt come. PRAISE GOD!
There was extreme emotional confusion that followed. I did not know what to do. After all, everything was ok. I can’t seem to remember what to do with ok. What do I do when I dont have to watch John so closely? What do I do when I dont care to wonder, When will it all turn for the worse? What do I do when I no longer want to ride the train of uncertainty, but choose to just be in the moment? That is a hard spot. I want to be in the moment and I just need to slow down to remember how. When I say be in the moment, maybe I should say be present in normal life. I can be there in the moment. But, being present in life is another hurdle.
I have decided to let go of the worry and anticipation associated with John Johns condition to the best of my growing ability. As smart person would, I sought guidance. The story tumbled out slowly. My present, my feelings, my expectations, my prayers, my thoughts, my hope, and my fears. It came down to me needing permission to be ok with the fact that even if i treat life as normal, and John John dies….It is ok. We can be ok with our normal. And if John dies. I will still be ok.
Yes grief will happen. That is ok. But for now. the realization of that truth and permission to act as I would if he weren’t ill or dying is enough for me to feel relief. I need to be ok with the present. The present is where we live. It doesn’t encompass expectations or eventualities. It is simply where we are right now.
My friends reassured me that it was ok that I was willing to accept death. It put the present to peace. I feel free… Now I can live for the moment and day and then week…. you see, it is a precious commodity we have been given. This attitude of expectation and taking life for granted. Not that I want to do that. But, I have to feel as though I can move past the fear of what I am living. The only way I could do that was seek wise counsel and understand that I am normal for being ok with Gods plan either way it should play out.
Love each and every one of you, Faith