Life is filled with beautiful moments. The nice experiences, the good memories. Absence epilepsy does not change that. Life however sometimes entails darker periods. Hard times, the difficult situations and confrontations. And yes, the latter ones may occur more often due to the disorder. That is why it is incredibly important for a parent to take time for oneself, some “me-time”. Accept outside help, share your concerns, grant yourself a little extra. All without any feeling of guilt. Self-care is essential to make life with absence epilepsy bearable. Some parents testify, read their stories below.
Do not forget yourself
Escape from the world
The small getaways. They are so meaningful. Moments when you can discharge and recharge your batteries. You let off steam to shake off the strong emotions and worries. For a minute, you forget the world around you. You live in the moment. Myriam experiences "her moment" every day after she has dropped off her son, Thibau, at school. With a big smile, she says: "As soon as I start up the car heading homewards, I insert a nice cd, I turn the volume up and sing along. For twenty minutes! My own escape from the world. Those twenty minutes are sacred to me. They are mine, and mine alone. Sometimes I dare to stretch them and I drive an extra time around the block ." Whether it takes all of Myriam’s concerns away? No, but it helps to let go. Once in a while, we all need those moments of real relaxation. How do you experience these moments?
A bowl of chicken soup
Family, friends, neighbors. They are all there for you, you know that. "If you have a lot to do and you can use an extra hand, just ask," they say. But, asking for help remains difficult. Vik, Tom's dad, testifies: "This morning, at the school gate, the mum of one of Tom's classmates approached me. We met at the Open House and since then she has often offered her help. Picking up Tom at home every now and then, taking care of him when school has ended. I just have to ask. But, even though it sometimes comes in handy, I do not like to do so as a parent. You do not want to be a burden." Occasionally accepting an open offer, however, eases the day. It creates some extra breathing space. "And sometimes it tastes," Vik continues, "like that cup of chicken soup the neighbor gave us yesterday. “Just a leftover”, she said. I doubt the latter. But it felt good." Do you occasionally accept the help offered?
What’s on your mind
People around you can be a huge support. On difficult days they understand your worries. They sometimes sense it just by giving you a glance. They search along for solutions for any question. Without you having to feel guilty about it. Without you having to do anything in return. That is why Greta, Bas’ mum, values the private Facebook group to which she belongs. "After a bad day, I can share my worries for a moment. If I have been too hard on Bas, hearing similar stories believes my guilt. If Bas makes progress at school, I share my pride. And then I always get nice feedback."
Luk, Léon’s dad, confirms. For him, such a Facebook group is also a valuable source of advice. "Unimaginable how much real experience it gathers! Practical info that doctors cannot give you. About sideeffects of certain medications or tips to tackle sleep problems. If I have a question or a certain struggle, there is always someone to help me with concrete and positive advice. Even if my question has been asked five times before!" And you? Who can you turn to?
Do you recognize this?
How do you get breathing space? Do you accept the help from outside? Who do you share your feelings with? Who do you turn to with your questions? Do you have a story like that of Myriam, Vik, Greta or Luk, or do you want to share another 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.
Big 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 suffers from uncontrollable seizures despite medication. We believe current digital technologies are able to create a massive impact on the daily life of people with epilepsy. At Epihunter we create digital solutions to make epilepsy matter less at moments that matter most. Our first solution is for people with silent, difficult to notice absence seizures.
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