Just sad today...

I tried to write an upbeat post, but gave up halfway through. I'm not in the state of mind. I haven't been in the state of mind to write anything good, happy, etc. in so long. I'm sorry about that. I sometimes wonder how I'm going to get out of this pit I find myself in. It's not depression as such. I'm sure medication would help, but it's not that I'm depressed about what's happening. It's just that I'm so so sad. Last week was a good week. When we heard that Boeboe doesn't have VCFS. I was really happy. And for the rest of that week. The kids were at home on school break, and I got to spend loads of time with them. I pushed all my worries aside and tried to live in the moment. It worked well. Until this week, when the realities of everything came crashing down onto me again. With Boeboe, you just can't escape from the realities for long. You see them every day. You live them every day. You can ignore, and when she herself is excited and happy and having a ball while on holiday, things do tend to mellow a bit. But as soon as she was back in school, she's back to her old/normal self and I just can't ignore it and just be happy. When your daughter screams and screams and screams at you, until you find yourselve trying to drown her voice out by screaming back at her, so that she would JUST STOP FOR ONE MINUTE, then you just can't ignore it and be your happy self anymore.

It's so difficult. Life with Boeboe. I feel horrible writing this down. But I need people to understand. To get it. Tonight, the kids went to sit in the sittingroom, while me and hubby were still busy in the kitchen. We were on our way to join them. Like almost always, we heard Boeboe yell at one of the boys. She was angry because I put Peanut down next to Monkeyman. Monkeyman was sitting on the middle seat of the couch. Which meant that when Boeboe came in, her only choice was next to Monkeyman, and not both of them, or at the very least, on Peanut's other side. So like always, her first reaction was to scream how unfair and wrong and awful and crap everyone and everything is to her. Like always, she kept on screaming until she got her wish, which was for Monkeyman to move up so that she could sit in the middle.

30 Minutes later she was screaming at me and her daddy, because we said it was bedtime, and she'll have to finish what she was busy with (something arty) the next day. Then she got ready for bed, and after 20 minutes came to ask us if she can now finish her arty thing. We told her no, and had to listen to her screaming at us some more. At the top of her lungs. About 30 minutes later, when she was supposed to be asleep, she heard me giving a dead bee to Mr N (Boeboe is a bit allergic, and I was unable to chase it out of the car, so I killed it. Sniff sniff. I really didn't want to). Anyway, Mr N wanted me to take it home so that he could have a look at it under his microscope. So I called him to gave it to him, since it was lying in my kitchen since we got home from school. Boeboe heard me and got out of bed, because she too wanted to see the bee. And then was upset when I said she better get back into bed, Mr N can show her the bee tomorrow. It's not going anywhere.

That's all been about in the space of 2 hours. Earlier today, she screamed at Mr N because they were playing together outside, and she thought he took one of her sponge arrows (turned out it was his, as he thought). She believed it was hers, and screamed and yelled at him. Then, he did something in the game she didn't approve of, and again yelled some more at him. Then it was Monkeyman's turn, because he also didn't play like she understood the game to be.

Anyway, I'm rambling. I just want to illustrate how a "normal" day in our lives look. It's not sibling rivalry. We have that too. That's normal. I have to referee and ask them to compromise, etc. This is something else. This is Boeboe letting an onslaught of raw anger and frustration wash over anyone in her path. It's not strange for her. It's not abnormal for her (sure, it's abnormal behaviour). It's not even worse than yesterday or the day before. It was a pretty average day. Actually, it was a better than average day. Most of them are worse than this. I just don't complain much about it, because throughout the years people's reactions were:

"Oh, I know, geesh, these tantrums are rough hey? My daughter would go on and on, over nothing!".
Or "My youngest is exactly the same! He would just scream his head off!"
Or "You're lucky, my daughter would scream so much, she'd turn blue!!"
Or "I'm so sorry you're going through that. Isn't it because she doesn't have the capability to express herself in words? Maybe hold her tightly until she feels safe and secure."
Or "Mine does that as well! She'll scream like a banshee, and refuse to even listen to me!"
etc.

None of it was wrong, of course not. It was their experiences. I was just getting very disheartened, tired and lonely because I couldn't make anyone (bar Boeboe's psychologist, and close family members who witnessed it) understand that my tantrumming daughter is really the extreme.

 It's NOT the same as your normal, typical daughter. It's NOT the same as your normal, typical son. I wish it was. I so wish it was. Look, it's not as bad anymore as when she was 4. Or 6. She's 10 now, and it's MUCH better. Especially since she was put on the psychotic medication. Much better. I felt guilty, in fact, when I marvelled at how much better life was for me, medicating my daughter. I felt awful, to be honest. Still, it's not over and done with. It's not gone. We still deal with her screaming and yelling and crying on a DAILY basis. Yes, at age 10.

