Monday, January 23, 2017

Call Me The Dragon

Fruit bouquet, with alien
This post has been stewing in my head since yesterday. We spent Rachel's birthday absolutely spoiling the crap out of her, or so I thought. Her birthday lasted about 4 days, what with all the shopping, lunches, dinner, etc. Every now and then I'd do a little adding up of what we'd spent, and cringe a little at the result. Still, at age 22, she doesn't drive, so we've never had that expense, she's not a shoe maven and doesn't spend a lot of money on clothes and frivolous girly things. 

This morning I was talking with my Mom, and she was asking how things went yesterday, and how Rachel had handled all of the attention and excitement. We talked a little bit about this photo, and the delicious fruit bouquet. We giggled about Rachel's taste in t-shirts, and agreed that whatever she likes to wear is just fine with us. 

Then I said out loud what had been in the back of my mind all day yesterday: Life is short, and people who live with epilepsy often have lives that are cut off in their prime. We never know when Rachel might be taken from us, and I intend to enjoy every day I have with her. She's not spoiled, and doesn't take for granted all that we do for her. Rachel is, as ever, our sweet, loving, sunny sweetheart. 

There is no way of knowing how long Rachel will live. Obviously, we hope she will outlive us both, but no matter what we do, which meds she takes, or how well we monitor her, epilepsy could take her life between one breath and the next. That is what terrifies us, and makes us appreciate every day, and worry every time she's out of our sight. 

Overprotective, hell yes. When you have a treasure in your hands, you guard it with your life.

Sunday, January 22, 2017

Happy Birthday, In Moderation

I have a little time to write, but not much, so I'll keep this brief. I wanted to scribble down some of my thoughts on this day, Rachel's 22nd birthday.

As with everything in our life, we have to plan everything we do in advance, and yet be ready to alter or cancel those plans in the event of seizures and anxiety.

Today the plan was to make Rachel her requested birthday breakfast of popeyes (birds in a nest, among other names for it), followed by a bath, and then her morning nap. Then we were going to drive to the Woodburn Company Stores (an outlet mall a little way from us), visit Build A Bear and have some lunch, then return home for bit, and have dinner out at a special place.

So far it's gone pretty much according to plan! Rachel hasn't had a birthday in the last several years that didn't end with a seizure or panic attack. The excitement and over-stimulation tend to tip her right over. 

So, it's now just past 4:30 p.m., we've had our breakfast, early nap, bath, did our shopping (BAB had a 2 for $20 special, so two bears), checked out a few other stores at the mall, had lunch at a very crowded and noisy cafe, came home, Rach was surprised with a fruit bouquet instead of a cake, she played her new Harry Potter Kinect game, and now she, Stewart and Brett are all napping for a bit before we all get ready to go out for dinner. Whew! It has been a busy day for people who don't usually go at this pace.

Rachel has held up very well, so far, but I did suggest the afternoon nap, and I do hope that it serves to bring down the stimulation overload, so that she can enjoy her dinner out, and end the day on a high note. 

Living in E-land means never winging it. That's a recipe for disaster. We live a deliberate life, we don't socialize overmuch, and we keep a routine as much as possible. I have learned to love boredom. Excitement in my home is usually an emergency with Rachel. 

We love our quiet rut.