Hope Takes A Holiday

At 11am this morning, the neurosurgery team came into the room and discussed the results of the video EEG, the psychological testing, and the PET scans.  The doctor, who is the chief of staff of the top Epilepsy Center in the nation, told me that the results were conclusive and that Jake had generalized seizures.  This means that instead of having just one place in the brain that causes the seizures, there are many places.  This is not good news -unless you count having a surgery that doesn't work, good news.

Hope walked out the door when the staff did-
My heart is just broken- in a way that I cannot even describe-
More painful even than when Dad passed - because there was always the knowledge that the cancer would eventually take him- but this....this just hurts everything.
I am worried that I won't be able to get the tears to stop before he wakes back up- Jake has had some Ativan to help him sleep and relax after the last seizure - so I have a little time.

I can hear my dad running through the back of my mind: you don't have the luxury of falling apart, you have a family to take care of.  And I know that is true.

As I am typing this, the Nurse Practitioner came back in to check on me - apparently I am pretty easy to read.   She has his medicine ready - and they are going with a new combination based on what we saw.    I know, that is a good thing - I know they are doing what is best for him - and there is a glimmer of hope that it will give him the control that he once had.  Oddly, all I can think about is the number of people with Diabetes that I have had the same conversation with: hang on, don't lose hope, something else may work.  My head knows this is true, too- just my heart isn't buying it yet. God bless her, she is a kind soul and had a tough job this morning because she knew it wasn't the outcome I was hoping for.

There is that word again: hope
I know the plans I have for you, plans to give you hope and a future....
I allowed myself to hope in a future where Jake would be independent - where I could be independent.
I had thoughts about a life different from the one I am leading.

And as I type this, I realize that there have been some good things about today as well.  People have responded so positively to Jake - they have been so kind - and he has discovered that he is not at all alone in this.
I have met some new friends who also have kids with epilepsy.

Jake will get to keep his hair

I will go back to my previous plan which is to live in a way that Jake will be supported  - and to keep trying medications and doctors until we get it right and he gets his life back.

Oh, don't misunderstand me - I am pissed off at hope right now - thought about being mad at God, but logically, if I respect Him enough to be mad at Him, I must actually believe in Him- so being mad isn't going to help at all.

So for today, hope is on a holiday - don't ask me to believe in anything - I need a little time to recover.