No parent or family can ever be prepared for the news that their child has been diagnosed with a chronic illness. We can read all the parenting books we like, we can go to as many mommy groups as we can squeeze into the precious time we have, we can investigate everything that will impact our children from the pre-school we chose, to the food they eat, but we can never prepare for a doctor telling us that our child is “broken”.
I remember back to September 2011 when we first became aware that Emily, or precious, sweet little 6-year-old daughter had this “thing” called Epilepsy. We arrived early at the BC Children’s Hospital, to meet with the doctor. We had done our research and thought we had the answers. The first thing the doctor asked was “what do you know about Emily’s seizures”…to which I so naively answered “well I know it’s not epilepsy.” There was a silence in the room…the doctor looked up at me and said “actually that is not correct, Emily’s seizures are epileptic”.
I don’t remember much of what she said after that. I was in shock. How is it possible, that me, a university educated, smart person, who had combed Google searching for answers, actually came to the conclusion that Emily’s seizures were not Epilepsy? It didn’t make sense. I can remember the conversation moving from “what causes this?”…”we have no idea, it is idiopathic in nature” to “this is strange that your pediatrician would prescribe her this drug therapy only once a day, we ordinarily prescribe this three times per day”. Well, that certainly was reassuring to know, since when we filled the prescription, the first thing the Pharmacist said was “Huh, that’s strange, I wonder why your doctor is prescribing THIS drug”. It also explained why our daughter had suddenly become a walking zombie!!
And so began our journey in navigating the mystery of our daughters new diagnosis. It wasn’t until the following summer, after many bumps in the road, which I will share with you along the way, that we actually discovered that our daughter had, what the government would classify as a “chronic illness”. No one mentioned to us that along with these seizures that were captivating her small little body, that there were a host of side-effects such as learning delays, personality changes etc…
As I stumbled through this period of uncertainty, a period with more questions than answered, the one thing I yearned for was just one person who understood what it was I was going through, what I was feeling. Someone who could and would guide me to uncovering the answers and energy I needed to get through those days that seemed so discouraging.
I was lucky to start working with a Life Coach shortly after our family’s journey began. I didn’t start working with my coach with the intention of using his services to help me navigate this new aspect of my life, but ultimately, being the great coach that he is, I did use him and he helped me tonnes. He helped me step back and get perspective. He helped me implement systems that kept me organized and sane. He helped me learn to create the environments that I needed in my life to manage this situation like an expert, as if I had done this before.
Our journey is far from over. Emily still HAS epilepsy and we are reminded of the fact that she lives with a chronic illness each day when we ensure she takes her medication and spend countless hours preparing her food for the Ketogenic diet. It hasn’t been easy, and just recently I had to fight through my tears and find the humor in her view-point when she said “mommy, daddy, out of all the tests I have had, I think the MRI is the best! Do you know I got to watch a Barbie movie!!!” This, coming from child who has had more blood work done than I can count, countless EEG’s and a spinal tap that landed her in the hospital for five days, missing the last days of grade 1.
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