The hardest part of the girls having epilepsy is the worry. I don't worry about the life they will lead or having limits in the future. The "perk" about diagnosing early is that they will never know any different. Also, we are determined to ensure that they live a life as normal as possible and never feel like they have to miss out on something because of this. No, I worry about every day, every movement, every noise. Did they get their medicine? Are they on the right dose? Is the medicine the right thing? Even more, I worry about the root cause.
Unfortunately, as of right now, we have no answers for their epilepsy. Neither side of the family has a history or seizures or epilepsy. Neither of the girls have anything going on in their brains that would disrupt the "flow" causing the seizures. And because I have a habit of over-thinking, analyzing and worrying, I can't stop thinking about their birth. They were 6 weeks early and did not need any oxygen. Did not giving them oxygen cause the epilepsy? Should they have gotten it? I know that I can't go back and get a do-over or any answers. I also know that I have to trust the wonderful NICU doctors and nurses at the hospital. But hey, I am a mom. They are my babies. I worry that I did something wrong that caused this. If only I could have left them cooking for longer, maybe they wouldn't have to live with this.
A and L have what is called "drop attacks." So, when I say that they have seizures, it is not what you see on t.v. The fall to the ground and shake. A's have always been really slight and L's a little more dramatic. But, many people probably wouldn't have noticed them. Shot, for awhile I didn't recognize them as seizures. Because of this, I feel like we are very sensitive to every movement they make. If they had the stereotypical seizure, maybe it wouldn't be so bad. Maybe I wouldn't be second guessing every movement they make. As it is now, every time I see them move their head or stare into space I wonder "was that a seizure?"
And oh my goodness, when they are sleeping, forget about it! I can hear them on the monitor and I hear them move or make a whimper. Immediately I freeze and listen. Is everything o.k.? I know in my head that they are just tossing and turning. Tell that to my heart and my irrational side.
Right now, we are just kinda stuck in limbo with their epilepsy. They continue to take the medication twice-a-day. That in itself is an adventure. They continue to be, what we think, seizure free. We will continue on with the medication until the Spring of 2012 (that's so far away!) then wean them off and see what happens. That is scary.
These are my babies. I want to make sure I can give them the best of everything and give them the best life possible. If could take this away from them, I would. But it is part of who they are. I may not always be the best mom and I may not always make the decisions that others may think I should, but I am their mom. I will always do my best for them.