Thursday, November 3, 2016

Home for now

We made it home tonight!  It was a long, long day.  Not that much was happening with us, other than a crazy, intense blood test that took two days to plan for.  That was done by 10 this morning but then we had to wait for rounds and for the biopsy report to come rolling in so it was late in the day by the time all the loose ends were tied up.

While we were waiting for pharmacy and discharge papers, Shelbie sat in the rocking chair by the window and I sat across from her.  It might be one of the saddest moments of the year.  I asked her how she was feeling about coming home, about not being able to drive for a couple of months or take a shower alone and all the other things that transpired this week.  To be honest, I haven't even sat still for a minute to think about it myself.

She immediately broke down and looked at me and said through her tears, "I don't ever want to forget you mom!  I don't care what else happens to me, I don't care if I die, I don't want to keep living if it means I forget you."

Those words were the most real things I have felt all week.  I have been successful in being disconnected through this whole ordeal.  Only once, one late night did I start feeling a little panic.  It took all I had to keep from crying.  I knew the nurse would come through the door any minute I didn't want us to be unraveling before her eyes.

The doctors didn't spend too much time on the problems they found in Shelbie's brain but if you have the brain of an 80 year old, and you are only 24, you may have a problem on your hands.  Dementia is the natural course of aging.  Oddly enough, mitochondrial testing the kids had years ago came back with some dementia markers for all three kids and Shelbie's memory has gotten so much worse over the past two years.  More times than not, she comments on how she feels 'lofty' and that her brain is floating and not keeping up with her eyes.  I'm not sure if any of this is related but it's a scary thing.  I didn't know that after everything Shelbie has been through, that was the thing that scared her the most.

I hope she doesn't forget me either and the very thought makes me so sad.

Of course, she is scared of other things too.  They aren't sure if she will have another event.  They aren't sure if the measures they are taking will protect her enough.  All we can do is hope and pray.  She said, "Every day we wake up could be our last day!  None of us can take a day for granted.  We all have such complicated and bad things happening, any one of us kids could die at any moment."

I was glad that she was getting her thoughts and worries out there but boy, was it tough to hear.  Every time Spencer is out of my sight, I worry.  His darn heart is just a mess and it worries me.  It worries me that he is either experiencing tachycardia or bradycardia, there is no steady, normal beat. He drove to Utah this morning for work and missed being a part of an accident by a hair!

Now, when Shelbie leaves for work, I will have to try hard to not panic.

It was even hard to say goodnight.  This past week, nurses were monitoring her, checking on her and I was sleeping right beside her.  Now, she's on another floor of the house and it's hard.

The reality of life now is starting to hit.  I have a list a mile long of things to get done tomorrow and another mile of thoughts to sort out and work to catch up on.  I don't imagine the weekend is going to be a very restful one and guess what...we do this all again in 4 more days!!!  Another trip to Utah...another couple of days of testing for the kids!  

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