WHAT ABOUT ME?
I hear what you’re not saying…
I know you have worries…ASK ME ANYTHING
Every family is as unique and special as the relationships within it. Each family member influences the others in what they do, what they say, and what they don’t say. Nowhere are relationships tested more than when the family needs to navigate the world of disabilities. When the disability is epilepsy and the one affected is a child, the family is faced with many distinct challenges. One significant challenge is developing healthy relationships among siblings. Setting the stage for the healthy social and emotional growth of each child relies on first recognizing that there is a job to do.
Research has shown that having a brother or sister with epilepsy in the family is an individual experience, and often reflects the severity of the epilepsy, the ability of the parents to manage family time well, and the ability of the parent to not overprotect the child with epilepsy.
Siblings of children with epilepsy have been known to feel a wide range of emotions. They may carry a sense of guilt or protectiveness. They may feel jealousy due to the amount of care and attention those with epilepsy may need. They are often put in a place of responsibility, while others their age would not have to ensure the safety of their brother or sister. They may have a difficult time in finding their place in all that is happening around them. It is imperative for them to realize how important they are as an individual,and as a brother or sister.
It is essential for parents to be able to find a balance so each child knows how special they are. One way to navigate these muddy waters is to recognize that at any age a certain amount of information about epilepsy is important to share. Also, brothers and sisters would benefit from knowing that their questions are welcomed and a frank (age-appropriate) answer will be presented. Incorrect assumptions developed at a young age can lead to a lifetime of unnecessary anxiety.
Personal experience is often the best teacher. And, meeting a peer can be incredibly valuable. So, we would like you to connect with one sibling and her family and follow their journey as they discover a less bumpy road to follow. You will be able to learn from their monthly blog and ask questions.
In 2012, our family’s lives changed. My oldest daughter, Laura, was 8 years old, and diagnosed with epilepsy. We didn’t recognize what was happening with our daughter. Her seizures weren’t what we were familiar with. We just knew something was happening. In the beginning it was very stressful and confusing. We have no control over this. As parents, we feel we are supposed to make things better for our children. This was a situation where my husband and I felt powerless. We began trying to find answers. What we have found was that knowledge helps! We can’t fix this for her, but we can make sure she is not alone, and others around her know how to help her if she is in need. We never realized how many children and adults feel they need to keep the fact that they have epilepsy from others.
As parents we were confused and scared for our daughter, but we got a wakeup call one day. Laura had just had another seizure; we were feeling panicked and afraid for her. I looked up and saw my youngest daughter, Emma, watching everything that was happening. We saw the look of concern, fear, and confusion on her face. It was at that moment we realized the affect this was having on her as well.
My daughters are very close in age and with each other. Emma was watching what her sister was going through, and watching her parents. Parents should provide their children with security, comfort, and love. Her world was rocked by this just as much as it was for Laura and us. She got lost in the shuffle; concerned family calling to check on Laura, doctor appointments, vigilantly watching over Laura, and much more. All of those things were necessary, but what did it do to Emma? Our girls are usually always together, so it comes to reason that Emma had seen more of Laura’s seizures than anyone!
When our eyes were finally opened, I asked Emma if she had any questions or anything she wanted to talk about. I heard my 6-year-old ask when her seizures were going to start. My heart broke! We had a long talk. We do our best to make sure she knows her life and concerns are just as important. We have been sure that she knows the important role she has in her sister’s life as well.
Emma has blossomed, and proven to be one of the biggest providers of help and care! She knows her sister better than anyone. She recognizes when Laura needs help, and provides a comfort to her that no one else can. She has become open to helping to educate others about epilepsy, and how to be a caring sibling. We know we can count on her to help and support all of us. We wish our children would not have to have so much responsibility and concern thrown upon them at such young ages, but they are becoming strong and compassionate people right before our eyes! Laura has realized how much her sister cares for her, and has come to rely on her support. She wants Emma to know how much she supports her, and cares about things in her life as well. They have each other’s backs!
Laura has become open about having epilepsy. She had reached out to other children who have seizures. She wants to show others there is nothing to be embarrassed about. She does not want anyone to feel they have to keep their seizures a secret. She has allowed me to share her story when I go into classrooms and businesses to provide epilepsy education and awareness. We could not be prouder of our girls!
As a family we have become devoted to educating and supporting others. This is not just for those with epilepsy, but those who support and care for them. We don’t want to see anyone get lost in the shuffle! At times, the focus does need to be on the medical concern, but others should not be left to feel lost in the process. We want to help others find a balance, and remember that everyone needs to know and feel they have a place and importance.
If you are the sibling of someone living with epilepsy and would like to share your story, or would like more resources, please reach out to us below.