On many occasions, I have told people about support groups, and I have written about support groups. I promise you, I will continue to speak about how wonderful support groups are. Whether the group meets in person, or they “meet” on social media, finding support for epilepsy is invaluable.
Today, I brought my 21-year-old daughter to Epilepsy Camp. She has had epilepsy since she was nine months old. She has some learning delays, but is quite independent. Because of her epilepsy, she cannot drive, so a huge chunk of that independence she yearns for will never be fulfilled.
Since Bella was ten years old, we have been active in epilepsy support groups. I started going to give to others the knowledge that I had gained, but soon realized how much others could give to me, and more importantly, to Bella, as well.
As much as spending a couple hours in a room with others living with the same struggles you live with can give you peace, nothing is quite like a kid going to camp. When you are always depending on others to do things for you, it seems easy to fall into a “I can’t do anything for myself” phase, and you do less and less. Bella is very capable of doing many things, but she is in a phase (a very long phase) of wanting everything done for her by her family members.
While Bella was growing up, there was not an epilepsy camp close to our home, and I really wish that I had figured out a way to bring her to one, even if it was a couple states away. Last year, we moved to a new state, and there is a camp just two hours from our home. Unfortunately, Bella was too old to be a camper. The great news is, she was able to be a volunteer at the camp. Bella loves children, and used to work in the Sunday school room at our church, so this is a great fit to her.
So, what is so great about Epilepsy Camp? The first great thing is that every person there either has seizures, or has seen someone have seizures. There is no need to be embarrassed, and no reason to be worried that someone will not understand. The second thing is, there are nurses that handle all of the medications for all of the kids! Remembering to take your medicine two (or more) times a day is so redundant, and sometimes you run late, or think you forgot, but you actually took it. Having nurses handle it removes the stress of having to remember. The third benefit of epilepsy camp is that parents/full-time caregivers get an ever so needed break.
The absolute best thing about this camp, though, is all about the people living with epilepsy. Before last year, Bella had never really seen anyone else have a seizure. During a couple events with the support group, others had seizures while Bella was there, but she was either too young, or too preoccupied in a conversation with someone else to realize what was happening. By being at camp, Bella learned more about epilepsy, and about how different it is for each person. Being there without me, her mom that holds all the answers to everything big and small, she was made to be responsible, and to think on her own. She learned how scary it is to be on the other side of a seizure, and she kept her cool, used the radio to call a nurse when it was needed, and best of all, she came home feeling strong and independent, and seemed so much more mature.
I am so thankful for the hard work that is put into this camp. I wish it could happen more than once a year. The sense of meaning to Bella’s life it has provided is extremely important. She has so much love to give, and this is an opportunity for her to be of service to others. She learns from others, and they learn from her. While I know I can be an asset to this camp, I somehow feel better letting her attend, and grow without me there. It is a mere four days long, but the experience and memories will continually be a wonderful impact on her life.