Sept 15: Struggle

TRIGGER WARNING

I have been putting off writing this. I didn't want to open up our lives up completely to anyone, and never promised to.

But I need to (kinda) now, because I am struggling. Major big-time "I am so lost" outta-options struggle.

I am quite ill. I had exploratory surgery this past Friday. They nearly postponed it again because my platelets are still quite low. We discussed the pros and cons, and decided the need to get a diagnosis was greater than waiting for my platelets to come up another 19 points, or the possibility of me bleeding out. Am waiting for results of biopsies.

That is me. In pain. Still bleeding from surgery. Dizzy. Overwhelmed.

On to Weslee. His weight is still plummeting. He won't eat barely at all... not even his fave foods. He gets super angry when I even suggest he grab something. Says he feels out of fuel, and then gets pissed off when I logically explain fuel comes from food. I made him a doc appt for tomorrow; will tell him tomorrow. 

Meanwhile, it is possible that this is his way of self-ending his life. Maybe the constant seizures are taking a toll. Maybe he doesn't want to see me die. Maybe he needs more control over .. anything. Maybe he just doesn't care anymore.

I don't know. 

And I am struggling to not give in to my own demons.

Apr 7: Emotional Hills and Valleys

For the most part, Weslee puts forth a somewhat sunny disposition. His autism makes it difficult to fake, but he sure tries. Most people wouldn't notice but as his mom, I do. Of course, I do.

Most people would look at him and brush off how his emotions are all over the place. Those hills and valleys. I guess they would kinda be right.

Off and on, starting at around age 6 or so, he began having depression and self-ending thoughts, which continued throughout his life. Most often, it was brought on by meds. (I had to hide all sharp things, like knives, for a few years. Ever try to run a farm with nothing sharp enough to cut?!?)

We tried therapists and other professionals, but either he was put on a med that had nasty little side effects, or doled out ridiculous non-helpful advice.

We did finally find a decent therapist a few years ago, but she changed practices which didn't take our insurance.

It is always something isn't it!?

But sometimes, like last night, it really gets to him. 'It', as in 'life'.

He ended the day rather morose. Depressed. He was concerned that one day he will wake up, and find me dead. He dreads that, and thus, always has the last thing he says to me before going to sleep is "I love you". And, yes, I say it back, because, duh, I love my son!

The sparse amount of friends was also on his mind last night. He has made a few online, and has even met one when we were at the Cleveland Clinic last year. But most days, he really feels so alone.  It doesn't help that some of these people he talks with online turn out to be complete bullies.

As much as I want to, I can't tell him to get thicker skin. Not only because his autism makes it nearly impossible, but also because of me. Genetics. I am super strong when it comes to fighting for Weslee but otherwise, I am 'tender-hearted', a term I have been called all of my life. I cry, like, a lot.

My poor boy. Maybe I should try again to find a group where special needs people meet others similar to them.

........

Weslee needs more brain surgery for his seizures.  Please go to his Medical GoFundMe or to our Paypal ... Thank you.