Yesterday marked an important milestone in my older girls life. One year to the day was the first time she ever had a seizure and the day we were told she had Epilepsy. The day still stands out in my mind, I can relive it like it was yesterday. Cass was so excited. For months she was excited because on August 22, 2009 she would be taking her first plane ride with her Grandma to go see her Aunt, Uncle and cousins in Washington. The day had finally come. Grandma was spending the night so they could get up super early to go to the airport. I went to her room around 4 am. I remember her waking up all sweetly and giving her a hug. I told her it was time to get ready and how much I would miss her. She looked straight in my eyes and told me that she would be ok, everything would be ok. I didn't know then but those words would be something I would come to cling to in the next 24 hours. It was a quick morning, she got dressed in a sweat outfit so she would be comfy on the plane, I threw her hair up in a ponytail and she was good to go. Will was up too and we all headed downstairs. My mom was still getting ready in the bathroom around he corner and Will, Cass and I were sitting on the couches in the living room. Cass was sitting with Will and he was telling her to be good and he would miss her. She said he was silly, walked across the room and onto my lap. That's when it happened. I didn't know what was going on at first, her face was looking away from me so I couldn't see her, but I heard this strange noise she was making. I looked her way (still on my lap) and her arms were frozen up near her chest. Since I couldn't see her face I assumed she was joking around being a dinosaur or something. I even told her "Cass what are you doing?.............Cass? Cassidy?!!!!" As I was saying this, her head was slowly turning toward me. And when I say slow, I mean slooooow. As soon as she turned to me, her eyes met mine and I could see her mouth was blue and her eyes half back in her head. "Oh my God, she isn't breathing!!!!!!" As soon those words came out of my mouth Will jumped up and my mom came running. I was standing by then with her in my arms, lifeless but stiff as a board. Then the shaking began, a violent shaking so rough I felt I would drop her and so I put her on the floor. My world at that moment was spinning. My mom was standing over her trying to get her to come to. Foam started to come out of her mouth and by then I was running up the stairs to get to the phone. I came down with 911 on the phone and all I could see was my pale faced unconscious little girl. My mom asking her to wake up......I ran outside. I screamed for help, 911 was not there and I wanted help!!!! Please someone, help my little girl. My neighbors heard my screams and came running. They dashed inside, another neighbor came to see if I was ok. She just held on to me and waited for the paramedics to come. And they took forever!!! I know we live in new housing but they should know their dang streets!!! A police officer was driving by and we flagged him down and he was able to get a hold of the crew and tell them where to go. The operator kept asking me if she was breathing, I just couldn't bring myself to go inside. I knew my mom and Will could handle it, I was a mess and seeing my girl on the floor not moving scared the hell out of me!!! That's when the flashing lights started coming down my street. The paramedics jumped out and went inside. I followed, a little more comforted knowing they could help my sweet girl. She was laying there with her head to the side blankly staring at the couch, not responding to anyone. About 5 minutes after the paramedics got there all of a sudden she looked at my mom. She looked so confused, I wanted to grab her and hold her and tell her how much I loved her, how sorry I was for running and leaving her, to let her know I would never run again. But I couldn't, they needed their space to run tests. They were very sweet to her but you could tell she had no clue what was going on. To her, she was just sitting on my lap ready to go on a trip and the next thing she was on the floor with grandma and the paramedics surrounding her. They said she was stable and that we would be going by ambulance to the hospital. I knew I needed to go with her, I would not be able to drive first of all and not knowing if she was ok would drive me nuts. Will drove behind us and my mom stayed with the younger 2 girls. Before we left I remember asking my mom if she was ok because I was a wreck, she said she would be but I knew she was just as shaken as I was. We made it to the local hospital where they would put in an IV, do a cat scan and run some blood work. All the while calling around to local children's hospitals because after all, it was Saturday at 5 am and no specialists seemed to be working at any hospital that day. Eventually they got confirmation from Children's Hospital of Orange County (CHOC) and withing 2 hours we were being transported again. The people at CHOC were amazing! They made my little one feel good and tried to put me at ease. Will was able to get there within the next hour. We had a nurse come in to perform an EEG, that's where they stick little nodules on your head that connect to a computer and they read your brain activity. I was looking at the screen but of course had no clue what any of it meant. But I knew it was not right. The nurse had this look on her face and kept highlighting certain areas. She kept telling Cass it was ok every time the lines went funny and Cass would curl her toes and get tense. The nurse didn't even finish. She excused herself and came running back in with the neurologist. He looked at the