This article was written in 2019, but is still burning hot.
Kids in bed. Time for some rest. TV on, shoes off, snack and drink ready ... . What else should you have? Right, the tablet with the camera app. Time to monitor our daughter. After 4 years, it's a habit: watching TV with one eye, the other keeping the camera in sight.
The little sister of 4 is in the big bed right next to the big sister of 7. Explain to the youngest that the big sister can stay in the big bed (next to mom or dad) and that she has to sleep separately.
When the explanation was given that big sister "was sick, had to shake and therefore stayed overnight with us" the youngest suddenly got a sore throat and had to stay overnight that night too... . She handles it well, though, that dear little sister. Whenever there is an epileptic seizure and she sees her sister suffering, she comes with a blanket, a cuddly toy or comes to stroke big sister's forehead.
How would she feel?
8 p.m., she's been asleep for half an hour. Would she be through today? Could it be that there is no seizure on the menu? Could it be that she is getting 24 hours of physical and mental rest?
8:24 p.m.: AUW. "Aaauuuww. Maa? Mamaaaa?" On camera, eyes shoot wide open. Left arm raised, first shocks emerge, she is already out of this world. Would she now feel like Will from Stranger Things in the Upside Down? Anxious? Sad, would she know anything about it? Secretly we hope not. Such a sweet and beautiful girl, but so alone and full of pain at that moment.
Time to sprint upstairs. Door open, light on. Reflexively checking to see if little sister wakes up. Dreamland apparently has well-insulated walls.
Focus
Focus on oldest sister. Not too bad, little blood from inner jaw, sweating hard, but no cataract attack.
Ironic really, hoping it's a severe shock attack. Shock represents pain, blood, saliva, cramped muscles. The cataract attack, however, brings her much closer to death. 'Sudep' (Sudden Unexpected Death in Epilepsy, nvdr) was in the news only recently. Our greatest fear is it, waking up next to a daughter who won't wake up.
Two minutes on, the shaking diminishes a little. Out of sheer experience, we wait for her first sigh, only to be ready for the second part of the seizure.
Part 2 of the attack
Here goes. *Sigh*. Muscles cramp back, teeth hard together. Fortunately, they are still strong teeth. With all the effort in the world not trying to pull the jaws apart, not bringing those cramped arms down. With an anxious heart watching the clock. 4.5 minutes ... Are we going to bring in the valium?
Here comes sigh number 2. The brain is reset. Whole body comes to rest. Remove blood and saliva, get ready in safety position, check breathing and tuck quietly under.
Normally she falls asleep and wakes up by 5:30. Today is different. With all the effort in the world, she opens her eyes and looks straight at us.
Sisters
"Wha? Where?" Calm down baby, just go to sleep. You twitched, but everything is fine. "No! Where is ...?". Trying to talk with a double tongue must not be easy. Say? "Sis?
Sis is with you, dear. She will always be there for you. Just like you will always be the sweet big sister. Go to sleep, tomorrow is a new day. Another day with new hope. Another day where science has been able to work on a new solution. Another day ... like every day.
#epilepsy #sisters #weatherday
