Breathe, Baby

Life seems to have been extra busy lately, but this week, in particular, has been downright hectic.

Rachel had an appt. with her neuro on Monday, in Portland, mid-morning, which meant no nap until we'd returned home, and both of us managing the stress that comes along with the hellish traffic in that particular municipality. We're all Oregonians here, but some of us don't seem to handle driving in rain all that well, and traffic was suffering more than usual.

Tuesday we drove south to Eugene, and my rheumatologist, where I thought I had an appt. at noon. I was wrong. It's supposed to be next week, but they weren't very busy and worked me in, bless their hearts, which included getting a steroid injection in a very unhappy finger joint. So, two days of long drives and doctor visits, in the pouring rain. 

Rachel reads with elementary school kids on Weds. and Friday mornings, so Weds. was reading, we had to do a grocery run in the afternoon, and then we had a rep. for a carpet installer come out Thursday evening to measure the house for carpet and linoleum. That meant some extra clean-up had to be done beforehand. Today is Friday, so more reading, and tomorrow I'm driving south again, to help my folks set up wi-fi in their new rental. Rachel will stay home with Dad.

This evening Rachel started having a seizure, and it pretty quickly became apparent that it was going to be a bigger event than is customary for her. It started as a pretty standard complex partial, but then she stiffened totally, her eyes rolled right, and her head turned. She held her breath, and just as her lips began to turn blue, she took a shallow breath. Brett and I were both quietly urging her to "breathe, baby, just breathe." 

I ran to the fridge, and got a syringe with her high-THC sublingual rescue oil, and squeezed a small amount into her cheek. Soon Rachel was breathing a little better, and relaxed. Her oxygen level came back up, but she was shivering hard, and was really out of it for several minutes. Stewie hovered nearby, worrying, and occasionally giving her hand a lick.

Finally, Rachel fell into a more natural sleep, for about 10 minutes, waking long enough to take her evening meds, use the bathroom, get on jammies, and crawl into bed. She asked me to just sit on the edge of her bed for a few minutes, while she worked on calming herself, as her heart was still beating pretty hard, and she was having some anxiety. I was happy to do that, of course, and would have sat there all night, if she needed me, but she told me I could go, so I kissed her head, turned out the light, and came back to the living room, and the monitor, so I could listen to her breathe.

Waiting For Rachel

Stewie impatiently waits for Rachel to return

Last year, when Rachel was still up to taking college classes, I started taking random pictures while waiting for her to return from class. I shared some on my Instagram, and some on our dog blog (link to the right --->). The hashtag was #waitingforrachel.

I spend a lot of time waiting for Rachel. She can't drive due to the risk of seizure, or even panic attacks, and she has no desire to do so. She's working on being more independent, and spending time doing fun things without me, but I still have to be nearby, at least close enough to respond within just a few minutes, in case of emergency. Generally, this means sitting in my car, reading my Nook, or taking a walk. Sometimes I have Stewie with me, which is nice for the walks, but many times it's just me, sitting there and trying to focus on reading, while trying not to panic every time I hear a siren.

Lately there have been more times when I'll drop her off somewhere, and then run off to do a small errand nearby, but I'm never gone more than 15 minutes, and the whole time I'm away, I'm dreading and anticipating the ringing of my phone. So far, so good. We haven't had any major incidents while I've been parked outside, or even off-site. *fingers crossed*

Rachel's most recent interest is in volunteering with the school district's SMART (start making a reader today) program. She'll be reading with kindergarteners twice a week. She's done two sessions now, and really seems to love it. Each session is 90 minutes, and Rach has 3 kids that she reads with individually in that time. The first day I was a mess. The school at which she volunteers is close to downtown and the hospital. I should have taken that into account when choosing schools, but she'd worked at this school before, so it seemed the best option at the time. Every time I heard a siren, I chanted to myself "please, don't come closer." 

After the first day, Rachel offered to text me between each child's session, so that I would be more at ease. I was incredibly grateful for her empathy, and that she offered without me asking. PTSD is a horrible thing, and mine seems pretty firmly centered on sirens, tonic-clonic seizures, and hospital smells. Weird, right? ;)

I don't think I'm unique in my need to be close by when my neuro-atypical young adult is off on her own. She has Stewart, a body alarm that he can pull, a watch that can detect and report a tonic-clonic seizure, and an ID tag that has a QR code which will take responders to a web page with all her pertinent info. The poor kid is bogged down with all the safety gear I can get her to wear, and I still wait nearby. It's quite likely I'd benefit from some good therapy, but those funds, and the time for the appointments, are currently allotted to Rachel's need for psych care. 

I envy those parents who, even though they worry, can let their young adults walk out the door, and be gone for hours, without the outright fear of a random storm in their child's brain causing them harm. Who don't have the concern that in the midst of a seizure their child may be confronted by police, and harmed because they can't respond to commands. Who have the normal expectations of sending their adult child out into the world to get jobs, make friends, and go on to live an average life. We have no idea what will happen for Rachel next, or whether she'll ever be able to live on her own. 

A Day In The E-Life

Rachel was supposed to begin her volunteer work with the SMART program last week, but she had the seizure day from hell, and she was sick, so we didn't want her to a) spread the virus to other volunteers and children, or b) become so rundown that it would take longer for her to recover.

So, tomorrow morning will be Rachel's first day helping kids read. She asked me to please keep Stewie for her, at least on this first day, so that she can both focus on her duties, and make sure that nobody is allergic to dogs before having him there. I'm okay with that, and it shows that she's using good judgement and working out what to do.

It's now been a week since the last seizure. Rachel has been sort of fussy today, and is extra tired. I'm hoping it's just that she's still recovering from the virus, and the weather is lousy, but I'm afraid that she may be kindling up some seizure activity. Mornings are usually "safe" as far as being able to avoid seizures, so I'm not too worried about tomorrow, as her reading time begins at 9:30, and is only 90 minutes long. Still, she'll be more than ready for a nap by the time she's done.

Naps are just a part of the package around here. Rach can occasionally go a full day without one, but that's pretty rare, and this last week she's been having an extra nap in the afternoon every few days. This afternoon she even asked to take a hot shower-bath, which is something so rare that it was shocking. Usually I have to remind her to do the kind of self-care that most of us just do automatically. Afterward, she climbed into bed for a second nap.

Our lives revolve around Rachel's seizures and energy levels. It can be frustrating, but we learned long ago that it does no good to fight it. Plans get changed sometimes on a moment's notice, and we never leave home without emergency medications, a vape pen, and a towel, just in case of seizures. These things have become so common now, that it's just not something we think about much. It's like grabbing my purse and jacket before walking out the door.

Just a few more aspects of life in e-land.