Moments with Jacob: BROKEN CRYSTAL BALL, SHINGLES AND SUMMER COMING TO AN END

Sunday, August 16, 2015

BROKEN CRYSTAL BALL, SHINGLES AND SUMMER COMING TO AN END

We sure have been on an emotional roller coaster the last couple of weeks. A week ago, I broke out in shingles. This is my 4th time in the last 10 years. It is always stress induced, always related to our boy. Nerve pain is pretty painful. It's a good reminder it's time to slow down. Unfortunately, my life doesn't always have an on/off switch button.

We did have a good appointment with Jacob's liver doctor this week. He didn't agree with Jacob's mito doctor that Jacob's liver is an indicator of progression of disease. Most likely the abnormal liver tests are medicine related. It could also be related to his ulcerative colitis. Jacob has a functioning liver. We have a plan in place, and we will work together to figure out what is going on. It was a good day for us.

The following day it was time for Jacob's care conference. So many emotions, so many theories, but by the end of the day no one but Jacob knows his future. Dr. E said her crystal ball has long been broken, and so is mine. I can only follow my heart, and in my heart our boy still has a lot of fight. He is a kid, and I would like him to be a kid for as long as he can. I want to fill each day with as much joy as I can for him.

Yes, Jacob's brain MRI is worse. Yes, Jacob's disease has progressed over time. But since no one knows what the future will hold for Jacob or any of us, we will go on living. We will enjoy our boy, we will enjoy each other. We will live one day at a time, and continue to enjoy each moment with Jacob.

I do feel his doctors jumped the gun this time. I am not sure what they truly accomplished for Jacob, but a lot of grief and stress for us. I do believe things happen for a reason, and if anything they reminded us of living each day as if it's our last.