Wednesday, August 29, 2012

The Dork Lord Returneth

She doesn't update her blog very often, but when she does, it's usually entertaining...

Ninjas Are Random


Monday, August 27, 2012

A Little Heart To Heart

This is going to be just a short follow-up to the last post. I didn't want too much time to pass before recording the conversation Rachel and I had regarding all of the stuff I mentioned in the last post about school, SSDI, and the medical power of attorney.

I sat down with her today to briefly discuss the basics of those things, and lay out the pros and cons of the SSDI filing, as I know them. There are simply too many things that I myself don't understand yet, but I wanted her to know just what was on the table, and how much she's going to be responsible for, in just a short 5 months.

Rachel is not in any way mentally impaired on a normal day. She passes all the school benchmarks, though she has to work harder to get there. Her impairment comes from the seizures themselves, and side effects of medications. She is slightly socially impaired, and rather naive in some ways. In others, she regularly surprises me with her insights. 

What this comes down to is that I've been putting off having this conversation with Rachel, because I was worried about what her reaction would be to the SSDI possibility, and what that would mean for her. I was worried that she would see that as marking her as permanently broken. We do not see our daughter as broken. We see SSDI as a way to help Rachel be independent, in the event that she's not able to hold a steady job. 

Our goals for Rachel's life haven't changed from what they were when she was born: We want her to have every opportunity possible, no matter her level of ability. We hope she'll be able to go on to college, have a fulfilling job, and a loving, stable relationship. Our hangup over asking for help, or trying to be completely self-sufficient, has to be set aside in the quest to do what's best for her. 

So, my little update became a full-fledged post. I guess I had more to get off my chest than I thought.


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. :)


Friday, August 10, 2012

Big Things

After my last update I got very busy picking berries, making jam, managing our household, and then we had visitors from out of the country. Brett's father and stepmother came down from Canada, and we had a few days where we spent every hour we could with them. It was lovely, and then they moved on to the coast, and the cottage they'd rented there.

The morning they left, we got them packed up, and then we drove down to my Mom's for her annual family BBQ. The next day, Monday, was quiet and lovely, but I had a bunch of chores to catch up on, and then Tuesday we all joined Brett's folks at the coast for the night. That brings us to Thursday, when a friend of Rachel's showed up on our porch unexpectedly, and hung out with her for a couple of hours, so we dragged him out with us to do our shopping, lunch, etc.

And now it's Friday again. Now I can see why my fatigue levels are what they are. If this kid complains on the first day of school about having done nothing this summer, I don't know what I'll do.

In the middle of all this activity, I had occasion to help out a long-distance friend with a problem she was having. I got it taken care of, and then moved on to the next thing, but a few days later she thanked me by reaching out to her extended friends, and imploring them to help out with Rachel's dog fund.

As a result of her effort, and a sale of more garlands, in a span of 3 days, we received $730 in new donations! Check out the thermometer. ---->>>> :) The first donation was from the friend I'd helped out, and I cried. Then more started rolling in, and by the time the 4th donation had reached the mailbox, I was a mess. I am so glad to have the people in my life that I do, whether they live near or far, or I have met them in person or not. These aren't just pixels on a screen to me; every one of my friends is real, and I love them.

Jam-making came to an abrupt halt when our visitors arrived, and I'm having a hard time finding motivation to begin again, but I have a bunch of berries to use before they get freezer burn, so I'd best get a move on. Still, this will be a much smaller effort than last year, when I canned almost 200 jars. It's just too much for one gimpy person.

So, as is often the case, I close this entry with gratitude. There is so much good in our life, and even on the bad days, we know we have friends; people who genuinely care, and want us to do well.

Thank you all so much-Kelly