Life is not pretty

I realized today why I haven't been updating. It's not about time. If I have time to play Farm Town, I have time to update my blog. It's because I can't make everything shiny and pretty. I'm a walking disaster area. 50 shades of effed up. Not all the rainbows, kittens and dragonflies in the world will make things pretty right now.

It doesn't mean there are not good moments in my life right now, there are. The Yellow Jackets are in the play offs, undefeated in conference, and my Monster Mash is a freshman lineman. He's been teased as being "the cutest little lineman in the WPIAL" by one of the seniors because of the dimple that has gotten him out of so much trouble in the past. He's doing decent in school (although we need to discuss that D in science tonight... ) He was in for a good bit of last Monday's game against Burrel, which made him over the moon overjoyed. And when my kids happy, I'm happy.

But, (always the but) Monday, I also had a complete emotional breakdown once again. I couldn't stop crying. What started it is barely worth mentioning, I couldn't pay my cell phone bill. It's not that my cell phone is more important than eating, or making sure my kid has his medication. Believe it or not, my priorities are straight on that. If not, the cell phone would be on. It's inconvenient, but that's nothing new. A minor disappointment in the grand scheme of things. Once that sunk in, everything hit at once: J's pain, the frustration of not knowing how to help him, the liver disease, the car, our family situation(or lack of family to be more specific) The embarrassment of once again being caught crying on the porch. Not being able to see because my eyesight is getting worse and not being able to do anything about it, my teeth (I seriously look like a meth addict. But it's from years of no dental insurance and now, every penny going to try to save my boy.) And I realized Monday that J's disease is terminal.

No, I'm not an idiot. I've been saying all along that liver disease could kill him. It's just that, for a long time, it was just chronic. I got used to it. It was a blindfold. Chronic Liver Disease mixed with Chronic pain. Of course, at first, no one in the family believed me. How can a 15 year old have such a horrific disease? I was exaggerating. I had to be. It couldn't be happening. And a good majority of those people distanced themselves.

I can pretend that it's all fine and dandy, that we're better off without them, and truthfully, we are. But it doesn't mean that it still doesn't rip my heart out to learn how insignificant we are in the lives of those who we thought loved us. It is better to know now, rather than later, but it's still soul crushing to feel so very alone in the world. And I have learned to depend on no one but myself.

It also showed me to break the cycle for J and E. I want them to know that they can come to me with anything and I will support them emotionally and I will break my back to try to help them figure it out. They will always have me behind them. I will not become like the ones who hightailed it out of their lives.

I'm actually used to trying to figure out a back up plan or doing without if need be. It's not easy, and it's getting to be much much harder as he continues on this downward spiral of liver disease. I've learned that I have the strength to deal. Theres no other choice. Every morning, I wake up, and the punches hit where they may. It's one step infront of the other because there is no other option. Even in the middle of a breakdown, I know I have to wipe away the tears eventually and go forward. So, I deal. And I'm learning not to worry about what others think.

In the grand scheme of things, no one can live my life for me, and people are going to walk in and out of our lives as long as we live. And if they can't handle seeing me cry because my cell phone was shut off, and understand that it's not selfishness causing the tears, then let them not be able to handle it. I didn't ask them to pay the bill. When I ask for money (and I do, I won't deny it.) it's for much more important things. Food, appointments, medication. Things needed for survival. I won't ask for money for a cell phone because it's not important. But damn it, if I want to cry about it, I will.



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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 

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