Okay, so I'm not looking for you to feel sorry for me, (although i would accept a hug if you feel led, and you're not creepers about it). I just have this in my head and since this is my virtual journal I'm going to blog about it!
I am so thankful for the time we've had without any seizures in our lives. But, as time moves along I am realizing how we are scarred from that intense year and I wonder if it's permanent. Because, just when I think that I don't have to think about seizures any longer, something little happens to bring it back.
For instance, when Phoenix was born Hewitt was about 5 months without seizures. Watching Phoenix sleep, and do all those "normal" twitchy baby things freaked me out until he was about 6 months old. I did not enjoy one bit of it (his twitchiness and eyerolling). Even though I'd watched 4 other babies do all of those things, I was convinced he was having seizures. Every flail of his arms and roll of his eyes sent me straight back to that familiar place. Hayden would reassure me that everything was fine, but in my heart (okay, and out of my mouth) I worried we were on that path again. After about 6 months of that, I finally relaxed and realized he was okay (For now anyway. Don't roll your eyes, I'm not a worrier. It could happen, you don't know).
Occasionally Hewitt will move a certain way, give me a certain look or fall down a certain way that makes my heart stop until I can see that he's okay. Sometimes when I hear a kid give a loud thud I go straight back to all those awful falls he had and how we were so accustomed to the sound of him hitting the floor. I hate it. I look for it in the other boy's too. I read once that 1/3 (roughly) siblings of kids with epilepsy have a higher chance of having some kind of neurological issues. We are just resting in where we're at and incredibly thankful for the health of our children. We are. But, we also know better now the vulnerability of that health, and so with the thankfulness comes a healthy fear of what could be. I continue to pray that we are officially and forever done with seizures. Forever. I know and can say with confidence there will be no seizing in heaven. Maybe some crazy dancing, but no seizing.
Oh, and if you just read this and have no idea what I'm talking about you can click on the Hewitt or seizures link under "labels" on the left side of the page and you can read more about it. Although, I don't really recommend it, it's sad and depressing and sometimes makes me cry.
A couple quick links: