As a big brother, Frederik can cope with Ine’s epilepsy. He is very responsible and caring. If the family goes on a trip, he is the one who asks: "Mom, did you not forget Ines pills?" - "As if that’s the concern of a thirteen-year-old" - sighs his mother, Karen.
Uncertainty, every day
Cancel plan Efteling
Also his teachers find Frederik more mature than his peers. "And yet," Karen says. "Also he remains a child who, with moments, has difficulties. Also he deserves care and attention." Karen does everything to avoid that Frederik misses attention. Like planning a family day at the Efteling last Saturday. At least, if Ine’s absence seizures hadn’t suddenly changed the plan. Seizures the night before and the subsequent tiredness threw a spanner in the works. No loops and pan cakes for Frederik. Cancel plan Efteling.
Mom, can I learn to drive?
Daisy, Gert's mother, also recognizes how difficult it is to make plans and promises, or to look forward to the future. That is not only true for plans for today. Especially future prospects make life with absence epilepsy hard. "Life events that appear almost natural to other children aren’t evident for Gert," Daisy testifies. "Yesterday, Gert asked me if he could learn to drive a car. He will soon turn eighteen. At the moment, Gert is not able to drive a car. But, you never know, maybe later? What do you answer? Could I say that driving a car is rather something for later? You don’t want to give your child false hopes, but you don’t want to disappoint it in the eyes either." Do you recognize this struggle?
Every family has its own future questions. Marc and Anja, Tom’s parents, have one they share with lots of other parents: The care about where Tom will live one day. "We want Tom to be a bit independent. But, what is the best? A house with friends? There must be continuous guidance then. Maybe that is too complex? Cohousing?" Absence epilepsy is so complex. The progress of the condition difficult to estimate. That’s why the 7-year trajectory from Tom's birth until now has already been very unpredictable. Marc and Anja try not to worry too much and think positively. But still, the question gnaws. How do you deal with it?
Do you recognize this?
Do you recognize the doubts and uncertainty about what the future brings? Do you have a similar story to tell? Do you want to share an experience? Whether you have (absence) epilepsy, or someone in your immediate environment: a parent, sister or brother, best friend or neighbor. Every story touching the topic "living with" absence epilepsy, and every experience, small or large, can be incredibly recognizable to others. Mail us these stories. We give them attention! No need to worry, your story can be as anonymous as you want.
Thanks to the parents who already shared their story and hence, gave substance to this blog.
Why we do what we do
1 out of 3 people with epilepsy suffer from uncontrollable seizures despite medication. We believe current digital technologies are able to create massive impact to the daily life of people with epilepsy. At Epihunter we create digital connected solutions to make epilepsy matter less at moments that matter most. Our first solution is for children with silent, difficult to notice absence seizures.
Let’s think together!
Are you a parent of a child with absence seizures? Let’s get in touch! Do you know other parents? Tell them about Epihunter. The more families we hear, the better! This way we learn about and understand their needs better so we create the right solutions for the right needs.