On a sunny relaxing Sunday afternoon, I noticed my kindergarten making strange noises – I couldn’t tell if she was grunting or laughing. We had no idea what was happening to her. For just a moment, I thought she was playing a trick on me! Before I knew it, we were in an ambulance headed to our local children’s hospital. So many nurses, so many codes called, my husband me and her twin sister rushed out of the room into the waiting room as they had to bring my daughter back to life. I fought to stay and was forced to sit in the waiting room and let the doctors work as I was helpless to do anything but hold my other daughter and my husband. What felt like days was only few minutes the doctor comes out and tells us she is doing good and, luckily in stable condition. Our fight has just begun.

Let me hold my baby girl. Let me set her free. Endless nights and silent prayers so many questions and so many questionable looks. My husband and I book cling to each other in fear but smile and grin to hold each other strong as we tell our daughter to be strong cuss she can make it. She is bright she is amazing she is the shining star. Her sister identical twin kept asking us “why her and not me?” such a hard answer to give. These emotions are such a roller coaster for all four of us. we cant imagine the pain she feels and she cant imagine what we feel. I cant stop my baby girl from silently staring into space, I cant stop any of the seizures she has. My husband and I take turns as its hospital and doctor trips is our life. Be free of this thing that clings to my daughters life like a leach. Yes, a month has gone by we celebrate so exited a glimpse of hope after years gone by and then all sudden another day and, another round when will this just stop? When will a CURE be found? When will we get answers of whats wrong with our child. So many doctors we have seen now, tired of others advice. Walking into Texas Children’s Hospital I felt like there was hope that day more than most. In February 2011, my daughter was diagnosed with epilepsy. An answer finally was given and a breath we all were able to take. Unbeknownst to us, our sweet girl was suffering from constant partial complex seizures. We soon noticed her case was proving to be a bit more complex than anticipated, so we started researching the top epilepsy hospitals in the nation after a year of local care. We were willing to travel anywhere and we found out we were just were we needed to be.

We tried numerous cocktails of anti-seizure medications. I can easily recall relishing in the brief moments of joy when the medications seemed to be finally working, only to be disappointed by the return of those nasty, inevitable seizures. By this time, my daughter had moved into our bedroom so we could monitor her activity through the night, every night, recording the time and length of each seizure. As a mother, watching your child seize makes you feel completely helpless. I would witness up to 20 seizures on the most unfortunate nights. She would cry herself to sleep or cry in her sleep. Shed be talking and fall into another seizure and not much I can do but make sure she doesn’t hurt herself. I cant take away the seizures but I can hold her close and make sure she knows shes loved.

After realizing medication wasn’t the answer, I distinctly remember the first time epileptologist discussed surgery. I must admit, I cried throughout the entire conversation, because the mere thought of brain surgery as an alternative scared me to death. How could I possibly make this decision for my child? How could removing a part of my precious child’s brain not leave her with a lifetime of disabilities? What if something goes terribly wrong? How am I going to explain everything to her sister? How am I going to keep my husband calm let alone myself?

SURGERY

Nearly 130 electrodes were placed directly on her frontal lobe to identify the exact point of seizure origination. Once this procedure was completed, my daughter fortunately seized quickly. They were able to confirm her seizure activity was indeed coming from her right frontal lobe. We handed her off to the doctor again two days later so his team could meticulously remove her right frontal lobe, including her secondary motor strip. Then, we waited. My husband and I found a nice, quiet place to settle down for this long day of surgery. We prayed. We reminisced on stories of our girl’s silliness. We remained optimistically hopeful that she would return to her love of cartwheels, tumbling, singing and playing with friends. The epileptologist and his team did a great job of updating us on her surgery progress. We couldn’t have been happier to put our eyes on our girl in recovery. She opened those big, blue eyes and said, “Mommy and daddy.” Tears from all of our faces as my daughters, my husband and I embraced.

Fast forward to today – my princess is now 16 years old, a teenager! On June 19, 2019, our even spunkier daughter joyously celebrated five years of freedom from seizures. She has also been off seizure medication for over three years! Not only is she back to cartwheels and tumbling she’s on her high school’s competitive cheerleading team, hanging out with her friends like a normal teenager and tackling ninth grade. While the road to full recovery wasn’t exactly seamless, gone are the anxious nights of careful monitoring. We are extremely grateful to have our family together and a great care team. She may be seizure free for almost 5 years but we still check in with the doctor to make sure that everything still is medically going well, as we can not control our body and nobody can predict the body and future.

MORE INFORMATION ON TYPES OF SEIZURES

Most epilepsy is treated with medication. Drugs do not cure epilepsy, but they can often control seizures very well. About 80% of people with epilepsy today have their seizures controlled by medication at least some of the time. … There are more drugs available today to control seizures than ever before! That doesn’t mean they Cure epilepsy. Please help us find a cure. Even if that means to hear our story’s that is supporting. There is also a way to donate to help those who need treatments, medications, and life saving surgery’s like the one in the story above that was so kindly shared. https://donate.epilepsy.com/donate

Please if you have a story contact me. If you like this comment and like this post and take a look at the rest of my post thank you. Real life story’s, shared with me to be shared with everyone we support each other.