A Challenge

There’s just something about feeding and children that is inseparable.  Or maybe it’s feeding and motherhood? Regardless  I had a case recently that’s been one of my more challenging ones personally.

Max was born with a brain condition that didn’t allow him to interact with others.  He was blind and deaf, so as you may imagine, touch was not a comforting thing, but an intrusion to his dark silent world. The part of his brain that thinks, remembers, or feels was not formed.  Basically he was living, but not experiencing.

Max’s mom did an amazing job raising him. He ate and slept and cried.  He never smiled and always screamed when being held. He never spoke and his eyes were always closed. His little body grew until one day at age 3 he quit being able to eat.

His mother took him to a children’s hospital where test after test was run to determine why max couldn’t swallow anymore.  The doctors finally told her, “his body has just outgrown his little brain.”  The choice was now hers, should she have the doctors put in a feeding tube or let him live out the rest of his natural life as he was able without medical intervention?

Bravely she decided not to intervene with his disease course.  So he came into our hospice care for the last weeks of his life.

Everyday when I visited Max I had to do a lot of internal work. Emotionally I’d see a little child with an otherwise healthy body asleep, with little thin arms and a dry little mouth. A part within me said “FEED THIS CHILD” and I’d have the urge to find a bottle and at least try to let him eat.  I’d watch his heart beat through his shirt and smooth his hair and pray that we weren’t causing him pain.  Logically I’d have to tell myself over and over again that even the smallest amount of milk would cause him to choke and cough and have more discomfort.  I also had to force myself to remember his condition.  This wasn’t my daughter that I was starving to death, this was a little boy who had lived his life in the dark, in silence, with an occasional intrusion of touch that frightened him.  A boy who’s brain had reached it’s limit on what it could support.

I can tell you that the longer he lived without food or water, the harder each visit became.  In total, he lived nearly 3 weeks with us.

3 weeks that I tried to figure out why I felt so torn about his eating, when almost every disease process we can get, ends with days and weeks of not eating.  Everyday I treat people dying of cancer, of liver disease, of dementia or heart disease, who all quit eating.  It’s natural.  So, was it his 3 year old age or the inner mom in me that found it difficult?  Still trying to sort it out….

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