Weary.

I am so very, very tired. I have not been able to sleep past about 3:30 a.m. lately, except a precious time or two in the last month. This means I'm exhausted by early evening, and barely able to function, to be with the boys, to be who and what they need.

I am sad sometimes. I know part of it is "that time of the month" but part of it is having no clue how to get Aaron educated. He doesn't want to do homebound services, but he misses so much, and he doesn't want to work on school work when he DOES feel good. I'm at my wit's end. I value education but I don't want him to be even more miserable than he already is.

I was texting with a guy I met online the other day, and I said, "I'm ok for a Tuesday." And he said something about realizing how much he needed a month of not knowing what day of the week it was. I said, "I don't think I've ever had that." And his responses was, "Oh sweetheart, you haven't lived." Combined with the rather condescending and too-familiar "sweetheart," I wasn't impressed. I have lived. I have had a much different life than a lot of people. I haven't traveled a lot. I haven't experienced a ton of different things. I haven't been able to - money, time, energy - these things are tied up in caring for a human who I brought into this world with a disability. He's my responsibility. He has been my adventure. And although so many people probably look at my life with pity and sympathy, they don't know that for the most part, I am ok with it. I have traveled for him. I know more about the medical system than a lot of people. I've met people who care, people who struggle like us, people who bolster my heart with the level of kindness and compassion that the guy who spends a month on the beach every year may never get to know.

My life isn't full of excitement and being on the go and photographs of my latest stunt. And I don't want it to be. I want it to have meaning. I want to love and be loved. I want to have fun sometimes, but I just don't need it to be all the time.

And besides...I'm too tired for that anyway.

P.S. I still miss him, and think about him, and look for him every day.

Back to normal

It's Sunday evening, and my boys will be home in about 45 minutes. They've been at their dad's since Wednesday night; I saw them briefly on Thanksgiving for dinner, but that was it. I haven't done much, to be honest, with my 4 days off work. I have spent a lot of time binging Netflix. Chatted with a few fellas on Tinder and OKC. Richard called a couple of nights ago; we texted briefly yesterday and he was going to call in the afternoon, but I never heard from him. Way to stand out, dude. I'm not mad, just...slightly disappointed he's like that. But whatever. Chris S.   was very communicative, and look how THAT turned out.

Anyway, I'm nervous about life getting back to normal. For five days (they didn't have school Wednesday) I haven't worried about Aaron and seizures and missing school. Or Quent and finishing up senior year, and hoping his car keeps working. But tomorrow it all returns, and I'm anxious. I don't know how to help Aaron, or what we'll do. I think we have a meeting for homebound services on Friday afternoon, but I'm not even sure that will be the answer.

I have missed them dearly - I can't wait for my house to be full again - but I'd be lying if I claimed to not be anxious.

Into the fire

Literally.

My son came home from his weekend camping with scouts, and let me know he'd had 2 seizures. The first was because he tripped over a stump in the dark - not fun, but ok. The second, he was throwing a log on the camp fire, and had a seizure. He nearly fell into the fire, but his friend Alex caught him. He told me this pretty matter-of-factly.

But for me there was nothing routine about it. I keep picturing him falling into the fire, his face burning, and being scarred for the rest of his life - and maybe blind, too. It terrifies me. All the risks of accident do. Even though the tree-stump tripping ended up ok, he could easily hit his head in just the right way to cause serious damage or even death.

I'm still so very scared for him, in addition to all the other stress - such as my ex kicking his daughter out of his house, and calling her a see-you-next-Tuesday. I mean, who the fuck DOES that?

Too much

I know, I haven't written here in a long time. I haven't needed to. But my main blog site is down, and my relationship one is, well, I'm taking a break from dating.

Today has been so, so hard.

I started the day crying on my drive to work. Aaron couldn't go to school again; he woke up weak and twitchy. He'd woken in the night from a seizure. He hasn't been to school a full day since October 17.  A whole month. I just don't know what to do. I feel like the options we have from school aren't at all helpful.

Then work was just crazy busy. Stressful situations and just nonstop things going on. I'm definitely earning my raise.

And of course, I'm lonely and I still miss Chris, the last man that I dated. I have seen him in his truck several times this week on my way home from work (god how I wish he was on a different route). I know I'm not in a good place to meet anyone right now. I've gained weight, I'm a bit anxious and depressed, and my personal life is just complicated and messy. I cannot ask anyone to take that on. So I am just not even trying.

And tonight, my stepdaughter lost her dad for a few hours, and when she found him, he was angry and belligerent. He wants to die, and he got physical with his roommate. Of course I am sure he was not nice to her, either, because that's how he is even when he's NOT sick and dealing with side effects of chemo.

And I am in SO much physical pain from the bad fall I had the other night...I bruised both knees badly, but fucked up my shoulder blade something awful - my right shoulder blade, of course. Because I couldn't mess up my non-dominant arm! 

I just want things to be easy. Just for awhile, for god's sake. And to not feel so alone. PLEASE.

Not today.

"Just want to say I'm thinking of you. I love you," read the text from me to my very best friend. What I felt but didn't say was, "And please don't let her die today."

Her daughter the one with a very rare, very advanced cancer, went to the ER tonight. I don't yet know why, what's wrong.

But it's my birthday today. Not a big special one - just turning 43. And I'm not big on birthdays, but I don't want my girl to lose her kid on my birthday. I don't want her to lose her ANY day, but especially not today.

So please, please don't let her die today.

Lovely mistake

He was a mistake, but I loved him, and when I think about him too much, sometimes I still cry.

He was a mistake, but he was my husband.

And I loved him.

Dejected

Hope...it feels very far away.

2 a.m., and I can't sleep. My broken right elbow is throbbing, despite pain meds. I'm worried about my stupid car, whose engine is apparently in need of replacement after only 66k miles, and on which I still owe several thousand dollars. I am facing immense medical bills for the workup for my son's possible brain surgery. I already have a $1300 bill for the ambulance for Joey that didn't even transport him anywhere.

My ex is driving me crazy with asking advice on taking a job with my company - I can't make these decisions for him. All the sudden he feels he has to consider our sick son when making career decisions - as if I haven't been doing that for the last 10 years.

My oldest still isn't working. He's nearly 22 and all he does is play video games and eat. Sometimes goes to see friends. He has no desire for anything else. He doesn't seem to be depressed anymore. He's just content to live off me. Of course since he totaled his car, he has no way to get to a job.

I'm worried that we will do all these tests and travel and surgery for Aaron - cut open his brain in Denver! - and that he will still have seizures. And that it might change his personality. And that all the time and money I am spending to fix this will be worthless.

Nothing feels right, and I'm alone dealing with it all. I don't know how much longer I can do this. I wish someone would save me. Maybe I'm just not worth saving.