I was meaning to post this video and discussion last month since November is both the anniversary of Kid's official diagnosis and also Epilepsy Awareness Month. But I have to say that I'm trying to push down my state of worry (and moments of hopefulness... lest they be dashed) and talking about it or thinking about it has been difficult.
Today was the last day that Kid will take her anti-seizure medication. This morning she had her last dose... maybe forever... maybe for now. The uncertainty is overwhelming.
Today, by chance, the nurse who came to give us our life insurance physicals revealed (for no apparent reason) that her son has epilepsy. Boy did that bring up a lot of feelings. His is not the same as Kid's but not that different. We had a lot to talk about and it really made me wish that there were more support groups geared toward the parents. Many places don't have a support group at all and if they do it is for caregivers of adults with epilepsy. We had so many things in common... the mood swings... unexplained fevers and vomiting... the bed wetting (who freaking knew? Kid wet the bed twice since weaning her meds and I guess that can be a sign that she was seizing... all new levels of worry are entering my mind).
So I'm sitting with it. I'm just trying to stay the course. I'll talk more about it when I can do it without having to think so much. I'm also thinking of taking the family to D.C. in the spring and participate in the annual Epilepsy Walk there. It might be nice to talk with other parents. It might also do some of them good to see a child who has (hopefully) made it to the other side of their journey... give them a little hope that there (sometimes) is an end.
Subscribe to:
Post Comments (Atom)
9 comments:
I hope that things stay very uneventful for kid and your family!
I think I've told you this before, but my sister and brother were diagnosed with epilepsy when they were teenagers. My father was epileptic too. I'm so hopeful for you and the Furious family to leave this behind you. Hug with pants on.
Oh, Mrs. F...I'm so sending over big hugs to you and Kid...and I really can't believe that there aren't more support groups-sometimes, the best information comes from other parents rather than the doctors!!! Husband and I go on Friday for his appt. w/ the neurologist-it seemed like such a long ways off and now its here...I'm both relieved and anxious all at the same time-I know you know how it is but the roller coaster of emotions and the not knowing is about to send me over the edge!!!! I think I need to try Kid's trick of just putting a pillow over my head! :)
Well if you do come to D.C. in the Spring, be sure to call me and we'll meet up! That would be fun.
And I agree, there should be more support groups.
Yikes, how scary!
Remember that all sorts of things can cause bedwetting. You had a big move, a new school, etc. all sorts of really big changes in her life. Don't immediately jump to the worst possible conclusion.
I'm sorry you're all going through this, I hope that Kid stays seizure free, and you can eventually be (almost) worry-free!
I'm so sorry you are having so much stress. I'm sure I would be a complete basketcase in your situation.
I'll keep y'all in my prayers.
Thinking about you guys, see email.
Keeping you all in my thoughts & prayers.
Stay strong. :)
Thank you for sharing with us - I have had epilepsy in my family and it does color your world for a long time - the person did "grow" out of it - I wish for you peaceful days.
Post a Comment