Many years ago, I created a Facebook account. I was really excited at how ‘connected’ I could be with people, even if I barely knew them. I added a few ‘friends’ and then, it became an addiction. Before long, it was out of control. I had hundreds of ‘friends’. Really? No, not really, but according to Facebook I did. Then, naturally, it just didn’t seem important for me to care about Facebook – at all. If I wasn’t planning to call the person and talk to them, I really didn’t care that they were going to be ‘watching tv with my wifey tonight!’ or ‘…headed out to dinner with my hubby! yay!!!” Really? (for those of you that do this, I am sorry if I offended you – keep reading.) I made an attempt to ‘un-friend’ a lot of people I barely knew to reduce the content I was being bombarded with, but the result wasn’t what I wanted so I gave up on Facebook. It did come in handy around Christmas when I was looking for snail mail addresses for the obligatory annual card sending ritual.
December 19, 2011 changed all that for me. Our daughter was diagnosed with a rare and severe form of epilepsy, and her prognosis was not good. It began with an ER visit, where I frantically used my ‘smartphone’ to try to send out an email to all of our extended family. I sent an email to about 50 people to say an extra prayer for our daughter and attempt to explain the situation. At least half of the emails bounced back since I didn’t have current contact information. And then there was another 25 people who I thought would want to know, but didn’t have email information in my phone. Uhg!
Like anything worth doing, some pain is necessary to be very successful.
I attempted to use email to send a mass email every other day or so updating everyone on Savanna’s situation. It just got so difficult to keep up with incorrect addresses, who didn’t get the email but should have, etc., etc. I turned back to Facebook in an attempt to seek help with my communication dilemma. But, at least half the people I was emailing didn’t have a Facebook presence. (What? How can that be?) Yes, for those of you who live on Facebook (and you know who you are), it is possible go through this world without Facebook and not feel left out or incomplete. In the end, ‘blogging’ was the way to go for my story about Savanna’s Journey. The sites with the nifty email subscription service are useful for my audience. WordPress has been wonderful for me. It has enabled me to do something I find therapeutic while also keeping loved ones and friends updated with the latest information. Writing has always helped me find clarity in life’s moments otherwise blurred with information overload. The ability to automatically post to my Facebook account has been reassuring that the intended followers are reached one way or another.
Anyway, a neighborhood friend connected us with a family who have a son diagnosed with IS. They introduced me to a some Facebook support groups for parents with children diagnosed with IS. This lead to more ‘secret’ groups for parents with children with brain surgery. I had no idea this community was out there and organized in this fashion. I got plugged back in to Facebook and have become very interested in a few of these groups. This has led me to more stories about families like ours who have a child like Savanna. The newly found connections through Facebook have been a good source of soul food as we navigate the waters of this catastrophic pediatric epilepsy.
As I read more new posts and comments in these groups, I think back about conversations I have had with the most hardened Facebook fans over the years. They can’t understand why I am not using Facebook to manage my entire life, and I can’t make them understand why I believe Facebook isn’t the right application for me. I know the door of criticism that I am opening by walking back some thoughts expressed in a rather explicit manner in the past. Have at it with comments, which I don’t moderate. But, in all seriousness, my life was completely different at that time. And tonight, having finally found good practical uses for Facebook, I am rethinking a few things…and maybe Facebook isn’t so bad for me. (There I said it!)
Hi, was interested in what you wrote about facebook..I started my blog on WordPress for similar reasons. Facebook is not my preferred application. I don’t enjoy the spamming and way too much information from some ‘friends’, including my teenage sons (some things I simply don’t need to know) . However I do agree that it has its uses – it is what my family overseas uses, and for that alone it is great – not fun, but useful.
I also have a little (very little) experience with epilepsy. My son had a number of grand mals when he was young. Wishing you and Savanna all the best.
Every now and then I make another attempt at facebook. I see its usefulness for many things, I think you need to be a facebook addict to enjoy facebook. I’m not and I don’t. Maybe when I have more time.
I find now I have to be careful with the FB support groups. It is so easy to get caught up in someone’s post about initial diagnosis and what to do and expect.
See you in a week!
I have been really caught up with what is going on here, and haven’t had the time to explore all the new blogs I have discovered. I really enjoy yours! When Savanna is undergoing her surgery, about 10 hours, yours is on the list to read the archives… Even very little experience with the enemy, gives you a different perspective than most. Does your son currently take any maintenance medication, or did he outgrow the activity?
He was on tegretol until 14 years of age. He seems to have outgrown it – no other incidents for about 4 years. However, it is always in the back of my mind. Could it start up again? and God please, not when he is driving or swimming!
I was just reading one of your other posts, where your wife wonders if the decisions to go ahead with surgery is selfish or arrogant. She must know that you are both the furthest thing from that. If anything you are brave and compassionate parents.
Ps – I will also be keeping an eye on your blog in April – Savanna will be on my mind.
Prayers from Australia.