Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow. ~Mary Anne Radmacher
Doesn't that quote just give you the shivers? I love it. It's so very true.
Friday, February 25, 2011
Wednesday, February 23, 2011
Just...amazing.
I'm writing this from my kitchen table after one of the best days I've had in awhile. It struck me today just how much work I've put in to epilepsy awareness, and how awesomely it is paying off.
Today we had our district convention for student council in Corsicana, TX. Our sister school, Killeen High School, was running for a district position using their epilepsy awareness platform. Their theme, "Step Up for Epilepsy Awareness" was perfect, and their presentation warmed my heart. Honestly, I got a little teary eyed. They were just awesome. Later, their sponsor told me that it was just a small portion of what they had planned for their state presentation, and that they still had some work to do. You know what I say? Awesome. Seriously, just...awesome. I love that 40-50 kids that six months ago had no idea about epilepsy are working quite tirelessly perfecting a performance that, if nothing else, is going to make people more aware of this nasty condition. I. Love. It. It's moments like these that I feel like we might just win our war against epilepsy. I will forever be thankful to their sponsors for taking up this fight. You guys have earned a place in my heart.
In other news, we had to add another 100 mgs of Carbatrol to Liz's morning medications after the seizure last week. I feel like we're on the right track for seizure control through this series of medications. It could be so much worse than it is, and I'm thankful that she's responding so well to Carbatrol. Although, I could live without the mood swings. They are nasty.
Side note: I lived in England eleven years ago, and went to school there for a semester. I met some of the most amazing people there, and I've held them very close to my heart in the years since. My professors/house parents were some of these wonderful people, and they have a sweet daughter that over the weekend, she experienced three seizures. Their entire family has kind of been thrown into the deep end of this mess, and they're doing their very best to stay afloat. Please, keep this sweet family in your thoughts/prayers. I know they appreciate it.
I've added a few links that you all should check out. My favorite is a link to the website/blog of Paulette George. She wrote a book called "Good Morning, Beautiful" about her daughter and their experience with epilepsy. If you do nothing else today, please go to that website, and read her blog. It hit so close to home that as I was reading it, I thought to myself, "How does she know our story?" I emailed Paulette, and she kindly responded to me. What a sweet soul. Thank you for sharing your experiences, Paulette.
I'm going to go to bed while I can fall asleep with a smile on my face. I love you all.
Today we had our district convention for student council in Corsicana, TX. Our sister school, Killeen High School, was running for a district position using their epilepsy awareness platform. Their theme, "Step Up for Epilepsy Awareness" was perfect, and their presentation warmed my heart. Honestly, I got a little teary eyed. They were just awesome. Later, their sponsor told me that it was just a small portion of what they had planned for their state presentation, and that they still had some work to do. You know what I say? Awesome. Seriously, just...awesome. I love that 40-50 kids that six months ago had no idea about epilepsy are working quite tirelessly perfecting a performance that, if nothing else, is going to make people more aware of this nasty condition. I. Love. It. It's moments like these that I feel like we might just win our war against epilepsy. I will forever be thankful to their sponsors for taking up this fight. You guys have earned a place in my heart.
In other news, we had to add another 100 mgs of Carbatrol to Liz's morning medications after the seizure last week. I feel like we're on the right track for seizure control through this series of medications. It could be so much worse than it is, and I'm thankful that she's responding so well to Carbatrol. Although, I could live without the mood swings. They are nasty.
Side note: I lived in England eleven years ago, and went to school there for a semester. I met some of the most amazing people there, and I've held them very close to my heart in the years since. My professors/house parents were some of these wonderful people, and they have a sweet daughter that over the weekend, she experienced three seizures. Their entire family has kind of been thrown into the deep end of this mess, and they're doing their very best to stay afloat. Please, keep this sweet family in your thoughts/prayers. I know they appreciate it.
I've added a few links that you all should check out. My favorite is a link to the website/blog of Paulette George. She wrote a book called "Good Morning, Beautiful" about her daughter and their experience with epilepsy. If you do nothing else today, please go to that website, and read her blog. It hit so close to home that as I was reading it, I thought to myself, "How does she know our story?" I emailed Paulette, and she kindly responded to me. What a sweet soul. Thank you for sharing your experiences, Paulette.
I'm going to go to bed while I can fall asleep with a smile on my face. I love you all.
Wednesday, February 16, 2011
Another One...
Liz (my daughter) had another seizure yesterday. That's three in just over a month. I know a lot of parents with children that have epilepsy would commit a crime to be able to only have three seizures a month. Truly, three seizures a month in comparison to over a hundred a day seems relatively minor. The thing is that it isn't minor to us. Up until a month ago, it had been three years since her last tonic clonic seizure. We had gained so much in that time. She learned how to read and count. Her fine and gross motor skills had improved so much that she was released from occupational therapy. She was doing awesome.
