Tastes Like High School

Just a little nightcap

In the glass pictured above is butterscotch schnapps, a/k/a buttershots. This is my new favorite nightcap. It’s sweet, mellow and warm, and tastes like those butterscotch discs we all know so well. This is a new treat to me, as I had never tried it until about 3 months ago. At that time, I poured a small amount for my husband to try, and his first response was, “It tastes like high school.” If I had to choose any taste with which to associate high school memories, it would not be butterscotch, but as it happens, Husband and friends would swipe whatever alcohol they could from one of their parents’ liquor cabinets and often it was butterscotch schnapps.

I was enjoying my drink last night, while reflecting on various events of the past week, and sorting them into the rather jumbled containers in my mind. I keep two somewhat active blogs; this one, and another on a different blogging site, which is used to chronicle my daughter’s life with epilepsy. It’s open to everyone in our life, and is a place outside Facebook where I can more freely express the emotions surrounding our journey. I do not feel that it is the place for me to share my political views, except as they would directly impact our daughter and her care. This blog is where I can let it all out; all the fear, all the angst, all the rage, and all the doubt. This is where I feel like my random, messy thoughts can be safely deposited, possibly for future reflection, but mostly just to get them out of my head.

This week’s jumble includes the many home improvement projects we’ve embarked upon, and their associated expenses, new carpet installation, the painting of a living room wall, the notary who is coming to witness the signing of the loan agreement that will pay for all this work, and so much more. The list of work that needs to be done is daunting. But it does need to be done, both for our comfort and safety, and if we hope to ever sell this place. Some of these are structural issues, which can’t be ignored.

Always in the background of my mind are concerns for my daughter. No matter what else is taking place, no matter the urgency of any given situation, her immediate needs take precedence. Any plan we might have for work done on the house, meetings with bankers, phone calls requiring our attention, will be altered, or dropped altogether, if our girl has a seizure or indicates a pending panic attack. Everything else falls away, and she becomes the focus of our energy and attention. If she needs to rest, all other activity either slows to a crawl, or comes to a full stop. If she’s napping in her room, I will make every effort to keep the house quiet, so she can rest well, and hopefully be able to handle some ruckus later in the day.

Is this frustrating, over the top, and annoying? Yup, sometimes. I have things I need to get done, and I want to get to them, and get my list pared down to a reasonable level, but if I try to push her to cope, it will often end poorly. So, I take a few deep breaths, put on my patient face, and work on whatever I can that requires a minimum of noise and movement. When I’m less irritated by life’s circumstances, I remember that she’s a gift, my precious only child, and she didn’t ask for any of this. Her life is predicted to have a shorter span than mine, and I live with a chronic autoimmune disorder. She could be gone between one breath and the next, and there would be no evidence of the cause of death. SUDEP is the boogeyman in our home, and we are ever vigilant. But, I digress.

Husband and I were talking about the work we’ve done so far, and what yet needs to take place, in which order, and when we’ll have the time and resources to get it done. The living room is complete except for some plaster work that needs to be patched, and perhaps the purchase of new drapes. It is currently our favorite room in the house, and has a peaceful, warm vibe to it, somewhat reminiscent of the beach. Warm, sandy tones in the carpet, furniture the color of faded driftwood, and a wall that almost mimics the color of beach grass. I want my home to be a haven, and this room is a good start.

I met my husband just two weeks after graduating from high school. That was almost 34 years ago. We’ve been married almost 30 years now, and I can safely say that there is no way in hell that 18 year old me would have been able to fathom the life we’ve lived, and all the shit we’ve been through. If that cute guy I met had handed me a book of the life we’d have together, would I have read it, laughed, and thrown it back in his face, or would I have accepted the challenge? I’m pretty sure I was stubborn enough, even then, to take up the gauntlet, pick up my sword, and charge into the fray.

Coping…Still

Yarn Therapy

December 30, 2016. Twenty-one days before the inauguration of our new president. I thought that by now I’d have come to terms with the inevitability of a Trump presidency, but that doesn’t seem to be happening. Each day that passes, each new scary cabinet appointment, each new, inflammatory tweet, serves only to instill new fears. I simply cannot find a bright spot in any of this.

Yesterday I took my almost 22-year old daughter to the neurologist, who would love for her to consider having a device installed in her skull, which is hoped to reduce seizure activity by sensing the seizure almost before she does, and stop it before it starts. Awesome, right? Sure, maybe. But first there are extended hospital stays for EEG under video monitoring, opening her skull to do grid placement, so they know where to insert the wires for the device to be most effective, and then follow-up care, including someday needing to replace the power generator for the device. I don’t have to get the bill to know that this treatment is outside our price range. The VNS she already has cost $40,000, of which we paid about $3,000, and that was several years ago. I can only assume that the Neuro Pace is going to run about $60,000, plus all the lead-up testing, etc.

