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To the medical professionals who listen, and those who don’t

Ben’s medical problems emerged in his first year of life, and have been continuous throughout his 10 years of life.  In parenting him, I have become an expert.  While I certainly don’t know as much as doctors about the individual diseases, I know more than anyone about the holistic Benjamin.  There are innumerable questions about his health and ways to optimize his care that aren’t in any chart, they’re all in my head.

Many healthcare professionals have learned this secret, and readily tap into the wealth of information that I’m eager to provide.  To you, the ones who listen, I thank you.  My son is more than a list of diagnoses, and you get that.  With your medical expertise and my parenting expertise we can provide exceptional care for my child, maximizing outcomes and wellbeing.  I want you to hear how valuable your open minds and adaptability are, and how very much we appreciate you.  You are truly a blessing to us, and you make office visits and medical procedures streamlined for us.  You provide the highest level of care when you team up with us. 

Some healthcare professionals persist in a mentality that suggests that your education and experience trumps mine.  You sometimes outright disagree, which I actually appreciate because then we can dialogue and work through the differences.  It’s when you nod to my face and then do things your own way that you undermine care.  It’s those times that we need to bring to light. 

I want you to know that I can tell you the best place to start an IV, exactly how he reacts to numerous medicines, and which one work best, and which ones have less desirable effects.  When you think you know better it can cause frustration, loss of trust, and adverse effects, and I almost always find out.

So, dear medical professional, I want you to understand that your power and credibility multiply exponentially when you work with your patients. I want you to know that we are longing to share our wealth of knowledge with you, and to receive more knowledge from you.  When we team up together we can obtain ideal outcomes for Benjamin and many other complex patients like him.

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