BENEFITING: Epilepsy Foundation of Metropolitan New York
Having a child as we all know doesn’t come with a handbook. Our beautiful daughter, Ava Grace was born 32 weeks early weighing in just about 4 lbs. Healthy, for the most part, but failure to thrive. The next year or two was endless doctors for everything from nutrition to services for milestones. She eventually caught up as the say and was a happy, confident, outgoing little girl. Besides the usual tonsils and adenoids we went on raising our daughter as what we knew as “normal”. Our bumpy road was starting to even out and we were getting a break from doctors and specialist. On a beautiful sunny day in July is when the bumpy road became rocky again. Our little sassy Ava decided she wasn’t going to listen to daddy, as most children. She did not wear her helmet as she rode her skate board, lost control and fell smack in the middle of the forehead. I received the call from my husband as I was at the store preparing to leave in 2 days for a business trip away. “You need to come home I think we need to take Ava for stitches.” Frantic mother I rushed out of the store and went home. The cut was deep, gushing blood and would definitely need some sewing up! Routine ER visit. Cleaned her up, stitched her, vanilla milk shake and we were on our way home. Next day I needed to go to work to gather some last things for the trip so I decided Ava could come along for the ride. As always she wanted a ponytail. I was gently brushing her hair into a pony when her body weight started to fall on me to the point I almost lost balance. That’s when I realized she was “passing out”. I held her head and watch as she laid there twitching to one side, eyes rolling to the back of her head. The vision will be imprinted forever. It was the scariest day of my life. You learn just how long 30 seconds really is when you are watching someone you love having a seizure. Seemed like forever. Her body went limp as if she was sleeping and then she opened her eyes crying, “What happened to me?” I was calm, and I think it was the adrenaline, but I was able to get her up. She started vomiting. I thought she has a concussion from the skate board fall. I called the pediatrician who then said call an ambulance ASAP. They were on their way. Called my aunt she was the closest by. I was alone, my husband was at least an hour away and I also had my 3 year old. There was no way I’d be able to drive to the hospital and take care of Ava at the same time. A cop showed up first asking a million questions. I felt like I was under a microscope. Then my aunt got there. Where’s the ambulance? Ava was not right, confused, dazed, and the vomiting wasn’t stopping. We decided to drive to the hospital. They took her immediately in the ER. Tests, blood work, more tests and then about 4 doctors walked in. It was the pediatric neurology team. The questions were intense. Things I wrote off as “normal” childhood nothings were something’s. We were admitted for an overnight stay and the next morning we were again greeted with the news that would change our daughter and our lives: Generalized Seizure Disorder. She had suffered from Grand Mal Seizures. The skate board accident didn’t cause her epilepsy, but it onset the disorder. She was immediately put on a “cocktail” of medication to “get it right” and under control. She went from a spunky, confident, NO fear child to a child who lives in fear. We did the best we could to assure her to live her life like she has before, but in all honesty, I scared that I could not be there to protect her at all times. That is why I decided to get educated and get involved. The medication truly helps save our children, but there are sacrifices that come with it like any medication, side effects. We lost our daughter into a deep dark hole. The more I learned through the web sites, support groups, and by participating in the walk and talking with other mothers the more I realized I wasn’t alone. We finally were able to find a med that was good for her through my persistence, than the one she was on. The whole process of feeling “I am not “normal” took its toll on our daughter. She hates herself for having epilepsy. She sees a therapist now and we see glimpses of our Ava, as we knew her, coming alive again. There is NO cure, but I will NOT allow this to take over her life. This will be a part of her life for a while, if not forever. We need to reduce the stigma. That is why we decided to get involved with the EFMNY. It’s hard to raise empowered and confident little girls. We, her parents and all her supporters will continue to raise awareness to show Ava that no matter what life throws at you, you pick yourself up and overcome the obstacle. There is no such thing as normal.