I have learned through my 2 daughters’ distinctively different head injuries, concussions versus TBI, that if you have seen 1 brain injury, then you have only experienced 1 brain injury. No 2 brain injuries are alike.
I have spent over 20 years designing clinical research trials in many therapeutic areas and never have I encountered such ridicule, misalignment of treatment recommendations, and pure ignorance from the clinicians who did not want to dig deeper and listen to my daughters’ cases. It was a test of my patience, but more importantly, a test to my commitment to understand what has happened to my daughters and how to help them. Through my journey, I want to share this knowledge I have and help you.
Person after person has asked me how did I know what to do. I explained that I believed it was because of my training and my career. But now, when I take a moment and truly reflect, I didn’t know what to do; but I kept on digging. I couldn’t accept recommendations and answers that made no sense. When a clinician only spends 5-10 minutes with your child and dismisses what you are explaining to them, and ignoring the research publications you are bringing them, it’s time to take a stand.
We know that if a body is given time to rest and the right environment, it will heal. So I stayed true to my knowledge, my experiences, my beliefs; but most of all I stayed true to my daughters. There were times I nearly gave up, I didn’t know what else to do, but somehow after I took a break I came back with a new perspective. I never quit. It was my daughters, I couldn’t quit. I was all they had.