Because of Bella’s side effects of the seizures, side effects of her medications, and side effects of whatever it is that may cause her epilepsy, she has learning delays. I did not know about Early Childhood Education at all. I did not know that she could qualify for a free preschool through the school district. As soon as I learned about it, I got her tested, and she started classes when she was about four; one year later than she could have.
Bella is the baby of the family. By the time she turned four, I had seen hundreds, if not thousands of seizures. Although she only hit her head one time, it made me nervous. I carried her often. Once her seizures were controlled, I still carried her. This was partly out of habit, and partly because she would cry if I didn’t.
The teacher in her Early Childhood class did not like that I carried her. She would tell me, “she can walk.” It took months, but I finally did comply, and Bella started walking into the school on her own two feet. This turning point was very difficult for me.
I am her protector. I want to hold her in my arms, and I want to breathe for her if she stops. Every single time she has been in ICU, my breathing has slowed. I think of pretty much nothing but hold my breath just to see her breathe normally with her eyes open and alert once more.
During her IEP meetings, I often told her teachers that I know she won’t be a rocket scientist. Of course, I want her to continue learning, and moving forward academically. My main concern is that she is happy, content – and free of seizures.
Bella is 20 years old now. She is still spoiled. Her dad, her sisters, and I still do too much for her. I often ask if we did/do too much. I wonder if I were to go back in time to when she was just four if I would change anything. I could have been more strict. I could have shown more love by teaching more independence. But it seems that every time we made any headway with her gaining self-confidence and independence, she would begin having uncontrolled seizures, and we would take a few steps backwards.
I want her to live a happy life. I would do anything to give her happiness. I would do anything to let her be “normal.” I do my best to help keep her seizures at bay. When she has breakthroughs, our world as we know it gets put on hold, and she is catered to. There is a balance in there somewhere. We continually do our best to be steadfast, caring parents without doing too much for her. Sometimes she takes advantageous of us, and sometimes she tells us to take a step back. It is an ever-growing experiment. I think I have learned that I cannot make her happy, but must give her the space so that she can find that happiness.