Yes... only 36 days until summer is gone. BUT if you are like me, summer is determined by how many days we have left until the first day of school (26 days)....and the return of those hectic morning schedules. On the upside the "I'm Bored" whining will stop, so that's a plus!
For many people the hectic days of work and parenting leave us with little time to get the support we sometimes desperately need. Many parents are now looking for support online because the internet is available 24/7 allowing us to reach out to our network of friends at anytime - even in the wee hours of the morning. The little time I find to myself is when I am winding down and getting ready to go to bed. This is when some of us... ahem, like me.... update or read our Facebook friend posts and since we are a technology savvy group the updates or page surfing is done through our gadgets (iPhone, Blackberry, EVO) which are always no further than an arms length away.
Remember how you felt when you first heard that your child had epilepsy, your first reaction was to "Google it" because the word "epilepsy" was a foreign term to you. Imagine if you could have picked up the phone and called someone who already had experience in epilepsy. Another Mom or Dad that could validate your feelings, and perhaps even clear up some of the confusion from reading the tons of online articles. Would that have helped to ease your mind... at least somewhat? What if you are the "seasoned" parent but now that your child is a teen and rebelling against every you ask him/her to do. Who do you reach out to? With information, guidance, and support parents can cope with epilepsy and help their children cope with epilepsy. How do you do this - you don't do it alone.
We have received several requests in the last couple of weeks for parent support. Some requests have been to talk to other parents on the phone, others have been to start up a Facebook group so parents can post their questions or comments. Please remember that You Are Not Alone - We want to provide the needed support, but sometimes we find it hard to reach people face to face if they live in remote, rural communities where the nearest Metro area is more than 100 miles away. Therefore we are revamping our You Are Not Alone (YANA) Parent Networking Group. This unique group of Moms & Dads can provide the kind of support that only another parent of a child with epilepsy can understand. They have lived through many of the same experiences.
We have recently added a Parents of Children with Epilepsy Support "Wall" on Facebook, and in Brownsville a NEW Parent Support Group Meeting will start in August. This bilingual meeting will be facilitated by a parent of a child with epilepsy. But this is not enough. We need parents that are willing to lend their shoulder out to a new Mom struggling with the new changes they are facing, or a Mom not sure what to do with their teenager now that they are old enough to make decisions that are sometimes not the right ones. There are many wonderful Moms and Dads in our Network of friends that can offer this type of peer support.
Ahem.... Here comes the ask.... If you are available to help a fellow Mom or Dad - even if just through email - please contact us. You can email through our Facebook page, or email me at kim@efcst.org. If you would like to facilitate a Parent Support Group Meeting in your area once a month please contact us. We will handle all the logistics.
Living with epilepsy is not easy, but with mutual support and understanding we can all help each other. I hope to hear from you. <3
