(I’m stuck in the hospital, which means lots of posts to pass the time. 😀 So sorry!)
Ever since we’ve been on this journey, I’ve sought out information and experiences, largely from online blogs, sites and social media. (Facebook has honestly been one of the greatest things in terms of getting in touch with people and learning.) We wanted to know what we might be able to expect with Emmett’s disease, but I also look for words to describe what we’re going through, to explain why we might feel certain things. (A part of the reason I decided to start this blog, in addition to letting our friends and family know what’s going on, was because other blogs have helped me so much.)
This mom’s blog – whose second son also has Ohtahara’s Syndrome – is amazing. (You’ll see in her latest post a mention of me because I reached out to her to let her know!) Anyway, I happened to see someone on Facebook mention today the comments they get sometimes, and how – while it’s so well-intentioned of people to tell you your child will “grow out of it” – sometimes it stings. It reminded me of one of this mom’s blog posts. I won’t do a good job summarizing what she said so I’ll just copy/paste it verbatim. The link to the entire entry follows.
“Brett and I are constantly complaining to each other about things people say to us like “oh hopefully he’ll grow out of it, you never know.” K, here’s the thing, at one point we longed for those stories of hope, it was all we wanted to hear about. It gave us hope that our dreams for Foster could still come true. But at a certain point, like when specialists are telling you that you have a terminal child, hearing things like that feels dismissive. I either put a wall up and think that the person didn’t listen to anything that I just said, or they’re implying that I should just try to think positively. Which in my mind feels like they think I don’t have the right to feel whatever I’m feeling. I realize that’s likely never the intention and a lot of people really don’t know what to say, a great response is actually much simpler then people realize. “That sucks” is the perfect response, it totally validates what we’re dealing with. The worst is probably when we explain Foster’s epilepsy and then someone says “oh you know, I have a cousin that has that.”….No…you don’t. Epilepsy is probably the broadest diagnosis in the books. All it takes to be given a diagnosis of epilepsy is two unprovoked seizures in a lifetime. Clearly that is not the most likely fatal disease that Foster is suffering from. But as I mentioned before, these severe forms of epilepsy are rare and if anything the epilepsy community as a whole is fighting to make people feel comfortable with the word epilepsy. Most epileptics will go on to lead totally normal lives, they can have successful careers and raise children, they can lead lives that would never indicate to anyone that they have epilepsy. And for this reason, most epileptics want people to think of the word epilepsy as a minor detail. The awareness that’s out there is to encourage people to feel comfortable around epileptics, to know that they most likely wont have a seizure in your presence and that they certainly are not contagious or dying. While I can understand that this is beneficial to the majority of epileptics, it certainly doesn’t benefit those who are severely suffering. But how can I blame people for their instinctual responses when they really aren’t aware of anything different. So even though epilepsy awareness month isn’t until November, it’s important for our personal sanity that the people in our circle do understand the difference. And I guess that’s my job to educate people on the matter.”
All that said, we’re not in fatalistic mode and I do try to think optimistically and hope for the best. But I also am realistic about the battle we’re facing, and like the mommy blogger, want to encourage people to understand the difference when it comes to complex medical issues. ❤