Children & Youth with Epilepsy
Amelia
I don't think I could ever forget that night. It's embedded in my brain, like the night she was born. The night she was born, however, was joy, excitement, and a good kind of nervousness. She was here, she was perfect, and she was healthy.
However, the early morning of Dec 26, 2017, at 3 am, is the dark still of night we could never forget. We had an amazing Christmas as a family; the kind loaded with memories and laughter and, of course, good treats—you know, all the right stimulants that set off this unknown electric shock wave that changed our lives. That changed HER life.
Amelia woke to use the washroom and then came to sleep beside me for the remainder of the night. Not something Amelia typically did that often anymore. That night she made a loud grunting noise and I said to her, "It's okay, Amelia, it's just a dream," thinking my girl was having a nightmare (but now knowing it was the beginning of a seizure). She took the longest gasp (and I had only heard a gasp like that one time in my life while working at an old age home) and it shot me up like a rocket, as I yelled for my husband to turn on the light. Our daughter was completely stiff, foaming in her mouth, eyes back, shaking and her face, her sweet face, distorted in anguish. I had never seen anyone have a seizure before, but as I looked and called her name, while my husband cried and screamed, "Please God, no!" something much greater than myself gave me the knowledge that this was what was happening. I turned her onto her side and called 911 immediately. At that point, her face was blue and all I could think was Please God, don't take my daughter from me, from us. The 911 operator dispatched a paramedic crew and the local fire department to us and they arrived quite quickly for us living in a small (and I mean very small) town. Just as they arrived, the seizure started to stop, but Amelia was trapped, unable to speak to us or tell us her name. Was this going to get better? How come she can't tell us her name? Why is she sleeping? Why can't she move her muscles? What the heck is going on with our child? I wanted to take every ounce of her anguish and carry it for her, I wanted to take this away from her the second she made that gasping noise. But I couldn't, and that is the hardest part of being a parent. We cannot take away our child's pains or their sufferings.
Time passed and we were pushed aside with a febrile seizure diagnosis that I knew was wrong. Amelia was 7 at this time, she wasn't sick, she didn't have a fever, and she had never had a seizure before (in infancy to my knowledge or any other time). Amelia describes this time in her life as, "Upsetting and so tiring all the running back and forth to hospitals it was so scary to me" and "Pink dots, Mommy, I can see pink dots and lines on the walls." This was it for me. I drove her down south and we finally got some good care. Amelia was sent a referral to Sick Kids and only weeks later, after EEG testing, we got her diagnosis. The one I figured we would get. The one I prepared to get, but was absolutely not prepared for.
"Would you like Amelia to stay in the room while we talk or have a nurse take her outside?" Here it is, I thought, the test was abnormal and now we were going to hear about it. "No," I replied, "It's Amelia's body and I think she needs to be here also." Amelia says, when remembering that moment, "It made me so upset; I was so sad for myself and my parents."
"Amelia has epilepsy," the neurologist spoke. I cried, Andrew cried, Amelia cried. All the thoughts running through my head: But she was healthy, was this my fault? "Did I grow her wrong?" I asked.
That appointment was painful. It gutted us as parents. Amelia wondered how her life would change. As we had moments to process, she went into the details of scans, types of epilepsy and precautions and at the same time, our sweet Amelia was looking at her feet, feeling this: "I cannot have a bath alone anymore, swimming rules that never applied before; I was so upset and scared." We talked medication and wondered how medication, meant to help, could also be so scary? We talked about all the possible side effects, rashes, personality changes, exhaustion, and more. Thankfully, Amelia has had zero side effects from her medication, but at the time that was so scary for Amelia and for us. We finished the appointment and over time she had tests and they were all good results: no lesions or tumours. We adapted to life with hiccups and seizures along the way. Amelia struggled with her memory at one point after having a few seizures and needing med adjustments. I was determined for Amelia to have the most normal childhood as possible.
"Epilepsy is something you have, sweetie, but it's not who you are," I tell her. Amelia is funny, smart, beautiful, artsy, an amazing swimmer, my favourite dancer, and she just happens to have epilepsy too.
Here are some of Amelia's words:
"Epilepsy is not fun to have. It is hard. You're not able to do some things the same ever again, like have baths alone or swim off the dock without mom and dad RIGHT beside you. Wearing a PFD when you don't need it for swimming, but because you might stop swimming. Sometimes I struggle with my memory, but not too bad. I want epilepsy to go away. I don't think about it every day. I think a lot about playing with my friends and building Lego. Seizures make me feel really sick; I sometimes feel like I'm going to throw up, it's a feeling I get and I yell for my mom or dad. I know epilepsy is not fun. I don't like running back and forth from Sick Kids. The tests make me feel sick because I am so sleepy for them. I felt bad for my brother when he saw me have a seizure on my chair. I get scared it will happen in front of my friends. Peeing yourself during a seizure is upsetting. I have been seizure-free for a year now and that makes me happy. I remember to take my pills every day and night. Epilepsy doesn't stop me from being happy or doing most things like everyone else. I am still able to swing on swings, play with my dog, play with my friends, jump on the trampoline, and play with my brothers. I am still able to do many things I find make me happy. I can dance and that's my favourite thing to do. I also love to draw pictures. If you don't have epilepsy, please learn how to keep someone who does safe. My family keeps me safe and my friends know how to keep me safe too."
I am so thankful for our daughter and we hold hope that this may go away for her someday. Amelia often describes epilepsy as a rain cloud and we can't predict the weather. Having a good sleep and diet regime helps, avoiding triggers helps, taking meds helps, but sometimes the rain comes anyway and we ride out the storm. But often comes the rainbow and, as she says, "I have so many reasons to smile."
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