Monday, March 7, 2016

CONTENTIOUS - The Medical Edition

"The Lord himself will fight for you. Just stay calm."
~ Exodus 14:14, NLT ~

When our infant son received the rare diagnosis of Hemophilia A - Severe at birth, we were instantly enrolled in an immersion medical school on this bleeding disorder and taught the following:
  • Basic Triage - What is critical when it comes to a bleeding episode and what is not?
  • Identifying an internal bleed - How do you tell if someone is bleeding internally in various parts of the body?
  • Never wait longer than 20 minutes in an emergency room waiting area.
  • NO ONE knows your child better than you do.
  • Hemophilia behaves differently in each person, even if they have the identical genetic mutation.  How does it behave in your child?
  • Training others, including babysitters, family members, and educators on how to care for our child with hemophilia.
When our son was only a month old, we were connected with another family who had a son with the same diagnosis.  The mother was a force to be reckoned with!  And while I was so grateful for her encouragement and support, I found to be her approach with others to be abrasive.  In fact, it inspired me to want to lead my fellow parents to a better way of respectfully asserting ourselves.

Fast forward nearly 16 years, and while I'm still a huge proponent of respectful assertion, I can much better understand those parents who come at advocating for their child with guns a-blazing. You see, after we were taught all of those things listed above, we were promptly taught by the doctors' actions:
  • You must have done something to cause your child's bleeding episode.
  • You're not parenting the right way.
  • We know better than you do.
  • You can just wait.
  • You're just irrational and must be reading something on "Dr Google."
I can remember one such occasion with one of my other medically-challenged children where she was even scheduled for the wrong surgery!  I got a call about it when I was half-way across the country and ended up tearfully losing it with the specialist's assistant.

On another occasion, I was told in error that this same child had a certain diagnosis for 11 years.  It wasn't until I began questioning and pushing that I learned that our treatment center hadn't done the testing that they had told me they were doing, but had done a lesser version which yielded erroneous results. The more involved testing was finally done 11 years later to determine the correct results.  I have to believe that a more aggressive parent than I would have responded in more litigious and negative ways than I did.

All of this to say that, there are REASONS why the relationship between parents and their child's medical staff are so very contentious.  We go from being our child's first line of defense and greatest champion to being diminished and demeaned by medical staff.  We want to be part of the problem-solving team, but are often shut down and shut out when it comes to disease management and care plans.  Doctors often treat us as if we are subject to them rather than realizing that they are working for us.

During my years of dealing with countless medical professionals, I have even had one doctor who had the audacity to tell me that he didn't have time to talk to patients, that I was disturbing him, and that from this point forward I would have to agree that I would only talk to only his staff by phone.  The next day I carefully composed a letter informing the medical director of his facility of what had happened.  This doctor was no long employed by our family.  If you want to work with us, you must work as a team.

So what is a parent to do when certain doctors and therapists treat us in such unprofessional ways?  Exodus 14:14 has the solution for us:
We can all look back at the case of Justina Pelletier out of Boston Children's Hospital and shudder with fear. However, Justina's parents operated by the Exodus 14:14 model.  Rather than behaving with public venom and hysterics, they stayed relatively calm, stood firm, and watched God move on their behalf.  While it was a horrible ordeal, God has used it to reveal a huge problem in this nation regarding parents' rights, and hopefully, their lawsuit against Boston Children's Hospital will set precedent, preventing this from happening to others in the future.

Again, harkening back to last week's post on the contentiousness between parents and school staff, we MUST follow God's mandate to treat others with the same respect with which we wish to be treated.  Yet, when that respect ends up being only one-sided, continue to love like Jesus, stand firm, stay calm, and let God fight for you.  The same One who shattered the power of the grave through His death and resurrection is surely big enough to handle these relationships when they become adversarial.

PRAY:  Father, thank You for promising to fight on our behalf and contend with those who contend with us.  Let us remember that we derail that promise when we fail to follow and obey, doing things your way.  Calm our anxious hearts.  Remind us to treat others with respect even when they are disrespectful to us.  Remind us to stand firm, and trust in You alone.  Thank You for being bigger than our most difficult relationships.

*For further encouragement, hop over to the Not Alone blog to read Barb's post "Doctor Mom."

1 comment:

  1. You nailed the two components of wise advocacy for our kids. Thanks for adding this to's Tuesday special needs link share.