I found this on the internet a few days ago (I hope it's big enough to be read):

I believe this must be a chart for autistic children. I always assumed a tantrum and a meltdown is the same thing. I guess I was wrong. So maybe part of it all is the fact that I called Boeboe's episodes tantrums. While according to this chart, it was meltdowns. Up until a certain age (I can't precisely recall when, but at least age 6), I would've crossed all 5 of those. Now, I'd sometimes cross all of them, but not anymore all the time. She'll sometimes now consider her own safety. She doesn't bang her head on the ground anymore. She also would try to communicate her needs. If you count her screaming it at the top of her lungs communicating. She can also calm down much better now, sometimes. So yes, she had classic meltdowns, it seems. At least until age 6 or so. I wish I knew this then. Life might've been different for all of us.

So does this mean she has autism? No, I don't believe so. Accordingly to the psychiatrist and psychologist, Boeboe has autistic traits. But she doesn't fulfill the criteria for autism. I'm grateful for that.

So why am I sad today? Because we're still sitting with whatever we're sitting with. I marvel at the fact that people seem to think it's all over. I sometimes try to imagine how other people would react to hear that their child is at the very least, bipolar with psychosis. I try to imagine how many tears they would spill. How many days it would take them before they're "fine" again. How many sleepless nights they'd have. How many mornings they would struggle to get out of bed, because it's dragging you down. How long is it normal to mourn before you can go on?

I read a father's story of his fight to get his baby diagnosed with what was wrong (a chromosomal disorder). He described it so well. The heartache, the way your life come to a standstill while it still moves on for the rest of the world around you. How tired and disheartening and difficult it is. How you can't relate to other people any more. How you withdraw socially. How you don't visit friends or family anymore. How you don't invite people over anymore. How lonely the road is.

It took them 3 months. THREE MONTHS!

I've been at this for 10 years. Ten very very long YEARS. Fighting over and over and over again for my daughter. Always getting new rocks in the road I have to move before we can go on. Always having more and more worries piled onto our plates. Having to just accept it and move on. Well, I can't. This time, I can't. I'm too sad. Too done for. Too wrought out. I'm at the end of my tether, and with no end in sight, I feel like crumbling down and just giving up trying to be strong. To cry and cry all day every day. Without wondering what other people will think of me. Without worrying what the kids would do with a crying mommy. Without thinking what my friends or family would say. I just want to break down and BE HUMAN.

I won't do it. I've been raised by a very stoic, very private, VERY strong woman. It's ingrained into me that you just bite down and go on. Yes, other people would think you're fine. They won't realise how difficult things really are for you. But that's really what it's about, isn't it? Don't show weakness. Don't admit to having a really, really hard time. Don't admit that for 6 months, you could barely hold a normal conversation anymore. That for 6 months, you've been angry. So very, very angry. At everything and everyone. That for 6 months, you can't focus on any projects anymore. Anything good. That you're just going through the motions of living. You smile when it's expected. Sometimes you even laugh a geniune laugh. Sometimes you can even sound normal for a whole day. But later that evening, it will catch up with you. And all you'd be able to think, is:

My daughter is Bipolar (or worse... I can't even get myself to write that "worse" down here. I'm sure most of you have guessed already. It's that "worse" that occupies my thoughts 24/7).
My daughter is psychotic.
My daughter sees and hears things. Things that doesn't exist. That's in fact stationary, not moving. Or silence, not beeping or talking.
My daughter has a general anxiety disorder, as well as a separation anxiety disorder.
My daughter needs strong, mind-altering medications. Probably for the rest of her life.
My daughter is ten and she communicates on the level of a 7-year old.
My daughter is at the emotional and social level of a 7-year old. This classifies her as having Global Development Delayed, though she past age 5, when they don't diagnose it as such anymore.
My daughter probably has a chromosomal disorder, or at the least, accordingly to the geneticist, a number of genes that went awry at some point, for whatever reason. It's in her genes, bottom line. No way to fix it. No way to make it all go away.
My daughter probably won't be much longer in mainstream school. If we're really lucky, we'd be able to finish primary school (up to grade 7). Apparently, we can forget about her being in a normal high school.
My daughter's future would be impacted. Severely impacted.

My son has an immunity disorder.
My son has heart "issues" (no idea at this stage precisely what it means anymore). He still complains about the heart palpitations.
My son never developed any antibodies to his baby vaccines, and is vulnerable to any and all of those diseases. Living in a country where TB is rife... it's scary. I always thought it's okay, he's covered. Same with diptheria. Tetanus. Etc. The realisation that I've pumped him full of chemicals, put him through the pain and horror of baby vaccines for ABSOLUTELY NOTHING. No gain, no immunity. It's nauseating.
My son has some underlying condition. It could be mild, or it could be progressing and life-threatening. We don't know.

All of the above is what my children were diagnosed with or we've been told by various specialists JUST in the last 6 months. It doesn't take into the account the myriad of other things all of my children has already been diagnosed with over the 12 years before that. It's JUST this last 6 months we've been told all of that. Do you have any idea how that feels? How awful and difficult it is? It's.just.too.much. I can't anymore. So, I'm sad. Just sad. Because I don't have the emotional reserves anymore to be fighting, to be angry, to be tough and strong. I'm just sad. So very, very sad. All.the.time. All.the.fucking.time. Excuse my french.