Worry

I know that this is self-centered and not necessarily fair, but I want to know what people who have healthy children and good health themselves worry about. Often, I think that our lives would be so simple and so relaxed if Julia were a 'normal' child. There is no doubt that I love this girl thoroughly and with my whole heart and soul...that is not the issue here. I love her for the person she is, and I don't often travel down the road of imagining what she would be like if she didn't have Aicardi Syndrome.


But, the draining stress of worrying about issues both big and small is wearing me down. What to do about balancing seizure control and too many meds (we're not doing very well on either front as Julia's seizures have been in the not completely awful, but not great range while she is still on three different seizure meds), what to do about inclusion at school (my gut feel is that Julia should be spending more meaningful time with her regular ed class, but no one can seem to figure out how to do it), new mystery issues (her teacher pointed out that Julia has not been using her right leg/foot - sure enough, after studying her for the last couple of days, she really is not using her foot and she seems to be using her right hand much less as well - I'm in overdrive coming up with very scary explanations for why this might be happening), working to find a nurse (we were hoping that we would find someone we had no doubts about, but instead we're doing a trial run with someone we're not 100% sure about). All of this is on top of regular doctor appointments, brace fittings, winter illnesses, forms and paperwork and just everyday life. Not to mention, I am really busy at work and can't seem to get caught up.

Breathe in, breathe out. My head knows that I just need to tackle these stuff one step at a time, but some days, I just don't want to deal with it.

On the bright side, my capacity for handling stress in a somewhat healthy way has increased by about 200% since the time Alex was a baby. If only the number of things to worry about had not increased by 250%, I would be one zen woman.

I guess God did not intend for me to be zen. Perhaps he has an inkling that I would turn into a complete couch potato if things got too relaxed. I guess he wants to keep me motivated.

This post has been entirely too much whining, but it's my blog and it felt good to get it off my chest. So, there.