Comments on Fighting Monsters with Rubber Swords: Christmas Eve, 2011

This is my first visit to your blog. My daughter h...

2011-12-31T11:10:41.429-06:00

This is my first visit to your blog. My daughter has many neurological and mental issues. She suffers from mental illness, sprinkled with strange neurological disturbances (that can't be explained), and tremendous learning disabilities. I should not forget ANXIETY. Every day, sometimes month, a piece of the puzzle falls into place. There is no name for all that plagues her, but we have a better understanding of her. I am only now (she is 10 1/2) starting to understand what she needs in terms of a proper education for her needs. I am tired of the school district pushing the "much needed socialization" button. No one talks to her - they talk ABOUT her and she is aware. She hasn't a friend in the world. I am accepting that she is a solitary person who lives within her imagination (out of necessity). I appreciate your comments on religion. We have a hard time with the fairy tale thing, too. However, my daughter loves fairy tales, and church would probably be a place that would be comforting to her. She needs to believe there is a "plan," someone watching over her, angels, and heaven. Thanks for posting your blog. It is helpful for those of us who struggle each day with diseases of the brain in our children. It can be a lonely place.

for me, at least, the big "f" Faith, it ...

2011-12-26T23:21:23.241-06:00

for me, at least, the big "f" Faith, it isn't easy. i spent years struggling to find it. i was raised academic (4 parents with phd's, working at a university). at 11 i was "born again".. then i tried the episcopal church during college, then wiccan, buddhist, unitarian universalist (10 years), then Mormon!, presbyterian, and i've settled into the episcopal church with buddhist and wiccan spiritual influences and mormon practicality influences.

i love being episcopalian. i feel at home in the rituals. it's the church my father was raised in, and is buried in the graveyard of one. i love the liberal politics. i love discovering God.

but still, it isn't easy. my practical, leaning towards scientific, brain has to accept the thing that isn't researchable (i'm on the cusp of a phd in education) as the foundation of my life. and my self that struggles with depression has to be able to find the arms of He who can't be seen to wrap myself in on lonely depression filled nights. finally, my enculturated towards violence self has to find forgiveness for people i'd rather lash out at because that is what Christ has challenged me to do. it's not easy, no. this is one place where i do fit in, but it's not easy. (i have to admit, though, that i don't fit in culturally to church communities due to my being 38 (nearly 39), single and childless.) the challenges, at least for me, that God has put before me, go against my inclinations and sometimes i'd just rather that He would have left me alone.

-brooke r, from rivervision

You guys seem to hammer out adjustments, my experi...

2011-12-25T23:40:02.363-06:00

You guys seem to hammer out adjustments, my experience with the E-Monster is perfecting this very art. I'm mire of a festivus for the rest of us girl, I hope you enjoyed your winter celebrations!

I don't have any first (or second or third) ha...

2011-12-24T17:16:29.566-06:00

I don't have any first (or second or third) hand experience with seizures, but you reminded me of a quote from a book that was written by a dad whose child died of cystic fibrosis. he was writing about how when she started laughing, towards the end of her life, it would bring on terrible coughing fits. he said (and i'm paraphrasing), "it seemed cruel to me that the things that had the power to make alex happiest could also bring out the worst in her."

i know that stress, busy-ness, and strong emotions can be contributing factors to seizures. hopefully schuyler will continue to not allow the worst to destroy the best.

I've been following your blog for a while and ...

2011-12-24T15:47:13.704-06:00

I've been following your blog for a while and this post hit me - the monsters in our kids brains that make it difficult for them to express their thoughts kills me inside. My son doesn't have the seizures like your precious daughter has, but I know too well about not knowing what's going on inside my little guy's head. Thank you for posting your excerpt from 2008 - it explains my thoughts almost exactly. Thank you.

Rob, I wish I didn't know that post-ictal faci...

2011-12-24T09:32:50.262-06:00

Rob, I wish I didn't know that post-ictal facial expression so well. You are smart to be watching for patterns and documenting things which may seem unrelated. Like snowflakes, every person's response to medications, triggers for seizures, etcetera will differ so I wouldn't dream of suggesting any particular medication or treatment approach. Instead, I will offer a sincere hope that you have a good working relationship with Schuyler's neurologist or that you find a doctor who treats you and Julie as a vital part of Schuyler's team. It can make all the difference in the world; other than Schuyler herself, no one knows her better.

I wish you, Julie and Schuyler all the wonders of the holiday season and a very Happy New Year.

. . .Rob, does Schuyler take any anti-seizure meds...

2011-12-24T08:05:15.636-06:00

. . .Rob, does Schuyler take any anti-seizure meds yet?

Schuyler's seizures sound very much like Hannah's were at the beginning. . .and like Schuyler, hers were tied to her menstrual cycle. She started having the big ones about 6 months after she started her period. That started a science experiment of trying to find a med that would control them. It took three years until we found one, but she has been seizure free now for over 4 years. (She is 22)

Problem is, the anti-seizure meds are all powerful drugs with a lot of side affects. We resisted the one that we were told would more than likely work the best because of it's adverse side affects. . .but the older she got, the potential of secondary injury became too great. When the onset of a seizure happened while she was in a swimming pool (fortunately her sister and dad were right there). . .and then near the top of the stairs on the second floor at her high school. . .and then the scariest one I witnessed. . .standing in the kitchen with a knife in her hand making a peanut butter sandwich and all of a sudden her hand (with the knife) started flailing around. . .we knew what she was taking wasn't working.

Sometimes she would have that "aura". . other times not, they would just hit and we would get her to the floor or couch as fast as we could before she would fall. She was always disoriented, irritated and tired afterwards. In the early days, she would sleep for several hours after one hit.

If she does start taking a med. . .one of the most important things to watch for are mood changes. On most of the ones we tried that was always a component. Each med has a list of side effects as long as your arm. . .but you never know which side effects are going to affect your child. One time they added a second med to what Hannah was already taking in hopes that it would do the trick. Within several weeks she was headed into a depression. We got her off that med and that was when we decided to try the med the doctor recommended. In Hannah's case, Depakote is the one that has worked for her and we have dealt with the side effects. But every child is different. It really is a science experiment.

Take care. . .

The poem made me cry, as did much of your post. I...

2011-12-24T07:41:55.236-06:00

The poem made me cry, as did much of your post. It explains exactly how I feel at Christmastime in terms of faith or lack thereof, and I know what you mean about knowledge and the possible seizures. There's something about knowing and understanding that makes everything more bearable and manageable. The two themes tie together, in a way.

Agnostics believe in the "there may be more i...

2011-12-24T06:15:54.277-06:00

Agnostics believe in the "there may be more in heaven and earth". It's true atheists that don't believe at all. My issues have to do with formal religious practises of any kind.

Hope you and yours have a good Christmas weekend.