Thinking back to this time last year (a different date due to Easter being much earlier this year) gives me an eerie and chilling feeling. Last year Rob, Lola and I were living in Costa Rica. Rob and I ran a medical hotel that demanded all of our time and certainly all of our energy. But even with the distractions, we began to notice something wasn’t quite right with Lola. While we didn’t know it at the time, for about 10 days prior to Easter we were watching Lola have tiny, but enormously damaging seizures. Lola was never one to make much eye contact nor did she track objects, but her eyesight was diminishing, her smile was fading and the light within began to dim. She stopped progressing physically and if anything, it was as if she was becoming weaker. She wouldn’t eat much, she wouldn’t babble, she wouldn’t play, she just had this blank and empty stare. Rob and I knew something wasn’t right, but little did we know how different our lives were about to become.
On Easter day, Lola began to have more seizures in longer clusters. Again we didn’t know they were seizures, but we were starting to have our suspicions. The worry started becoming pure gripping panic. Every time she would seize, my body would freeze and my mind would race trying to figure out what the hell was going on. That night, Lola began to seize harder than she ever had before. Again remember these seizures were more like odd muscular ticks. Her arms would reach out straight, her legs would tense up and she would be uncommunicative. But that night, Lola began to grunt because they were so strong. I woke up panicked, frightened, telling Rob something was not right. I knew in my gut this was serious, but I never would have guessed how serious it really was.
The next morning, Rob had to take a guest somewhere and I began to Google whatever words came to mind in an effort to find something that could explain what was going on with Lola. After much searching, I Googled “Moro Reflex repeatedly” and there it was…a YouTube video that saved our daughter, but also changed her life forever.
What I found was a video of a little boy who was seizing due to a condition called West Syndrome or Infantile Spasms. I knew in the very moment I watched him seize that that was exactly what was happening with Lola. So she may have epilepsy I thought. I quickly Googled “West Syndrome” and my tiny glimpse of hope turned to shear terror as I read words like “catastrophic”, “shortened life span” and “mental retardation”. The fear set in, the sobs became uncontrollable and the unknowns became unbearable, but that didn’t stop me from fighting to get Lola the quickest and best care she could receive even if we were in Costa Rica. Shockingly, I’m glad we were in Costa Rica. Lola’s pediatrician treated the case as an emergency situation because it truly was. Within four days of finding that video, Lola had a CAT scan, an EEG, was seen by a pediatric neurologist and began steroid treatment.
Lola is now 15 months old and the little fighter is still catching up due to those nasty seizures. She has worked hard to get where she is today and yet she still has a long road ahead of her. I’m proud of Lola. I’m proud of Rob and I as we followed our instincts and got Lola the help she needed. Had we waited or had the doctors not listened to us, it’s hard to say what kind of condition Lola would be in today.
As I’m writing this, the sobs won’t seem to subside. Writing about it reminds me of one of the scariest times in my life. I felt helpless and stricken with fear. As a mother you simply want to protect your child, but my child was becoming far from my reach. Every time she seized I watched a part of her fade away which makes me immensely grateful to be where we are today. It has been a slow uphill battle, but we are getting there one day at a time.
This was Lola last year on Easter.
This is Lola this year.
What a difference! What a remarkable, uplifting, inspirational, beautiful, blessed and amazing difference!!
Happy Easter to All!