Friday, September 13, 2013

When Doctors Won't Listen

Listen to my words, you wise men.
    Open your ears to me, you intelligent men.
~ Job 34:2, NOG ~

I can remember finally bringing home our jaundice baby boy after the continual bilirubin heal pricks had returned him to the hospital NICU.  Almost immediately afterward, we had his first hematology clinic visit with our entire family of 4 sitting in a small exam room for 5 hours, becoming painfully acquainted with the world of hemophilia.  We left that appointment with the bible of bleeding disorder books, Raising a Child With Hemophilia: A Practical Guide for Parents.  Over the next week or two, I stayed awake into the wee hours of the morning devouring every word on every page.  I devoted myself to becoming an educated, wise advocate for my son, transferring many of the skills we had learned in our infertility treatment to our son's critical care.  The in-person training we received from our clinic's nurse coordinator also buttressed what I was reading, teaching me to stand up for my son and push back in the medical system.

Thirteen years later, I would like to say it has become easier, but it really hasn't.  Those same medical professionals who taught me to know what's best and defend my children are now increasingly dismissive when I push back against or question their course of treatment for our son.  There is no room for a mother's intuition, despite the fact that they are the ones who taught me "no one knows your child like you do."

The fact is that advocacy is a permanent part of our assignment as parents raising awesome kids with special needs.  We never get to coast.  We must be ever-vigilant.  If we become complacent in our roles, it could literally cost our children their lives.  This is a stressful calling, but one we do well to accept. 

When we learn to accept our role as advocate for our child, we begin to approach life differently.  We absorb information like sponges, so that we can make wise decisions.  Being observant and noticing small, critical variations in our children becomes habitual for us.  Building networks with other parents walking the same path, we learn what other practitioners in different areas are doing for their patients.  We become stronger, knowing that we can push back rather than taking our doctor's decisions as gospel.  And we never forget that every hospital has a patient relations department.

I get weary, especially of late.  But fellow-parent, let's keep cheering one another on to the finish line.  Our kids are depending on us.  God has called us to a worthy role.  Let us advocate with His help and to the best of our ability.

PRAY:  Lord, thank You that when doctor's don't want to listen to me, You always will.  Strengthen me to stand up for my child when needed.  Holy Spirit infuse me with discernment, so that I will know when to push and when to go along with a treatment plan.  In the final analysis, let me be found to be a parent that was their child's best medical advocate.

Photo Image Courtesy of 123RF

1 comment:

  1. This is a REAL problem for ANYONE with serious and chronic medical issues! I think the medical professionals, i.e. doctors, grow weary and lose sight of the forest for the trees and it goes from there! Been there; done that! Am there; doing that! Having an advocate is so essential if and when one is available! Keep pushing!!!