Yesterday, Lucas came home with a note from school suggesting that he may have had a seizure in class and that he was very upset and screaming for a few minutes. Doctors may not have classified his screaming fit as a type of seizure but I am convinced the times he stomps, screams (as if it pain or in abject torture) and biting his finger are a yet unclassified seizure type. It isn't what is already known such as absence, tonic-clonic, head drop or myoclonic. If I had to name what I witness, I would call it the scratch-and-pull-mommy's- hair- as-I-hit-scream-and-stomp-and-as-if-I-want-to-crawl-out-of-my-skin seizure type. That is quite the adjective no professional would use so maybe the closest could be "tonic-clonic, type 2" or some such nondescript clinical name which absolutely does no justice to what actually transpires during one of these spells.
Before dinner, out of the blue and unexpectedly, Lucas had one of these seizures which lasted for 30 minutes. We are closely surrounded by houses on all sides and so to prevent any suspicion of child abuse (God forbid some Karen would call CPS) we immediately shut all windows and doors. I should know better than to try to hold him or calm him down but doing nothing and just watching makes me feel so helpless and useless and within seconds he has grabbed my hair and pulling it ferociously and has scratched my legs and arms. Imagine someone drowning in the high seas and they are grabbing onto any raft for dear life. That is exactly how I would describe Lucas in this seizure type. Einstein was right, time is relative and 30 minutes can feel like an eternity with no end in sight. Usually, I can accept his condition with a sense of defeat and resignation but this time, I felt enraged that he has to suffer so horribly, and I have to be injured; his little brother has to be startled and scared and his dad has to feel helpless. Without meaning to or even conscious of my actions, I projected all my rage and anger to the two people I love the most beside Lucas which is Tae and my husband. My short Korean temper got the better of me and I yelled at Tae for not ever finishing his meals by himself and not cleaning up after his toys. I screamed at Gabriel for stupidly repeating things I have already stated. I might have kicked a few items on the floor, too for added effect. They both fell to silence, stared at me and proceeded to quietly finish their food. Gabriel didn't try to calm me down, drown out my tantrum or match my energy with his own but allowed me to ride it out on my own terms and for that I am forever grateful.
This is the first time I really wished his syndrome away. The first time I said I wish he never had Dup15q Syndrome and all the crazy seizure crap that goes with it and that he were just a normal boy who says things like "I love you, mommy". He is 13, almost as tall as I am and with a kung fu grip that gets powerful during fight-or-flight situations such as fighting for your life during an electrical firestorm in your brain. How will I manage him going forward as he continues to grow?
When the ordeal was done, Lucas was back to his sweet self and even gave me his beautiful trademark smile and a few giggles. I was so relieved to see him back to his cheerful self but I was still very angry, angry, angry. It was as if a switch had been turned off and as if the incident never happened to him. I couldn't and didn't do much for him but I wanted to make sure I was there for him no matter what, even if I got injured because that is all I can do, just be there as a standby witness to the torture so he wouldn't have to endure it alone. That is the highest manifestation of how I can show my love for him. Witnessing a loved one going through something horrendous can be just as tortuous as for the one going through the ordeal. And it wrings my heart that I can't do more. The happy ending for me was seeing him smile and although he can't talk, it was as if he were saying, "thank you for being with me through this".
The next day I apologized to Tae for yelling at him during dinner and explained that it's because mommy doesn't like to see Lucas sick and having seizures and he replied, "It's ok mom. Don't worry, I understand. I forgive you." For being 7, he had to grow up fast and develop deeper insights into situations than I had wished. Hopefully, though, that is a good thing.
So, there you have it, an exciting dinner time at the Ahn household with me, my husband, two boys and Dup15q Syndrome. If I host a supper party, would you come?
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