What’s it like to be a mother with Epilepsy?
It is hard some days. It is hard work being completely healthy but imagine having a chain-linked fence in the way. You can reach through this fence but you are barely touching your child’s hand as they reach out for yours. Imagine having to console your children every night that mommy will be okay. Imagine your children being afraid to go off to preschool because mommy might have an “accident.” Imagine your children’s morning motivation to get up is to help you take your medication. This is motherhood with Epilepsy.
There is only so much I can do at their ages of 2 and 3 to help them understand. They try their best and try to help me. Some people question why I allow them to help me; it has helped them cope. Even though my accident has now been almost a month ago – I still have marks and every day my 2-year-old asks to see them and kisses them to make me better. They have not picked up on mommy’s jerks and probably see it as normal due to frequency but one day I am sure they will ask.
There is guilt. There is anger. There is joy. Guilt for me comes from having Epilepsy. I had a seizure and thought I dropped my newborn but luckily and probably subconsciously as well as instinctively, I placed her down to sleep. I had another seizure while they were both in the tub and the reality is that they could have drowned. There is guilt I carry from those almost events. There is guilt I carry for every tine my children worry. My anger stems from guilt. I get angry at Epilepsy. I do not want my children’s first memory being that mommy had a seizure. Unfortunately, the reality is that it was traumatic for them and that might indeed be their first memory. But alas there is joy. They are more aware, more forgiving, and kind. They understand sometimes people need help; even adults. In one aspect it brought us closer, if that’s even possible.
They are my heart and soul. They inspire me. They push me forward. I would be lost without them. They make me fight harder every day. They are the sun on my rainy days.
How do you explain to a child about your seizures?
This will depend on the age group and what YOU as a parent feel comfortable disclosing. Let us take a quick glance over the development of children.
- Infancy (0-1 year) | Coordination sensory experiences with action
- Toddler (1-3 years) | Egocentrisim, questioning through play,
- Early Childhood (3-5 years) | Rudimentary conscience, knowing right from wrong, magical thinking
- Middle Childhood (6-12 years) | Perceive past and future, questions others point of view, question beliefs, trial and error, problem solving
- Adolescence (13-18 years) | formal operations, strategic interventions, interpretation of earlier experiences
(Note that this goes a lot more in depth and by theorist; again this is a brief and simple overview)
For my children; they are about the age of magical thinking – what this tends to mean is the child may blame themselves for why something has occurred. The believe that their words have power. Also they are still routine orientated so when something gets interrupted it is an anxiety provoking experience. For me personally, I saw how much stress this caused my children. I saw their confused and tearful looks – curious if mommy was going to be okay. I decided right there I would be honest, use as many proper terms as they could grasp, and communicate with them in their own words. They call my seizures “accidents;” when I used the word seizure they automatically connected it to accident and that is how I explained it to them. When I talk about my medication, my two-year-old calls them “beans;” so that is how I explain it. It is important to explain things in a way that THEY will understand. It may sound silly but this also alleviates their stress and you know they understand what you are saying to a point.
I also decided I wanted to be transparent. I want them to know; I want them to know what to do. I feel that this would be easier for them as I am a single parent. No one else would usually be there to help them in an event or shield them from the truth so for me it was best to prepare them. Plus, they will be able to get some form of help if needed. Again, this is entirely your choice and your decision.
Did this affect them?
I cannot say for sure to what extent but as of the most recent one, truthfully it has. They worry still every day. Just earlier today my three-year-old told me she would buy be a special present if I did not have any accidents. They check on my old wounds and confirm that they are going away and they make sure to watch me take my medication. They are a lot more concerned when routines get disrupted or things have changed. My oldest refuses to sleep in her room since the accident. My youngest is starting to follow in her footsteps. I reassure them the best I can in a way they can understand but it is not that easy.
Some people may automatically blame their stress on my transparency – but I ask you to think about this situation. You are by yourself with your child/children and you fall to the floor unconscious and convulsing for 5 minutes, possibly bleeding due to an injury. What is more traumatizing? Not knowing what is happening or knowing that there is help and this can be fixed? It is a personal choice and preference and I respect everyone’s opinion, please respect mine.
From my Three-Year-Old
“What’s it like with mommy having Epilepsy/accidents?”
Kaylin: Lots of doctors…and more doctors.
“Are you scared mommy might have an accident?”
Kaylin: Sometimes..no more accidents. You have to be a good girl.
“How do you feel about mommy’s medicine?”
Kaylin: I like your medicine. It keeps you safe
From my Two-Year-Old
“What is it like that mommy has accidents?”
Autumn: Beans and doctors. Doctors give you beans
“Do you get scared?”
Autumn: mmm (did not want to respond)
“How do you feel about mommy’s beans?”
Autumn: Your beans, B6 and Keppra! Can I help tomorrow?”
What can I do to keep them Safe?
- Dress/change young children on the floor
- Bathing young children on a mat or towel and give them a sponge bath
- Get a wrist attachment for a stroller or purchase a jogging stroller (typically comes with one)
- Feed a baby/young child in the lowest position possible. If breastfeeding, feeding them in bed is a good option
- Keep your house as hazard free as possible (“baby proof”) if the little ones are mobile. That way if you are alone, less of a chance they will get themselves hurt.
- Keep medication in a secure place away from little hands
- Develop a seizure action plan if the child is old enough and if you feel is necessary
- Have emergency contacts posted somewhere for easy access for older children as well as what to do during a seizure
- Do not be afraid to ask for help if needed after a seizure. Your health and your child’s health are key priorities.
- Reduce your own risk of having seizures by taking care of yourself!
Feel free to leave your thoughts, comments, or experiences below