New Blog

Unfortunately, my little guy’s battle with epilepsy is not over.  Even after 3 surgeries.  😦

I haven’t been blogging like I did when he was originally diagnosed, and I miss it.  I recently received a couple of really sweet emails from other parents of babies with I.S. who had found my blog. They shared some very kind words which encouraged me to start blogging again.  It’s quite therapeutic for me, and if I can help other families at the same time, well it’s a win-win.  When I started to sit down to write though, I realized why I hadn’t been keeping up with it.

Privacy.

Yes, I know, that’s a weird worry to have when you’re posting online for all the world to see. The difference now is that I realize that I still have hope that someday my little guy will grow up, go to school, graduate from college, get a job, have a girlfriend, marry etc.  I don’t know if or when any of these things will happen, but I still have hope that they will, and I don’t want someone (a future bully, a future boss, a future girlfriend, etc) to google him and inadvertently find out all this personal stuff about his rough start at life.  He is a warrior and should be immensely proud of himself for everything he has endured.  But he should be the one who chooses to share his story if and when he so chooses.

So, long story long, I want to continue blogging, but I want to do so in a way that can help other parents going through this but without using any personal details.

If you are another parent going through this battle with your child, please feel free to email me if you want to keep up with our story.  I’ve been on both ends, so I know from personal experience that these kinds of blogs are good for both the blogger and the reader.

If you are a friend or family member, please feel free to reach out to us with questions about how our little guy is doing.  It’s actually quite nice when people take the time to reach out, because so many of our friends and family don’t.  I know it’s because they don’t know what to say. But, for us, or anyone you know going through something like this, it really doesn’t matter WHAT you say, just that you check in once in a while.  It can be very lonely when people just stop talking to you because they don’t know what to say, and it’s already a pretty lonely situation.  But, I guess through this journey, we’ve learned who our real friends are (and to be honest, it has been a bit surprising).

Thanks to everyone who has followed Z’s story.