A Mom's Story: Roxanne Roth
Life can change so quickly, in the most unexpected ways and when you are least expecting it. I found out just how quickly that can happen just a few days before Aurora’s 10th birthday. We were all at our summer cabin one afternoon, when I heard a loud thump. When I came out to see what the noise was, I found a kitchen chair knocked over and Aurora was laying curled up on the floor. I recall thinking she was just playing a trick on me, so I told her to get up off the floor. When she didn’t move, I bent down, brushed her hair back from her face and saw that she was drooling and she was staring vacantly at me, as if she was not conscious or aware of me. I called to her, asking her to speak to me, but she didn’t reply or respond. My heart sunk. Fear and panic hit me. Trying to stay calm, I called for my husband to come. When he arrived running into the cabin, Aurora was still on the floor, unresponsive. He tried speaking to her, she tried talking, but her speech was incoherent. He quickly called 911. It wasn’t long (although it felt like forever) before our kitchen was filled with First Responders, EMT and the STARS Helicopter Medical Team.
The rest of that life changing day was spent at the ER. Our incredible health professionals, doctors, nurses and technicians, examined & monitored Aurora, conducted tests and worked to figure out what had happened to Aurora. It was a long and exhausting day. Aurora doesn’t remember many of the events of this day. However, I will never forget it. I will never forget finding her crumpled and incoherent on the kitchen floor. I will never forget the fear in her eyes when she finally sat up after slowly regaining her coherence and she saw all the medical personnel surrounding her in our kitchen. I will never forget the fear and panic I felt. I will never forget how helpless I felt at that moment.
Our lives have all changed since that first seizure. The worrying never seems to stop. I haven’t slept through an entire night without waking at the slightest sound wondering if Aurora is having a seizure in her sleep. There have been many changes in medications, trying to find the perfect combination and dosage and every change was accompanied with mood and behavior issues, tiredness and forgetfulness. The worse was the hair loss. There were many tears shed over the significant amount of Aurora’s hair loss.
Over the past 3 1/2 years epilepsy has continued to affect every member of our family. For Aurora, it seems like we are always nagging her to take her meds and this often turns into an argument. For my husband and me epilepsy comes up in every conversation. We are always worried about her safety. For her brother, Noah, there are many times his needs had to wait. I have tried to be just as attentive to his needs as Aurora’s but finding that balance hasn’t always been easy.
Our family now has a new normal that is sprinkled with medications, doctor’s appointments and EEGs. It is my hope that one day Aurora’s seizures stop, and we again will find a new normal, one without epilepsy.
This summer I will walk across northern Spain with Aurora to raise funds for epilepsy research. I will walk for every parent who has a child suffering from epilepsy and I will walk to support my daughter. To show her there is so much more to life than epilepsy and to encourage her to continue being courageous and to continue putting one foot in front of the other.