My daughter Olivia was diagnosed with the most severe form of life-threatening epilepsy in November of 2021, Lennox-Gastaut syndrome. This was a known possibility since she experienced a severe traumatic brain injury at birth resulting in seizures that evolved into infantile spasms all before her first birthday. We were learning to cope with the facts and still hope for a miracle. But even the pre-warning couldn’t help cushion the diagnosis.
It’s a stressful life as a caregiver, remembering multiple medications, timing seizures, and communicating with doctors when all you want to be is just a mom. Anxiety ran high in the early days as every little twitch caught my attention as a possible seizure. As time progressed, we have been able to learn more about Olivia and what her seizure types look like, and her triggers.
I used to always hear, “I can’t lose her,” echoing in my mind until one day I read about another mom’s journey surrounding her daughter’s LGS diagnosis. She mentioned we can either spend our time worrying about our kids or utilize that time to make positive memories with them. That was all I needed to shift my perspective. Being aware of the small things is what makes me feel whole. To be aware of how your kiddo looks at you, or what new sounds their mouth is teaching them to make, or how big their foot grew today.
We know we’ve been through traumatic diagnoses before but we’ve also experienced miracles with her. I’m not going to lie, this chapter feels real hard right now, but we’re not going down without a fight. My husband and I will continue to network to find the best treatment options for her, we will continue to advocate for her, and most importantly we will continue to love her. With confidence, love, and care I can say our journey isn’t finished yet. Seizures for Olivia have gone up to +100 per day while other days she has been seizure free, whether from medications or the ketogenic diet. She has taught us to live day by day in the moment. This journey requires grace and a grateful heart.
While I am thankful for the treatments and community available, I know I am not the only one wishing for a cure and longevity of life. I have hope that one day we will be the ones posting a “100 Days Seizure Free” picture.