Hey everyone. Today I am going to share a very hard moment I had with my daughter at preschool.
Since her seizures started my daughter lost some of the freedoms she used to have. She had to be in our sight, we were so scared that she would have one and we shouldn’t be there to make sure she was safe, to time it, to comfort her and take care of her when it was over, the list goes on and on.
At home this isn’t too hard. She just had to go with me downstairs, and wasn’t able to go downstairs by herself. She could still play in another room we would just check on her, listen for her, and call out to get every so often to be sure she was okay. At school this is a little difficult.
Her class is upstairs and in the mornings the kids usually go right to their room and start playing while the teachers get things ready for the day, and talk to parents and other teachers. The hard part is that this means sometimes her teacher isn’t upstairs where she wants to be with her friends. So she wasn’t allowed to go upstairs unless a teacher was up there. I know if she were to start having one another child would more than likely come say something was wrong, but that is scary to me.
One morning she had gone upstairs when there was no teacher up there yet, something happened and one of the girls came and said that my daughter had done something and another kid got hurt. Well the comment was made that she wasn’t supposed to be up there. I went to check it out, the other kid was fine he wasn’t hurt, I don’t know what happened but it was some sort of playing accident.
When I got up there my daughter came to tell me what happened, but immediately two other girls made comments to the effect of “she isn’t supposed to be up here anyway”. My daughter immediately started to cry.
So I took her out to talk to her. She said something that I had thought, but never said to her. She simply said “Momma it’s not fair”. Then she started to cry more. I sat there holding her while she cried and went on about how it’s not fair that her other friends get to go and she doesn’t. She wanted to just play with her friends like all the other kids and it’s not fair that she couldn’t.
My heart broke for her, because I completely understood what she meant. I tried my best to explain to her why I didn’t want her up there without a teacher. (She knows she has seizures and she knows what happens when she has one, as best as we can explain to her)
So we sat there, I held her and we both cried. It was a very hard time for her, she is only 5 and no matter how you slice it….She wants to do all the things the other kids do.
She had missed events last summer because she had a seizure, and because following her two weeks of lots of seizures and medication changes she was not herself. This was the first time she ever expressed her feelings about it.
I really didn’t know what to do or say, so I did my best.
It is so hard to let go and give your child this freedom to be out of your sight. My best advice is to talk to your child. Try your best to help them understand, and listen to them. She has slowly, since then, been allowed to go upstairs. I would just go check on her and listen for her.
She is such a social butterfly and of course, a kid. Kids just want to play and be with their friends.
You have to let go and know that it will be okay, but you can explain to them what is going on and your fears.
I have had my moments watching her during and after a seizure thinking that isn’t not fair. But this has changed our lives, lead me to meet a wonderful family dealing with epilepsy, helped me build my faith in God, and helped me to slow down and appreciate the little things. It has not been easy by any means, but it has strengthened me in ways I couldn’t imagine. I pray that it will strengthen my daughter and we as a family and individually will try our best to help others, raise awareness, and raise funds for the epilepsy foundation.
Well,I don’t know what more to say, but I hope this helps you in some way to deal with any issues you may have.
Until next time,
Jennifer