Last night while we were reading, she struggled with words that she knew. It could have been a postictal cognitive slowing, but what if it wasn't? What if it is the beginning of a loss of skills that she's gained? It's a scary time.
Last night while we were reading, she struggled with words that she knew. It could have been a postictal cognitive slowing, but what if it wasn't? What if it is the beginning of a loss of skills that she's gained? It's a scary time.
Monday, February 14, 2011
Sometimes...
Sometimes when things are really terrible with my daughter's health, I imagine myself as a knight, and her epilepsy as a dragon. Usually in this fantasy, I look like Alice from the new "Alice in Wonderland" movie. I have a sharp, shiny, dangerous sword, and I'm looking to defeat this huge, angry, scary dragon that's threatening my daughter's life. Because it is my fantasy, I slay the dragon, and my daughter is safe and healthy.
Don't you wish you could will your imagination into actually being reality?
Don't you wish you could will your imagination into actually being reality?
Friday, February 11, 2011
Catching Up
My heart is heavy today. Nothing terrible has happened, but I'm just so....sad, I guess would be a good word. I'm yearning for the normalcy of our pre-Christmas lives. Ever since my daughter was hospitalized for the kidney stones, I feel like we've been in a tailspin, and nothing I'm doing is helping to stop it.
The Carbatrol has affected her moods, and I'm not afraid to admit that it is frustrating. When her ADHD med and the vitamin B-6 has had a chance to take effect, my daughter is the sweetest person on the planet, but otherwise, she is combative and, at times, downright mean. She hits. She kicks. She bites. She acts out and tries to cause pain just because she can. When she's "normal", she realizes why her actions are wrong, and she feels immense guilt. This morning getting ready for school was particularly difficult. She tried to kick me several times, and tried to run from the bathroom when I tried to give her morning meds to her. After a few minutes, it was like her fog had cleared, and she said, "I'm so sorry, Mommy. I don't want to be mean. I can't help it, though. I think there's something wrong with my brain. Is it sick?" I cried with her for a little bit, and I told her that no matter how mean she is sometimes, I will always love her, and it's okay because I know she doesn't mean to be mean to me.
My daughter is one of the sweetest souls ever put on this earth. This is so much harder than it has been in the past because she is aware of what is happening to her. She's confused, and no amount of explaining has helped. For the first time in a long, long time, I don't know what to do.
On top of everything else, she still isn't gaining any weight. I've been calorie loading that poor child for weeks, and NOTHING has changed. I'm afraid she needs to go back on medication to make her hungry.
As a side note, I've requested that we see a ENT specialist to see about having her tonsils out. Since before Thanksgiving, she's been a carrier for strep throat, and she's been getting sick every few weeks as a result. Every time she's sick, her seizure threshold goes down, and then when we do a round of antibiotics, the threshold goes down again. It's just not healthy any way you look at it to continue on this path.
I'm just tired. I feel like every time we get back on our feet, they're kicked out from under us again. She's been through so much, and I can't help but wonder when enough is finally going to be enough.
The Carbatrol has affected her moods, and I'm not afraid to admit that it is frustrating. When her ADHD med and the vitamin B-6 has had a chance to take effect, my daughter is the sweetest person on the planet, but otherwise, she is combative and, at times, downright mean. She hits. She kicks. She bites. She acts out and tries to cause pain just because she can. When she's "normal", she realizes why her actions are wrong, and she feels immense guilt. This morning getting ready for school was particularly difficult. She tried to kick me several times, and tried to run from the bathroom when I tried to give her morning meds to her. After a few minutes, it was like her fog had cleared, and she said, "I'm so sorry, Mommy. I don't want to be mean. I can't help it, though. I think there's something wrong with my brain. Is it sick?" I cried with her for a little bit, and I told her that no matter how mean she is sometimes, I will always love her, and it's okay because I know she doesn't mean to be mean to me.
My daughter is one of the sweetest souls ever put on this earth. This is so much harder than it has been in the past because she is aware of what is happening to her. She's confused, and no amount of explaining has helped. For the first time in a long, long time, I don't know what to do.
On top of everything else, she still isn't gaining any weight. I've been calorie loading that poor child for weeks, and NOTHING has changed. I'm afraid she needs to go back on medication to make her hungry.
As a side note, I've requested that we see a ENT specialist to see about having her tonsils out. Since before Thanksgiving, she's been a carrier for strep throat, and she's been getting sick every few weeks as a result. Every time she's sick, her seizure threshold goes down, and then when we do a round of antibiotics, the threshold goes down again. It's just not healthy any way you look at it to continue on this path.
I'm just tired. I feel like every time we get back on our feet, they're kicked out from under us again. She's been through so much, and I can't help but wonder when enough is finally going to be enough.
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