This space has been pretty dead for a lot of reasons, the main one being that we are just in the middle of surviving. It is hard work. Don't feel neglected though, you're not the only one! I've been neglecting my hair, my church callings, friends, Fall baking (and we all know how important that is to me) and a host of other stuff....it's a group thing! ;)
I decided to clear the cobwebs and dust the old blog off though for something important. It might take me three hours to write this post, since Cole is in his cycle and I can only write when he is resting in between seizures, but here it goes.
It can really bother me when I have people come up and tell me how glad they are that Cole is doing so great. Huh? What are you talking about? Sometimes I just nod my head and say, "Yeah, it is great". No one really wants to know that we have been to hell and back multiple times this year. It's possibly my worst year ever; but, kind of like the tech who did my MRI yesterday said, "But you look like the picture of health!" Yet here I am for yet another test! ;) We need to work on our sick face, I guess.
It is obvious that these particular people only get their information from the snippets of this and that on Facebook. Just because we haven't been in the hospital, doesn't mean things are going great. It is because the hospital told us that they really can't help Cole any more. That is our reality. We just have our mobile Emergency Room here at the house with our team and equipment spread everywhere. We batten down the hatches and hunker down whenever the bad days hit. We have been occasionally having really good days, and we celebrate that, but the bad days would make even seasoned veterans shake in their boots. Even we like talking about the good days more than the bad ones. Not a lot of people can relate to having to watch their child shake and turn blue multiple times, among other things. I'm glad for them, but it makes conversation difficult for some when they can't immediately find something in common. It's uncomfortable. So they just get what they can from those bits of social media and call it good. Hey, we like to talk about the weather too!
Turns out, taking pictures of seizing children is really hard, who knew?
Now I love social media, especially Instagram. It lets me see pictures of my nieces and nephews or friends that we live so far from, that is seems like a world away. It is a way that my grandparents can see pictures of Cole, even though they have not seen him in person in 4 years. It is also just a way for some people to stalk others and believe that they have the whole truth and nothing but the truth. No matter how many "keeping it real" posts you do, no picture or status can explain everything about someone inside and out. Nothing can compete with a sincere, genuine interest in someones life and that's what real friends are for, not just online acquaintances. There is a place for both, but just because you follow someone on social media does not mean that you really know them. I have actually had someone tell me to my face that, "The entire universe knows when Cole has a seizure. It is all over the Internet!" Wow. Just. Wow. I was so shocked that I even came home and went through all of my posts of any kind. I was questioning myself and wondered if it was really TMI as this person had been describing. Not even 1/16th of anything that really happens to Cole makes it to "The Internet". I didn't mention it once, during 346 convulsive seizures last month. We consciously choose happiness, and choose to focus on the good. Sometimes that is hard work, but we function better that way. Being depressed can also be hard work. Just because you don't see graphic posts doesn't mean that it is sunshine and rainbows around here. I don't mean to be a downer, but this person obviously didn't choose to get to know us intimately and did not understand our day to day life. That's okay! Just don't make assumptions. I don't assume that you are self absorbed if you post a picture of yourself, or if there are more than two posts in a day. Or if everything looks perfect, then you must be deluding yourself that you are perfect. Or if you go and have fun without me that we are no longer friends in real life. Who makes up these secret rules anyway? Maybe that is why I have really backed off on most social media. It is a platform to automatically judge something or someone, with a picture or a sentence, and I don't like that. I'm going to keep my feed full of things that are important to me, because it is MY feed! You should do the same. I'm not going to stop being on Facebook, because that is where I connect with other Dravet and 4 Paws for Ability parents. I get good information there, amongst the garbage. I am just not sure when being real friends was replaced with pushing a like button.
No one wants to come up to me and automatically be my friend if they saw a picture of me floating around where I was covered in drool, holding a child that looked like he had been beaten up. Most likely they would want to stay away, or call authorities. I get that. It's a side that I don't particularly like either, but it is real. Most would prefer this. Don't we look cute?
Take yesterday for instance. Cole fell forward and hit his head on the wall as he started to have a seizure, even though I was right there and caught him. I just happened to catch the bottom half as he went down. Those red marks on his noggin are not blood, this time. That's not just casual conversation that you can bring up anywhere. It would make the majority of people feel unsettled if I came up and started describing the details of our day to day life. So how much is too much information? Where is the line between advocacy and emotional vomit? I have seen some other parents just share too much, even for me-who tends to be an over sharer, according to some.
Now, why all the hype? November is Epilepsy Awareness Month. Did you know that? Are there people in your feed that are bringing awareness? Or is it just too much information? How many people talked about Breast Cancer in October? Wore pink? Even professional sports teams, talk shows, the radio, bakeries, etc. participated-the promotion was every where. Look, I am all for boobs...I have them, even if they are slight; and I have nothing against Breast Cancer. In fact, I have someone that I care about who is fighting it right now. It is a horrible, horrible thing to go through. I just want to bring light to the fact that it is somehow easier to talk about boobs than brains. Are people more comfortable with it because they know so many other people with breasts?
That doesn't make sense really, because there are more people will brains than breasts. All people have brains, whether we tease about it or not. No one on the Wizard of Oz was wishing that they had a great rack! Some are more willing to talk about mastectomy's than the fact that my child will never have a chance a remission. He doesn't have the options like chemotherapy or radiation. He will have Dravet Syndrome forever. He will never be a "survivor" in that sense where he is "free" from his illness. It deserves just as much advocacy or more. A body can live without boobs, but not without a brain. Did you know that there are more deaths per year from Epilepsy than Breast Cancer? More. Foundations like this one have my respect but they are few. We are lucky that we can have this roller coaster we are on remind us that the downs can make you feel like you are going to puke, but the ups are thrilling. We try to focus on the ups. If you are our friend in real life, via the Internet or even just an acquaintance who happened to stop by our site, maybe you could take a couple of moments this month and educate yourself a little about seizures, know as much about them that you do about Breast Cancer. If talking about brains or seizures makes you feel unsettled, just look at a couple of websites, like CURE or Dravet Syndrome Foundation or American Epilepsy Society. Or you can think about Cole. It is easy, because he is pretty cute. We are going to continue to be advocates, even if makes others feel uncomfortable. It is important, to us. In our world, it is not too much information. It is the reason we started this blog. To educate others and provide support. I'm not promising that I will be writing frequently, but enough people came up to me at the Dravet conference and mentioned my blog that I know it is helping someone, some where. Here is to hoping that we all can have more days like this one. Outside, walking, talking, eating by mouth. Things that we can easily take for granted, but for Cole they are a victory.
