December 27, 2011
It's not the first year things have gone this way for us and I know of a lot of families dealing with seizures on Christmas. The lucky ones don't call 911 or visit an ER. It puts a unique twist on how the morning and the rest if the day goes.
For our family there were no 911 calls and for this we are thankful. Evan was groggy and seemed to be going through the motions as he opened his gifts until he opened Pokemon cards and Beyblades of course. By the afternoon he was back to being his normal cheerful self and loved going to the Chinese restaurant for Dim Sum.
We have so much to be thankful for and we say this everyday. Maybe Santa will do better with my single wish next year.
October 19, 2011
Rob and I exchanged glances not knowing exactly what to say. Do we tell him that children do die from seizures? Do we say that we just heard of a 6-year-old child who was taken from this world too soon? Do we confess that this is our biggest fear? No, that reality is too cruel and too hard to comprehend at his age. Instead we nodded reassuringly.
That conversation hung with me all night. I'm not ready to have a conversation with Evan about his mortality and I don't think he is either. I know our choice to avoid this conversation is right for the moment but I also know we need to figure out how to tackle this tough topic.
Then at a little after 11:00 we heard Evan kick the wall and make a strange noise. We rushed onto his room to find him having a seizure. We gave him the medication to stop the seizure and waited...6 minutes. Too long but not as long as the last one. I couldn't help thinking about his comment earlier in the evening and that we were once again spared from my biggest fear.
July 10, 2011
The first thing we have to do is fulfill a fundraising commitment to 4 Paws for Ability who will train a dog specifically for Evan. We will be raising $13,000 and have just begun this endeavor.
If you want to keep us with our progress, we have a blog set up and you can sign up to get email updates as well:
I know that this marks the beginning of a new chapter and we are all very excited about it!
June 30, 2011
If I had to use one word to describe Evan, I’d choose comedian. He loves to tell jokes and make people laugh and his comedic timing is beyond his age. He is also charming, sensitive, thoughtful, active, smart and extremely social. He loves Pokémon, riding his bicycle, playing video games and reading. He adores his older sister and the two have a very close relationship.
Evan’s doctors, therapists and teachers use different words to describe him: Tuberous Sclerosis, Epilepsy, Retractable Seizures, Cortical Tubers, Angiomyolipmoma, hypomelanotic macules, Processing Disorder, Hemiperesis, Increased Tone, Pronation...
Both descriptions are correct but we strive to provide an upbringing for Evan that will not define him by his disorders. We are well aware of how they impact him on a daily basis, but he is so much more than the sum of his challenges.
April 11, 2011
I talked to Rob after the seizure had stopped and Evan was sleeping peacefully. Later I thought about how odd our conversation had been. The seizure "only" lasted about 5 min and I gave "just" one dose of rescue meds to stop the seizure. It has been 17 days since his last seizure and we commented on how great that was too. None of this is good, in fact, it's pretty bad. Yes, it's an improvement and we're happy to see that but this is not a good situation.
I hate the feeling of chasing after the illusive ideal of seizure freedom. I hate epilepsy and all the challenges and restrictions it brings to my family. I am fearful of what it will do to Evan if we can't get in front of the seizures and the effects it will have on Aria as she watches from the sidelines.
I got Aria off to school and then waited quietly for Evan to wake up. When he did he was feeling great. He was in a cheerful, talkative mood and went to school at 10:00. When I dropped him off he was chatting dramatically with the school secretary as she escorted him to class. He told me when he shows up late to school after having a seizure everyone is happy to see him and shouts, "Evan's Here!"