The Older I Get......The Less I Know?

Elise asleep on the floor after having a seizure.

Shortly after we learned that Kelly was pregnant, she received the book "What to Expect When You're Expecting". It was a great book that outlined almost everything she could expect in a "normal" pregnancy, and helped to ward off many of the jitters of being first time parents. About a year and a half after Elise was born we took a class and read several books about parenting with "Love and Logic". It was also a great find for us and gave us some valuable tools to use in providing discipline and structure with Elise, and later Abby, at home.

In late 2009, Elise was diagnosed with leukemia. There are several books about that, but nothing for kids like Elise where her cancer wasn't actually in her blood, but rather her spinal fluid. That was the first time we heard, "This is really rare" and "unusual". That has become the theme of our life. Maybe I will get that put on some personalized tags for the cars this year. Elise getting a brain infection during cancer was "really rare" for someone that did not go through a bone marrow transplant. There were no books about that either. We are educated people. Kelly LOVES to read much more than I do. She has done some really serious research at times and has done some significant reading on some of the various aspects of Elise's life. There are lots of what to expect when your child is (insert name here) books, but not much for kids with Elise's various ailments.

Kelly took the picture above tonight. Elise is sleeping on the floor, with her head in the dog toy basket, after having a seizure and falling over. Unfortunately, this really isn't an uncommon sight in our house. Elise has had a seizure, hit the ground, and fallen asleep in some of the oddest places and positions. While we never laugh when she has a seizure, the places and positions she has ended up in can sometimes be funny. We always check on her after she has a seizure. Sometimes she is ready to bounce right back up and resume her normal busy ways, and sometimes she just needs to be left alone a little bit to rest. Even if it is in the dog toys, or on the dogs pillow, or wedged between the couch and the bookcase. One never knows where you might find her.

As Elise exhibits different behaviors we often think, "we can't be the only people experiencing this!" If there are others, or even so called experts, I wish they would put out a book to help us understand. Over the past couple of years we have gradually come to terms with the fact that there may be no "fixing" some of the things that so greatly impact Elise's development and daily life. But, that hasn't slowed our pursuit to try and understand why she does the things that she does. "What to Expect When Your Child Has a Seizure" doesn't appear to be out there. If it were, it would probably be in a 40 volume set and only 3 pages in 3 of the volumes would pertain to us, or any other family that are dealing with seizures. I guess that is why they might say there aren't really any "textbook cases."

Like most people, when I was growing up I believed I would some day reach the magic age where I would know everything I needed to know. As it turns out, I keep growing older and learning there are more things that I need to learn this year than last! I'm sure I am wiser than I was several years ago, but I sure don't feel like I know any more. As we have taken Elise to see some of the best and brightest doctors in their field, I have also come to realize that education isn't everything either. When some of the most accomplished people say, "I don't know. I haven't seen that before." at least I don't feel quite as incompetent. They aren't writing the books to help us understand either.

I guess it will fall to us to write the book for others. That is one of my 2013 goals. Other than telling some funny stories, some sad stories, some really disgusting stories, and lots of pages of "we don't know why this happens", I'm sure it will be very enlightening. I would love to hear what other people think this book should be about. Feel free to weigh in with your opinion. Be careful though. I might quote you!