7/5/15

Happy Happy Joy Joy Joy

I'm supposed to be happy with the life I'm living. It could be worse, and I am grateful for what I have, The times coming where I can no longer live through my children. Ed's quickly forming a life of his own. He's off to High School this year. A member of the football team. He has his friends, he has a part time job, he's growing up.

Jamey has his friends. He doesn't get out as much as Ed and working just isn't in the cards for him at the moment. But he has a life of his own as well.

Granted, both boys are going to need me for some time to come. And even as they go on with their lives, I will be involved. But they're not tiny anymore. Ed doesn't need my problem solving skills at all times, and right now, since we're in watch and wait mode, Jamey needs me for appointments and clean underwear.

Mom on the other hand...
And that's the most frustrating. I understand fully the type of relationships are going on in this house, but currently, there's not a damned thing I can do about it right now. But I am working on changing that. And once it's changed, I will not be going back to it. I just need to get my priorities straight and keep them there. It's a lot easier said than done and I'm not sure once it's all said and done, who will still be on my side.

Fund raising for Jamey's medical expenses is becoming a huge priority. And I have no idea how to do things. It's all extremely scary. What do we focus on? The CRPS? The liver disease? He's got quite a while before he hits the level of transplant, although as things are currently going, it's in the future. I won't exaggerate it. Things are bad enough without that added drama. But what do we do in the meantime?

He goes to Pittsburgh for appointments at least once every 2 weeks. And you can imagine how it is adding in 11 other specialists. Some are supposed to be every month, others every three months. Try getting a job around that schedule, or for the days that he's in so much pain, he can't even get out of bed. We might be on watch and wait for the liver, and testing this and that for the psoriasis. But the pain, that's always there. And it's huge.

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@TerrorMom

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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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