If Mr. Trump does what he promised to do during his campaign, our daughter will no longer be covered under my husband’s insurance plan, and she’ll be put on Medicare, which I very much doubt will want to pay for this surgery. My daughter wants to do it, hoping it will further reduce her seizure count, and finally allow her to be able to get a job, be more social, and change her life for the better. Or, it might not. It’s a very expensive gamble.

We were sent home from the neuro with an armload of information on the device, and we have a lot of homework to do, all while waiting to see what’s going to happen with our insurance coverage. I am not optimistic.

I was conversing with some other e-moms recently, people who mean the world to me, and all of whom totally understand this exact situation because they live it, too. We are all terrified. Not nervous. Not anxious. Not concerned. Terrified, like  shaking, sweaty, sleepless nights, terrified. Our children matter. Their lives have meaning. They are not disposable. We are literally sick to our stomachs with fear about what’s going to happen to our kids if Trump gets his way.

So, because we have these precious people who need us close by, we can’t be as active as we’d like to be in the Resistance. We can’t do the marches, or carry picket signs. We don’t have a lot of time for making phone calls or sending emails to politicians. We’re too busy calling doctors, pharmacies and insurance companies. We can barely marshal our thoughts long enough to carry on a conversation some days. We are surviving, doing what we can to keep our kids as healthy as possible.

We all have our own coping mechanisms, and sometimes those change regularly. We’re accustomed to change, sometimes at a moment’s notice, so our interests and hobbies change regularly, too. My current coping mechanism is crochet, which I learned again just last month. It keeps my hands busy, and keeps me off the computer for hours at a time, which is good for my soul. It might not be paradigm altering, but it can keep me from obsessing over things I can’t change for a little while.

Word Salad, With Nuts

I seem to find myself with multiple blogs, each one slightly different, and intended for unique audiences. This one is mostly for me, I suppose, and definitely doesn’t have a theme.

It’s election day, and I couldn’t be more relieved. I believe Hillary will win, but either way, the whole thing has been so stressful that I’m just glad it’ll be over. I am mourning the loss of President Obama already. We have not appreciated him the way he deserves. I can only hope that history remembers him as fondly as I do.

We’ve just had a really rough couple of days in our house. Our daughter experienced 5 seizures in a 24 hour period, including 3 seizure types. It was scary, messy and disheartening. We see the neuro the first week of December, and I’m afraid we’ll have to make a medication change.

The house is a mess, with dog hair drifts in the corners, and I have no energy to remedy the situation today. I might find the motivation to clean the kitchen, but I’m not holding my breath.

So, there you have it; all the stuff that’s banging around in my head this morning. This afternoon could have a whole new slew of random goodness.

It’s Complicated

I like to think that my life is just not that complicated. After all, I’ve done all the expected things; got married, stayed married (almost 30 years now), worked hard, bought a house, had a kid, yadayadayada. It’s as if I sometimes forget that my average, workaday life really isn’t. I did work hard, at low-paying jobs, at my marriage, at being a good (but not awesome) mom. I did all the right things, and sucky stuff still happened.

At age over-50, I should be planning for retirement, looking forward to the end of my home mortgage, and eye-balling some bad-ass new luxury sports car, right? Apparently not. In my life, my only child, now almost 22, lives at home, can’t work or go to school, and has little motivation to do more than play video games and read manga. No, she’s not lazy, she has epilepsy and a panic disorder. They have robbed her of the type of life we had taken for granted for her.

Because of our daughter’s conditions, I left my job of 17 years, and the modest income it provided, sold my sports car, paid off debt with the proceeds, and am now a SAHM to a grown woman. My husband works up to 60 hours a week, and probably resents me and our daughter for it. He’d rather be playing with his car or fishing, but instead he’s risking a stroke in order to pay the bills, and keep our daughter supplied with the medication that might be keeping her alive.

Alongside the bills, fears, appointments, phone calls and doubts, I have the pleasure of living in one of the most beautiful places in the country. Now and then I get to go outside, take a hike, breathe, center, and return to fight another day.

I’ve attempted blogging, sporadically, and will try to bring the few posts I had over here, but this is going to be a sincere effort to share our life, the realities and difficulties, triumphs and failures. Epilepsy doesn’t just affect the life of the person with the diagnosis, it changes the lives of the people who love them, in dramatic and subtle ways.