When You're in the Land of the Undiagnosed

I answered a phone call from my daughter’s pediatrician. This wasn’t the first time she called to discuss my daughter’s health, but for me, it was supposed to be big day full of answers and the beginning of a new plan.

As a lump formed in my throat and tears ran down my cheeks, I tried to comprehend how we were likely still stuck in the unknown. The land of undiagnosed.

My fight-or-flight response kicked in, and I found myself arguing with the one medical professional I have never doubted had my back. How could this be? How could we go from “we think we have the answer” to “we are not so sure”? She listened intently and tried to provide the feedback I so desired, assuring me there were next steps, there were doctors willing to try treatment plans and there was another appointment just mere weeks away that may help us make sense of this or at minimum provide a path we had considered but dreaded.

I heard our pediatrician’s voice crack and diversion slip in, and I knew she not only was advocating for us but was and is just as frustrated as we are. She sees what we see and even notices things in our daughter that have become familiar and reminds us they are not of the norm. But she can’t provide the answer.

I hung up the phone, and anger and disappointment took over the afternoon. I had been taught my entire life that if you are sick, you go the doctor. How was it that this age-old practice wasn’t yielding my daughter any satisfactory results? Had I done something or not done something to prevent someone from finding the key to our little girl?

See, if you just met our little ray of sunshine, you may not even know she has episodes of unknown origin daily, that she fatigues easily, that her hands stick after little activity, that she gags and chokes and won’t eat for days in fear it will happen again, that “buggies” crawl all over her, that what you perceive as a tantrum is in fact most likely a seizure or extreme pain.

By now I am used to it. I understand that she knows no different and that life to her is “normal.” But I can’t help but think I am failing her. I can’t help but wonder if I push hard enough or look longer that I will find the one doctor who gets what is going on. I wonder if we should go back to the break from the medical world we took in the past and just accept it for what it is. I know there is no worse feeling than watching your child collapse while out and about and all you can do is comfort her.

I question my sanity and have a hard time enjoying the good days as I fear the bad. I pray we are providing her a life that allows her to be herself and enjoy all she is capable of. And so I Google and read anything and everything I can get my hands on, only pausing to wipe the next set of tears out of my eyes. Then we attend the next appointment with folders, videos, labs, ideas, questions and hope.

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