Wednesday, August 22, 2012

In Which She Rambles

This may be a rather stream of consciousness post, I'm not sure yet. Mainly, I just don't know where to start today.

Summer break has been good, but will be over with the first day of school, on Sept. 4th. In a way, I'm ready to get on with it, get it over with, and get this kid graduated. In another way, there is so much about to happen with her that it's sometimes overwhelming, and I just don't know what should be done first.

Rachel will be 18 in January, which means she'll be the one in charge of decisions having to do with school, and her education plans, etc. It also means that we'll have to prepare a medical power of attorney, just in case she's unable to make decisions for herself at some point, and we need to really consider the possibility of SSDI, though that can wait until she's out of school, and we get a better idea of whether she'll be able to maintain a job with her seizures and anxiety issues.

One of the problems we have is that Rachel's seizures seem to always be changing; frequency, type, manifestation, time of day, and so on. Always unpredictable. Just when things seem to be settling into a somewhat predictable rhythm, everything changes, and we're set off balance again.

Just this week, she's developed a new aura, where she feels like she's twisting to the side, and feels dizzy. Her right hand has also started to shake at the beginning of some seizures, which is completely new. Rachel has a left temporal focus, so right-sided movement is to be considered within the norm, but anything new makes me nervous.

Rach and I are in the habit of taking walks in the downtown park on a regular basis, and feeding the squirrels. The other day we decided to walk up the Derby track there, and we were making good time, and were almost at the top, when Rach stopped, saying it was hard to breathe. Usually I'm winded first, so I was surprised, and then I noticed she was blank in the eyes, so I got her steered over to the curb, and sat her down just before she began to cry, and the seizure was full-on. This was the first time I hadn't brought my entire purse (with meds, magnet, and at least tissues), so had nothing to wipe up drool with, and we both ended up looking as though we'd spilled water all over ourselves. Fortunately, she was able to walk again after about 10 minutes, so we came right home, and Rach had a long nap.

So far this month there have been 6 seizures, whereas last month there was 1. This in itself has become something of a pattern, but not one we can ever count on, of course. About the time we do, everything could change.

On the upside, we've received another $150 in donations! Every bit brings us that much closer to Rachel's dog, and I can't tell you how much having that help will mean to Rachel as she moves forward to adulthood, and independence. :)



  1. Sigh. Much heavy stuff ahead, but I admire you for acknowledging these decisions have to be made, and preparing for them.

    Seizures suck, what more can I say? Other than how happy I am to see you moving forward towards the goal and Rachel's dog.

    Mrs Fringe

  2. Thanks, Mrs. F!:)

    Acknowledging the steps ahead doesn't get them done, unfortunately, but until she's actually 18 there's not much we can do.