Sunday, July 8th

Garak's little body is strong.


For many consecutive days we were told that Garak wouldn't survive the night.  We were told his breathing would continue to weaken and his heart would continue to slow.  We were told the damaged portion of his brain would result in necrosis and spread to the good portions of his brain.  We were told he would aspirate his own saliva, contributing to choking or leading to pneumonia.  We were told his organs would react to the lack of brain signals, and would begin shutting down.   Yet he survives and appears to be stronger. His heart rate and oxygen saturation are healthy and lungs sound pretty good.    


We find ourselves questioning everything we have been told.   It was easier to withhold feeding if his death was imminent and food may cause discomfort as his body shuts down.   There was some comfort in knowing his body was making this decision and not us.   If he wants to live, and appears to be improving, shouldn't we resume feeding him?

They may have been wrong about his body, but the end-all factor is his brain.   The hospice team asked our neurologist to call.    She spoke with Jailyn and offered to go over each image of the MRI, and explain what functions were affected by the damage.   The doctor told Jailyn that Garak's brain wasn't just damaged, it was "very, very, very damaged."   If we fed Garak, he could last a couple of years, but he would never improve.   He may even begin to twitch and shake uncontrollably as he grew.  This put us back into the frame of mind that Garak is not coming back. If we held him onto this existence, the image of the beautiful, sleeping boy may be replaced by someone in pain.   It's now completely up to us to determine how long Garak lives.

Jailyn and I have gotten along pretty well through all this.   We fight about how long to water the lawn, but our disagreement on whether to sustain our child has not led to any real quarrel between us.  I understand that as a mother, she is programmed to protect her children.  It's just a matter of realizing if sustaining Garak for a couple of more years while his body changes, his muscles shake, and he faces infection all the while his mind remains absent, is really protecting him.

Yesterday, Jailyn decided she would continue this course.  She took the decision to not feed him with her to the temple, from where she prayed.   She returned with a calm feeling, that we were making the right decision.  She felt that Garak indeed wanted to return to his Heavenly Father.

It has been ten days since he has been fed.

(Garak with cousin Tessa)