Complicated Hope

Last Friday, January 27
The 18th Anniversary of a moment that changed our course as a family.

It was a right hemisphere mid-cerebral arterial infarct.

We called it “the Stroke.”

We dated time as Before and After “the Stroke.”

She survived. Against all odds. She has done more, seen more, talked more, traveled more, laughed more, grown more and loved more than doctors ever thought she would.

And we’ve cried more, grieved more, battled more, and slept less than we ever imagined.

On that Anniversary Friday, Ashley went for an MRI at Northwestern Medical in Chicago.  It was the MRI since she was probably 5 years old. Due to her body movements, she had to be fully sedated so that a 90 minute event took 5 hours.

Then we waited for results.  It was not only a baseline for post adolescence, it was also a pre-evaluation for deep brain stimulation surgery.

On Thursday, we received the call – she is missing too much brain matter plus that which is left has too much scar tissue to make her a candidate for surgery.

Ashley was thrilled. She smiled all afternoon and was heard saying, “I’ve told you all along you would not operate on my brain.”

I was hurt. “More brain is gone than we imagined.”   And a tool that might have given her relief from pain was off the table.

It was the grief again.

Now it’s 18 years and one week past her stroke and her arm has gone into dystonic spasms for the 4th time in 3 weeks, requiring very potent drugs. And her body is not responding.

Tonight I will sleep near her to monitor oxygen and pulse since she has had 3 different medications.

I’ll do my job. And I know God will do His too.

“But when Jesus heard it, he said, “This sickness is not to death, but for the glory of God, that God’s Son may be glorified by it,”” John 11:14