Thursday, September 12, 2013

Sufficient unto the day

Today's brain stew includes:

Volunteer duties
A family whose small child had her first seizure
A grandmother with cancer
Trying to find ways to get my kid moving
A chore list a mile long, and no motivation
An important friendship on the back burner

And still...gratitude, for:

The fuzzy, warm dog on my feet
Appliances that work
Bills being paid
Vehicles that start the first time
Coffee

Friday, August 30, 2013

Want In One Hand...

I Want:

More time to read for fun.
Less time spent on worry.

More faith in Rachel's ability to take care of herself.
Fewer medical bills.

More opportunities for alone time with my husband.
For less of the time we have together to be spent talking about kid stuff.

To find a way for Rachel to take fewer meds.
To have the support of her doctors in finding those ways.

For Rachel to come out from under the med haze, see what a gift she has in her boyfriend, and fully be able to open herself to love and passion.

To be able to go back to school, and be able to do it knowing that Rachel is independent, and not need me for everything.

To have more energy for...everything; for my marriage, for my family, for all of the volunteer things I'd like to do.

To win a ginormous lottery, so I could stop worrying over every bill, make sure my family has everything they need, send all the kids to school, and help out all of the friends who have been so generous with us over the years. 

Not exactly a modest list, is it?




Tuesday, August 27, 2013

Loose Ends...Kinda

When Rachel graduated from high school in June, we were all proud, and very relieved to not have to worry about school anymore for awhile. She had decided to take a gap year, at least, and just rest, and work with her dog, and spend time with her boyfriend, and just...be.

We had a wonderful summer, spending time at the beach, and at the river, and just hanging out at home, or cruising garage sales on the weekends. Rachel's boyfriend Jonah finished boot camp, and moved on to AIT in VA.

Now here we are, August is almost over, the rain is returning, days are cooling off, leaves are turning, and we're not preparing for school. It's weird. Every year, for 13 years, we did the school prep thing, and this year we're not. Instead we're working with Rachel on life skills, and trying to get her more motivated to do things for herself.

Yes, we over-compensated in a big way, we enabled her to be dependent on us for everything, and we robbed her of the experience of doing things for herself, and didn't expect nearly enough from her. Dr. Phil would be horrified. We can't really make up for that now, but we're working on it. Rachel now fills her own med tray each week, has a different chore that she's responsible for each day of the week, in addition to her daily chores of emptying the dishwasher and feeding/caring for her dog.

We do have some stuff coming up this fall: We volunteered to man a table for the Epilepsy Foundation NW on Sept. 12, for the Oregon employees season of giving campaign. Then we're working on raising funds for Disneyland's first ever Epilepsy Awareness Day on Nov 7th. We've raised about 1/3 of what we need for that trip, and are working on earning more with Bonanza and ebay sales. Our friends have been a wonderful support, and are donating and buying items, and that helps so much.

We're in the middle of a medication wean, with a look toward reducing one of Rachel's AEDs, and potentially being able to try CBD therapy in the future. So many considerations, not the least of which is finances. If it's not covered by insurance, it might not be doable.

I feel a stream of consciousness post coming on, but not right now. It's still bubbling and frothing in my head, and isn't anywhere close to coherent.

Monday, August 26, 2013

Random Thoughts

Doing tons of research of efficacy of CBD for seizure/anxiety management, meeting people in the community, reading blogs, articles, research papers...

Not terribly concerned about what the general public thinks is right or wrong, but rather concerned about doctor response, and most concerned about finances.

So much to consider. Just wanting to do what is best for R, and give her the best future possible, all while not going broke, or getting arrested trying to take meds over state lines.

Why is this so hard?