"D-Day" (Diagnosis Day): The Day Epilepsy Entered Our Lives
"This probably means she won’t be able to get her driver’s license," I remember saying to my husband when we first received our daughter's epilepsy diagnosis. At the time, that was my biggest concern. Juniper wouldn’t be able to be a "normal" teen with a driver’s license.
I look back on those first few days and can't help but laugh at how blissfully unaware I was. I had no idea what an epilepsy diagnosis would actually mean for our daughter and our entire family. Up until that point, my only understanding of epilepsy was what I had seen in movies: convulsing, tonic-clonic/grand mal seizures.
In a way, maybe that's why it took me a while to recognize the odd movements Juniper was having were actually seizures. Rather than full-body convulsions, her seizures presented more like a startle reflex in infants. They didn’t seem catastrophic, even though everything I researched told me they were. Even the name seemed mild: infantile spasms.
However, the more questions I asked and the more research I did, the more I began to grasp the gravity of our situation.
An epilepsy diagnosis: infantile spasms
"Infantile spasms is a severe form of pediatric epilepsy," the attending neurologist informed us. "It is imperative we start treatment right away to limit the impact this could have on her development."
In late summer 2020, sitting in a small hospital room with my husband and 6-month-old daughter, the realization that our lives would never be the same began to sink in. Not only would Juniper never drive, but she may also never walk, never talk, and never have the life we had always pictured she would have. Our dreams for our daughter came crashing down.
What an epilepsy diagnosis means to a parent
As a parent, an epilepsy diagnosis for our child meant so much more than "just seizures." It meant kissing her goodbye for MRI scans and CT scans. It meant holding her down during blood draws and EEG hookups. It meant learning to inject her chubby baby thighs with high-dose steroids. It meant brief moments of hope when medication began to work... only to have our hearts drop when seizures returned a few weeks later.
An epilepsy diagnosis meant two brain surgeries, both with excellent odds for seizure control, but for Juniper to end up on the wrong side of statistics time and time again. It meant trying and failing 9 different medications, all before our daughter was 2 years old. It meant celebrating her 1st birthday in the hospital hooked up to her 10th EEG and celebrating my birthday by her side after her VNS (vagus nerve stimulator) surgery.
There has been nothing good or easy about an epilepsy diagnosis. There is no silver lining. There is no "at least." Epilepsy has destroyed our sense of safety and security. It has shown us that you can do everything right, seek the very best treatments, and still, there may be no answers and no cure.
Moving forward with strength
No one knows why Juniper is still having daily seizures. No one knows why medications haven’t worked. No one knows why the brain surgeries with excellent odds didn't work. An epilepsy diagnosis has meant accepting uncertainty and living alongside seizures.
D-Day was the day my world came crashing down. The day epilepsy infiltrated every aspect of our life. However, though it was one of the worst days of my life, I am proud of how we’ve kept going, adapted, and discovered a strength we didn’t know we possessed. We didn’t let epilepsy destroy us. Rather, we kept putting one foot in front of the other to rebuild the life that came crashing down.
Though it looks different than before, and certainly not like we planned, it is still a life with beauty, joy, and so much love.
Have you taken our In America Survey yet?