Danielle Duce: My Son’s First Seizure - The Day My Whole World Changed.
Danielle Duce and husband Steve live in Jacksonville with their son Joshua, age 8. November is Epilepsy Awareness month. To find out more, or for questions about Epilepsy, please visit the Epilepsy Foundation of Florida online at www.epilepsyfla.org.
By Danielle Duce
On a beautiful Jacksonville day, I was enjoying the company of close friends at a baby shower when I got the call, "Danielle, get down to the Children’s Hospital. Joshua has had a seizure!” My perfectly healthy little 2-year-old son now faced the toughest battle of his life. When the doctors said, “Joshua has a neurological condition called epilepsy, also known as seizure disorder,” my life was radically changed.
I didn’t even really know what epilepsy was. One day I do not even know how to spell epilepsy, and the next day it becomes my life.
I became an “expert” quickly. On our more challenging days, Joshua would have 50-60 seizures a day. Life as we once knew it ceased. Among the first things I learned about epilepsy was how many different types of seizures one can have. Joshua, being the go-getter he is, would experience just about all of them! Because Joshua experienced many types of seizures, and at all hours of the day, he needed around-the-clock undivided attention.
The poor little guy could not do anything on his own. Something as simple as trying to take a drink from his sippy cup or feeding himself became a challenge. When a seizure hit, he would drop whatever he had in his hand, hit his head or face on the table, and even sometimes fall out of his chair onto the floor – all very suddenly. Joshua could have been the poster child for paper towels. I can’t begin to tell you how many clean-ups we have had because of the seizures. He also could have been the poster child for bandages due to all his bumps, bruises and cuts.
A walk outside, a tricycle ride, bath time – things once harmless – became matters of great concern. To protect Joshua, we adapted our home and our lives.
Our family was trying to make the best of each day, but I was so concerned about my son’s future. I was constantly afraid of when and where the next seizure would occur. I was angry because I didn’t know why my son had to experience seizures. Most of all, my heart broke because, as a parent, you never want to see your child endure this.
The month and years to come were filled with EEGs, MRIs, CTs and all sorts of medical testing. Our family visited specialists around the country trying to figure out what was going on with Joshua and how we could help him. Joshua was later diagnosed with Idiopathic Epilepsy. While other types of epilepsy may be caused by brain tumors, strokes or other neurological disorders, Idiopathic Epilepsy is a neurological disorder with no other identifiable cause. As our neurologist tried to explain in laymen’s terms what “Idiopathic” really meant, he said in a light-hearted manner, “That just means Us Idiots (the neurologists) can’t do the pathology; we do not know why your son is having seizures.” The lesson to be learned here? Sometimes to get through tough times you have to make light of the situation.
Some days I felt as though we were the only family in town with a child experiencing seizures. We were doing the best we could, but we wanted so badly to meet another family also facing epilepsy. I wanted to learn from other parents how to live with and manage life with epilepsy. I wanted Joshua to meet other kids who had seizures, too. I wanted to know that we were not alone.
I am thankful doctors protect the privacy of their patients. That also means our doctor could not just say, “Here is the phone number of the Smith family; they have a child with epilepsy. You can call and chat with them.” What our doctors did say was, “I recommend that you contact the Epilepsy Foundation of Florida.”
I am so glad we took our doctor’s advice. The Epilepsy Foundation of Florida offers services and programs for people (and their families) whose lives have been touched by epilepsy and seizures.
To this day, Joshua, age 8, has seizures – though fewer than before – and faces such challenges as poor short-term memory, slower processing, serious impairments with his expressive language and fine motor skills. But there have been so many good things and so many important lessons that might not have been learned if it were not for our lives being touched by epilepsy and seizures.
For years I asked God, “Why? Why is Joshua having so many seizures? Why do we have to go through this?” But God has taught me not to ask why, but to ask what? “What do you want me to do with this?” Adversity may never be a blessing, but God, in His Grace, can bring blessing from adversity. Through the countless doctor visits, hospital stays, medical treatments and therapies, my family and my faith have been my strength and encouragement.
In any special need or situation, our challenges can refines us and make us better, stronger people. In turn, we become better equipped to lift up and support others around us. God has taken my mountain of epilepsy and seizures and turned it into a pathway to serve others with special needs.