screen, saw the parts she highlighted and told her she could stop the test. He said that he would be back in to see us in just a bit. They took the stuff off her head, which is held on by weird gooey sticky glue. Will and I took our little girl into the bathroom and gently washed her hair and all the yuck away. When we came out our doc was in the room. Cass was put back in bed. The doc said he just wanted to do one more test. He had Cass sit up a little and start breathing heavily as if she had been running. He was doing it too and having her follow him and before I knew it, she was back into a seizure. He seemed pleased to know that happened but I looked away and couldn't help but cry. What was going on?!!!!! She was fine yesterday, she was healthy!!!!! He sat us down and gave us some papers. He told us she had something called Epilepsy. That she would be getting an MRI done to make sure that no damage had been done to her brain and then we would start her on medicine, medicine she would be taking for the rest of her life. He left the room and I told Will I had to leave for a minute. I went down the hallway, into the elevator and lost it. I felt so empty, I felt like the weight of the world was on top of me, I felt like someone had ripped open my chest and took my heart out. I had to go outside and breath. I had to call my mom, call my family. I told them about this thing called Epilepsy, what it was, what it meant, saying the word was so strange to me. But I knew I had to face it. I knew I needed to cry, to scream and ask why......and then I knew I needed to go upstairs and be my little girls rock. To make her laugh and see her smile. So I did. The nurse wasn't too sure if the MRI would be a success that day, the anesthesiologists were gone for the weekend and most kids and even adults needed to be sedated for the MRI because they had a hard time keeping still. We said we would try and if it failed we would come back during the week. Can I just say, my little girl rocked!!!!!!! She laid still the whole time, for 45 minutes she laid there and didn't move a muscle!! The doc told us everything looked fine but would have the other doc read it and let us know for sure before we left the hospital. All of the nurses were so proud of Cass, they all came in with gifts and hugs. Did I mention how amazing the people at CHOC are? That night was rough. Cass slept the whole night but I think I only got 30 minutes. I kept waking up to check on her, scared something would happen once I closed my eyes. So I opted to stay awake. I sat and watched her, I cried, I prayed to God for her to be ok. The papers they give you to read have some awful stuff on them, I know they need to give you all the scenarios but it is a scary thing to read! And the video they had us watch wasn't much better. We left the hospital the next day, with her new meds in hand and a sweet smiling little girl. She was pretty tired for the next 3 weeks, just wanting to lay on the couch but week by week she was stronger. We are now on her third medication. The first 2 didn't work and she would have small seizures. She is doing fantastic these days!! Her last EEG was her best one to date and she is a champ at them. She still has some problems and I know that even though things are great now, that they may not be in the future, but I stronger and know that whatever happens, we will get through it.
Whenever I read stories of tragedy and triumph or kids who are sick, I always want to know how I can help. There are many ways to help Cass and other kids (and adults) just like her who are living with Epilepsy. You can donate money to causes that help find a cure. We love the
Epilepsy Foundation, they are a nationwide organization but they also had different local branches. You can also participate in activities that raise awareness and money to help find a cure. On October 17 we will be walking for a cure in the
Epilepsy Freedom Walk, if you would like to walk with us as part of team Cassidy, let me know, we would love to have as many people as possible!!!!! And if you cannot donate money or time, please take a moment and be informed. There are many amazing sites that give great information. Helping someone while they have a seizure is easier than you think. Here are just a few things:
1. Never try to stop a person from having a seizure, holding them down can hurt them more.
2. Never stick anything in the persons mouth. They cannot swallow their tongue!!!!!
3. If at all possible, try to turn the person on their side if you see they might be choking, by doing this any saliva or blood from biting their tongue will come out of their mouth instead of down their throat.
4. Try to clear the area around the person, hard or sharp objects could pose a major risk.
Thank you for reading. I know this is a huge post and many who read it wont think twice. But if this has touched you in any way, please do what you feel you can. I am hoping that one day we will find a cure, that no one will have to have any more moments of their life lost to a seizure.
I will leave you with some pictures. I have contemplated on whether to post her picture of her first EEG. I feel like it would put an image in your mind that would hopefully light a fire but at the same time, it saddens me. I can see the fear on her face and for that very fact I don't feel comfortable posting it.
This was taken the day after, we were still in the hospital and had gone down to their play room. she was making a picture to bring home to Grandma.
This was earlier this year at a Purple Day Celebration, put on by a wonderful neurologist in this area. she was able to meet other kids who have Epilepsy just like her!!!!
