Bianca’s Story
I will never forget that moment. The moment I opened Bianca's brain scan report. The moment my whole body sank. The moment I read those words..."abnormal awake/asleep EEG due to the presence of focal epileptiform discharges."
Before the neurologist had even called us with a diagnosis, I knew what this meant.
The unexplained reason for all of my child's concussions was not because she was a quirky, silly, spirited, fun-loving and sometimes clumsy little kid. The reason for her concussions was no longer unexplained — the reason for her concussions was due to epilepsy.
Reading these words on paper still shakes me to my core.
Although this life is relatively new to us, it feels like we have been treading these waters for a lifetime already!
The overwhelming amount of appointments, hospital visits, scans, MRIs, bloodwork, phone calls with doctors and endless hours researching anything and everything I can to help make sense of our NEW normal is nothing any child or parent should ever have to endure.
This isn't the life I had imagined. This isn't the life I signed up for, and this definitely isn't the life I wanted for my child!
But with each passing day, what I am beginning to realize is that you can miss your old life.... what it "shoulda, coulda, woulda" been. You can hate the change that epilepsy has brought on to your child and to everyone involved, but you can still love your new life and all the strength that it forces upon you; all in the same breath!
From the moment I held my babies in my arms, I knew the one thing I wanted to instill in them was that they were strong, powerful and completely capable of anything they desire!
All my life, I wanted freedom! Freedom to venture out on my own. Freedom to have the ability to try anything and everything; and freedom to truly live life to the fullest, even if that meant making a few mistakes along the way. What I have learned is that nothing in this world is a mistake. With every new task, relationship, job opportunity, and venture, nothing will ever be a "mistake". Life is full of lessons and it is our job to figure out what each of these lessons is trying to teach us.
So, with Bianca's epilepsy diagnosis; "What is my lesson?"
My lesson is to find my voice again! My lesson is to dig deep and teach her not to be fearful of this diagnosis! Epilepsy does not define who she is! She IS NOT epilepsy; she HAS epilepsy! My lesson is to teach her that she is JUST as capable as any other child her age and that her opportunities will be ENDLESS! My lesson is also to help her learn how to advocate for herself! To listen to, and be able to TRUST in herself! Right now, my lesson is to spread the message that epilepsy is not just dropping to the ground from a convulsive seizure like we have been traditionally led to believe.
Epilepsy can be so different for so many, depending on what part of the brain the disease has taken over.
For Bianca, we are still trying to figure all this out. Right now, we know that most of her seizures cause her to instantly lose control of her limbs and drop to the ground, hence the many concussions she has suffered. But she also has seizures that cause her to stare off, so many people think she is daydreaming or not paying attention to them. Then there are her nocturnal seizures, which I have yet to even begin to recognize or understand, yet ironically they are more active and prevalent on her brain scans than her awake seizures.
Every seizure can be so different, which is why it is so important that we spread the word about the signs and symptoms of epilepsy.
What is common for all seizures and what people don't see is that epilepsy is not JUST seizures; it is the intense feeling of brain fog, debilitating exhaustion, confusion, the need to sleep for an extended period of time, memory loss... sometimes seconds, sometimes it could be days. The need for people to repeat things, often many times because their brain cannot retain or process information as freely and easily as most people's can. What people with epilepsy also need, is the understanding that one minute they can be completely fine, normal, running around like everyone else and yet then the next minute they can feel completely "weird", have a "tummy ache", "headache", "dizzy", "hot/cold", "nauseous", the list goes on and on.
After trying to research as much as I could about epilepsy, I realized we know very little about this mysterious disease. What was once considered a "brain disease" may actually not be so true anymore. There are many scientific studies proving that epilepsy is not only a brain disease but that there is another pathway that needs to be carefully examined and treated when dealing with patients with epilepsy; that is the gut! Modern medicine has failed epilepsy patients by only treating one aspect of this disease.
Thankfully, we have taken on a more holistic approach when it comes to Bianca. Every day I find myself asking "Why?" when faced with an array of medications and procedures recommended for my child. And although I can appreciate not every parent has the means or knowledge of how to navigate all this information, I have been fortunate enough to be able to seek out help when trying to make these decisions.
MORE NEEDS TO BE DONE!
Unlike some other well-known diseases, funding for epilepsy research is very minimal. There are still so many unknowns. Most patients are offered a basic drug treatment in hopes that it will be the correct drug or dose. But as in Bianca's case, the first drug of choice is not always the best. We are using these patients as guinea pigs, taking guesses as to what the best option would be. When in fact PROPER assessments and a more holistic approach are what is lacking!
WE NEED FUNDING!!
We need to feel SECURE in every recommendation our medical team is giving us! We need to feel supported REGARDLESS of what therapy we chose to take. We need to feel as though every stone has been turned to give each patient with epilepsy the absolute best opportunity for a normal life!
So here I am.
Just a mom.
…with only one thing to give the epilepsy community…
I am giving my VOICE!
I am not an expert when it comes to epilepsy, but I am an expert when it comes to knowing what my child needs!
So, here I am, spreading awareness in hopes that other parents will not have to fight as hard as I am! To ensure each child is given the best support possible!
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.