Oldest: "Ema can I play with Sonzee in my room?"
Me: "Yes, just be careful when you push her in the chair not to get her wires tangled"
Oldest: "Come on choupers, let's go"
(Some time goes by)
Oldest coming to me: "Ema, Sonzee is having a seizure, why does she always have a seizure when she is having fun? I was reading her a book and she was smiling and all happy and then she had a seizure again...it's not fair"
Our oldest was just 5 years old when Sonzee was born. An innocent, light brown haired, blue eyed, loving, caring, full of personality, dancing, playing around, typical big sister who has always loved to dote on her siblings and had to learn at the age of 5 what a seizure looked like in a newborn baby. At 5 years old, she was wise beyond her years, but still a bit too young to fully understand or grasp all of what CDKL5 meant for her youngest sister. Sam and I have tried over the past 2.5 years as hard as possible to protect her little mind and heart, answer her questions, give her only necessary information, and essentially trying our best to support her innocence a little longer. However, our little girl is becoming older, smarter, and now at the age of 7.5 she understands more, hears more, knows more, feels more, and hurts more.
I am not quite sure what hurts me most about Sonzee's seizures during her sibling playtime, the list is so long. I hate that it disrupts a happy moment occurring between them all. I hate that she has seizures in general and they occur so often that this conversation happens at least once a day. I hate that our oldest must experience at 7.5 what I do now at 33. I hate the sound of defeat our oldest has in terms of her play session being cut short due to the seizure "because Sonzee was having so much fun". I hate that my only answer is "I know it stinks you guys were all having so much fun". I hate that our 7.5-year-old rebuttals with "why does it ALWAYS have to happen". I wish my reply could include more substance than "I don't know, it is such a bummer". It ALL hurts. It ALL breaks my heart.
The silver lining comes at the end of the seizure, when I relocate Sonzee to her bed to rest and her oldest sister asks if she can finish reading to her in her room. Our oldest and I have one of our typical sevenager disagreements because she wants to show Sonzee the pictures and cannot reach her crib, and I assure her it is ok, Sonzee will just listen because she is too tired at this point to look at the pictures anyway. I leave the room to two sisters, the 7.5-year-old reading to the 2.5-year-old and can almost for a split second forget the events that preceded and the fact that one of them has intractable epilepsy. I will replay the events in my mind and will pray that tomorrow's playtime will go differently, but first I will memorize this image...because this gives cushion to the pain. This love that our oldest has for her "twin-girl" is something that brings tears to my eyes. She has her own twin size bed, with a memory foam mattress (that I personally think is extremely comfortable), but instead insists on sleeping on a toddler bed in Sonzee's room. This brings me a wave of comfort even if it is just a ripple.
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