It wasn't until approximately a month after Sonya was officially diagnosed with epilepsy that I started to blog about the experience. I created Sonya's Story while sitting at my oldest daughter's dance class while texting my best friend, about two hours after she was diagnosed with CDKL5. At the beginning of this journey the only way I was able to get my thoughts straight was to put them in writing, and honestly, some days, it is still the only way. However, two years into this journey and many lessons later, I have learned there are at least three creative ways to help you live with a child or family member who is diagnosed with epilepsy.
Make jokes. I have found that laughter and making a (morbid) joke here and there (or all the time) are necessary to make it through the day or sometimes the hours. There is a lot of heartache that comes along with having a child who suffers from genetically caused epilepsy and serious discussions and situations can be made (significantly) lighter with a quick joke. I will admit that not everyone appreciates my humor in regards to Sonya, but I have made it through some very dark times because of it.
Find an outlet. Whether it is playing a sport, writing, photography, arts and crafts, or juggling, find something that helps you get through the days. Having to care for a child or family member with epilepsy is extremely taxing on a person. It takes a lot to help manage the care of a person 24/7, ensuring medications are prepared and taken at scheduled times, making sure the environment is safe because there are not always warnings that a seizure is coming, these are only snipets of the responsibilities of a caregiver to a person who has epilepsy. It is vital for the purpose of sanity to ensure that a proper outlet is in place to help make this experience a little easier for you.
Personal story cards. When Sonya was two and a half months old I used a template from the CDKL5 website to create her very first business cards. I handed them out to help raise awareness and to give insight on what exactly CDKL5 is. After the creation of Sonya's Story as a non-profit, I revamped the cards and still continue to hand them out weekly. I find these cards invaluable and use them in a variety of situations.
These are the most common situations I have found myself handing out the cards:
1. When a stranger is staring and it is clear that they are curious but unsure of whether I want to talk about Sonya's differences
2. When a person makes a rude or snide comment, and it is obvious they are unaware of the entire situation
3. When someone asks about Sonya.
4. I admit I have not done the following, but it is on my bucket list. Take one of these cards and place it with a lovely note on the windshielf of a car inproperly AND illegally parked in a handicapped spot or on the yellow lines.
**(I am unsure if this will make a difference to these types of people, however, it will keep me out of jail)
Take advantage of respite. If your child's epilepsy diagnosis is secondary, and he/she qualifies for respite services, I cannot emphasize enough how important it is to take advantage. If you can have a friend or family member trained in providing these services, this will eliminate an additional stress. It is so important to take time to spend with your spouse, other children, and on your own. It is how you can help yourself to be as healthy as possible in order to give your child or family member the best care possible.
There are so many other creative ways to help you live with a child or family member who has epilepsy. I hope you will find some of these (if not all) to be useful to your situation.
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