In honor of Epilepsy Awareness Month, we would like to share this story written by a mother, whose son was diagnosed with Epilepsy in 2007.
Today is the second day of November, and for most people that may not mean much, unless it is their birthday or anniversary. That is different for me, my husband, my children, and our friends and family. November is a special month for us; it is Epilepsy Awareness Month!! We fight Epilepsy daily in our house, but this month is dedicated to raising awareness, erasing the stigma, and helping my oldest son to lead a normal and productive life.
On May 31, 2007 my husband and I welcomed our first born into this world, and there were never two more proud parents than us! On December 8, 2007 our son was admitted to Arnold Palmer Hospital for Children and underwent 5 days of extensive testing. On Wednesday December 12, 2007 our lives and his changed forever- Steven was diagnosed with Epilepsy! We were MAD, SAD, SCARED and ALONE for the first time ever. We did not know anyone else with this diagnosis, did not understand what it meant, and there we sat in a hospital room, looking at our baby in his crib wondering what his life would be like.
For the next year, we were in denial, thinking everything would change- he would outgrow it and be fine. We didn’t tell a lot of people and didn’t read much about it, because we figured if we ignored it, it would go away. Not our little family; this would not be us.
In June of 2009, we received some critical news. Steven’s brain had taken a turn for the worse, and he only had a 2% chance of ever outgrowing his seizures. We saw an increase in seizure activity, and we went on a massive medication overhaul where he was on over 12 different medications in the span of six months. Some he was allergic to, some made it worse, some had side effects we could not accept, and then some started to work.
Steven was in and out of the doctor’s office and hospitals. He underwent brain scans, blood-work, and other procedures every month. It was HORRIBLE for him!! At this point, we were not even sure who our son was anymore. He was so medicated, zombie-like, and he had no personality, or at least he wasn’t the same happy baby that we remembered at age 6 months before all this happened. We just wanted our son back.
Then, Steven started to fall behind. We knew he had delays and they were getting more evident each day. We went to one “expert” who said, “oh he is fine,” but I did not agree. I KNEW something was wrong. Eventually, Steven was diagnosed with developmental delay in language, fine motor, and gross motor skills. I was once again MAD and SAD, but this time not alone. I had a VOICE that was going to make people listen and I fought and fought for Steven until we got him some help.
In June of 2012, we went for a second opinion and Steven once again went in the hospital for testing. His new doctor had a different approach and I am happy to say that since July 7th, 2012, Steven has not had a seizure. That is almost 4 months- the longest ever!!!
What’s even better than that, we have our REAL Steven…he has a personality, talks to us, tells us jokes, participates in school, likes to learn, and can now do simple tasks like getting dressed and writing his name. At one point in time, these were things we weren’t sure he would ever be able to do.
We know that one day his seizures will likely start to come back…but we are prepared. We have our VOICES in ourselves, our friends, our families and the Epilepsy Association of Central Florida who FIGHT for Steven and those like him EVERY DAY, but especially today and the month of November!!
Please help us get our word out. Epilepsy is here; it is not going anywhere, and it can happen at any time, to anyone, any age, color, gender, religion, Democrat or Republican. Stand together with us and fight…we only have our VOICES. Please be one of the voices that isn’t afraid to help us erase the stigma!!
Here’s to hoping everyone has a seizure-free day and month…even year!!
I wear purple for my son. Who do you wear purple for??
-An Epilepsy Fighting Momma!!
For more information on our Level 4 Epilepsy Center, visit the Center for Epilepsy.