It is always hard as a parent when your child is diagnosed with something difficult. We want their world to remain innocent for as long as possible. We don't want them to ponder their death, we want them to enjoy life with that limitless possibility outlook.
So when we are cruising along in life and we hear that there is something significantly bad going on in the health of our children it is like a punch to the gut or a glass of freezing cold ice water dumped on your head during a really good dream. So it is no wonder we don't always handle it the best. Now that I am a couple of years out from hearing my daughter is epileptic I realize I should have read a do and don't list so I wouldn't have to undo damage.
So here is my list of do's and dont's when you hear your child has epilepsy:
Tell them what is going on. This is one I did do right, but I was shocked at how many people asked me if Alina knew she was having seizures. To clarify Alina does not have Grand Mal seizures, she has Absence seizures. So it would be harder for her to know, but we felt knowledge was power in this case. At least this way she had an explanation as to why people warped across the room or she missed part of the lesson in school.
Blame Yourself!! This is an important one. There's always the "what did I eat while I was pregnant syndrome", but this goes beyond that. I felt so guilty at all the times I had yelled at my daughter because she wasn't responding to me. I thought she was just blowing me off. Her teacher is the one who picked up on something being very wrong, but neither of us once thought seizures. I replayed the video's of my own bad behavior incessantly. Realistically, though I tend to be a know-it-all, I really don't. I had no experience and therefore no way to know that there was even such a type of seizure. We were told by several medical professionals that she was lucky her teacher and I had a good working relationship. Many of these kids go years with no diagnosis, are labeled the goof off and by the time the truth is discovered they are so far behind it is insurmountable. So I had to realize it wasn't my fault she had the seizures but it was my fault we found it out and that was a good thing.
Reassure, Reassure, Reassure!!! Oh my, I think my problem here was that I needed reassuring too. I did not do enough of this. I left her dangling while I whined and researched. I think it might even be said I felt sorry for myself and here she was needing to know it was going to be ok. The thing was she never outwardly stated she needed to know it would be ok. Izabella would have. Alina is an internal processor so she let it eat at her. And boy did it eat. So, you may not know that it's going to be ok, but they need to know that it will be. I'm not saying you should lie, but remember the day before they were skipping through life only vaguely aware there was bad stuff out there. There world and the world of your other children just crashed down as they process the realization that even kids have bad things happen to them. I mean come on how many 20 year olds have that concept down? So let them know it will be ok, because no matter what it will. I believe in Jesus and His promises and if that is true then we know it will all be okay by any definition.
Make their entire identity about their "disease." Your child does not want to be introduced as Alina the epileptic. I never told Alina's friends, she did that. However, she then took that on as her identity. What that did was make her feel different and isolated. I remember her crying that none of her friends had to take medicine and she was so alone. I pointed out that I take medicine, and her brother does. I also pointed out that she really didn't know if other kids took medicine or not, maybe they just didn't talk about it. Then this summer I stumbled upon a book called Becky the Brave by Laurie Lears. I found it randomly at the library. It is a story about a little girl with epilepsy whose little sister thought she was the bravest girl. But Becky was embarrassed by her seizures. That is until her younger sister reminds Becky and her friends that seizures is just one part of Becky, there are lots of other great things about Becky that have nothing to do with epilepsy. This book spoke to Alina and she finally realized that it is just one part of her, it isn't her whole story.
I am sure there are more to add to this list, but I will end with Do always love your children and they will flourish!!
Thursday, December 5, 2013
I have often wondered why we as a culture do so much in buying, but that hasn't stopped me from participating. I think for my family both growing up and current, there two times a year when you got presents, Birthday and Christmas. Rarely have we gone to the store and have I bought my kids a toy to appease them. (There have a few exceptions I must admit). Typically though, if they have wanted something outside of those times they have had to save their allowance.
So, I guess for me that is why I want those gifts to be special is they are infrequent. But as I looked around my house this fall I realized truly our kids have no wants...the toy cabinet is bursting, they have pretty full wardrobes and we have a working tv.
My oldest did come up with a list and as she is becoming more fashion conscious hers is full of clothes. But it was my Alina who stole my breath. You see we were at the mall and of course there was Santa. She bubbled over with excitement to see him. We waited our turn and she went up and told him her hearts desire. I wasn't in listening range.
Later I asked her what she wanted Santa to bring her and her simple answer made me smile. She said, "I would like a diary with a lock. Sometimes I have thoughts in my head that I need to get out but I don't really want anyone else to read them. I've been telling those to one person, but that's a lot for her to maintain my secrets, so I'd like to be able to write them down and lock it away."
We have always maintained the relationship that Jesus and Santa have (you know Santa helps Jesus out). I had a friend tell me that she still believes in Santa because he is like magic and we all need a little magic in our lives. Does she think there are going to be unexplained gifts under the tree? No, but it's that sense of wonder we lose as we "grow up." I am trying to let my children have that sense of wonder as long as they can. So Santa will likely find a way to give little Alina a diary with a lock.