This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!
Prior to Colleen’s birth, I knew absolutely nothing about epilepsy. I had a febrile seizure as a child when a fever spiked, so when I found out that she had two seizures when she arrived at the NICU, there was an immediate thought that like my febrile seizure, maybe this was just something that happened in response to something else and surely it wouldn’t be permanent. But when I first got to see her, I couldn’t even touch her without it causing spikes in her brain activity.
20 long days later when she was finally discharged, it was on two seizure medications. We were told by neurologists at the time that this would be something she would likely outgrow. But after every EEG, it was clear there wouldn’t be any slowdown in her abnormal brain activity. Her epilepsy has changed a bit drastically over the years, whether from changing medications or her body changing, I do not know. She had a lot of “silent seizures,” as a baby, so I only knew that she had one if an EEG happened to catch it. And even when it did, Colleen only stopped for a second then seemed to resume her usually activities. Now, I feel that they’re all so different. She has myoclonic jerks, clonic, tonic, absent, and atonic. And this is why awareness is so important. It not only affects her daily activities, but I’m also trying to raise awareness about what to do is someone has a seizure. If Colleen didn’t have epilepsy, I’m not sure to this day if I would know how to help. While realizing that your child may have to struggle with something is heartbreaking as a parent, I’ve read all I can to try to be her biggest advocate.
I couldn’t be more thankful for her school, teachers, therapists who are so understanding and even fighting for her. Colleen hasn’t been doing well since the beginning of the school year, so her teacher made a list of all her regressions and had a meeting to see if we could figure out what was going on and specifically, what they could do to help her. I’ve never had to fight for her IEP, and probably my biggest fear as a parent, how she’d be treated by her peers, disappears when she is picked up from school and all her friends say goodbye to her. We hear all the time from teachers how other kids like to take turns pushing her on a swing, or wanting to wait until she was off the bus to walk with her. But I think this stems from awareness and compassion. It is far easier when you know what is going on, and that there are specific ways you can help a person.
There have certainly been many ups and downs. Leaving her with a sitter while you work and medications being forgotten, or a myclonic jerk that led to almost needing stitches; It’s a very complicated world to try to navigate when you’re trying to make sure your child is safe, but is also thriving. It is so important to try to find ways I can advocate not only for her, but bring awareness for epilepsy as a whole. During her tough times, it was easy to feel lost and not know what to do to help, but also during those times, I’ve found there is a lot more questions being asked. If I can pass on just a little bit of information, then there is one more person who has more knowledge than they did before. Imagine if you were like me and had never known anyone with epilepsy, but you did have knowledge…knowledge is power and I hope that with it, the epilepsy stigma will end, and of course, can only hope and pray for more funding and research.
I am currently working on putting together simple seizure first aid animation and hope to have more things to share soon. Follow my blog, www.timetobuildcastles.com to stay up to date, and be sure to share! Now, I hope you’re able to find something you can do to raise awareness! Go out there and be amazing epilepsy warriors.
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CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.”