10.09.2019

10 years deserves a word

They told us it would be a long day. They warned us we'd be the first in the waiting room and the last to leave.


When a late night emergency surgery swooshed in, we thought maybe we wouldn't be the last after all.


We were wrong.


Not a soul was left in that waiting room with us in the end. Not a living soul. The last paid employee had left for the night and shuttered the lights, not fully, but mostly. So we sat there, waiting in the dim light with a dim hope in our aching hearts.


Eventually, Jonathan went back to the "employee only" section to see if we could learn something, anything. He heard that the surgeon had nearly finished closing Trevor up and we'd soon be able to see him again.


The vision of his swollen face, lying so still, all wrapped in white, an almost angelic glow about him, that vision will forever be seared on our hearts.


They told us it would be a long day. And it was.


In some ways, that long day hasn't ended. We continue to live that long day beside him as he continues to grow into his own and we learn what that means. We remain so grateful for all that his surgery has given us.


As we found him after Phase Two of his Left Subtotal Hemispherectomy 10/9/2009




7.24.2019

in which he shares his heart, and i cry

Recently we started meeting with a Talk Doctor (aka psychologist) for Trevy. My heart nearly drowned in tears when she drew this chart and asked him to show her how much he worries about his seizures.


The dot on the left represents how much I thought he worries.


The dot on the right represents how much he actually worries.




I had no idea.

💔💜

sorrow and suffering, unwelcome but chosen and necessary companions

"Go with Sorrow and Suffering, and if you cannot welcome them now, when you come to the difficult places where you cannot manage alone, put your hands in theirs confidently and they will take you exactly where I want you to go."  
- Hind's Feet on High Places


There is a part of my heart that loathes sharing the bitter moments. There is another part which believes it to be deeply important.


Sleep should bring peace and rest and relief from the worries of life. Sleep is said to be healing. Yet, for Trevor sleep has grown to be a time of turmoil and the very fight for survival. He didn't wake this morning healed and refreshed. Nor did I. I woke discouraged. 

Because it is discouraging for rescue meds to gnaw the heels of nearly a month of seizure freedom.


It is discouraging when your son, with his precious, child-like mind expresses that he doesn't understand why he has seizures and wishes he knew why.

It is discouraging to watch him struggle through the pharmaceutical fog which brings elevated emotions, confused thoughts, jumbled speech, and marrow deep restless exhaustion. 

Epilepsy is discouraging. 

Like Much-Afraid, our chosen companions are Sorrow and Suffering. Epilepsy is discouraging, but this is the path we're called to tread and so we must put our hands in theirs and Trust.


"The only way is by learning to accept, day by day, the actual condition and test permitted by God, by a continually repeated laying down of our own will and acceptance of his as it is presented to us in the form of the people with whom we have to live and work, and in the things which happen to us. Every acceptance of his will becomes and altar of sacrifice, and every such surrender and abandonment of ourselves to his will is a means of furthering us on the way to the High Places to which he desires to bring every child of his while they are still living on earth." 
 - Hind's Feet on High Places