Like Diamonds…

Loved One and I took Sweet Child to a regularly schedualed Dr appointment today.

We were informed that although Sweet Child doesn’t need a feeding tube yet it’s only a matter of time and we need to get used to the idea.

S.Child was gainning weight and got sick two days ago and is now not eating again. We were doing so well. I just don’t feel like I can take this. On top of that I’ve been reading about other peole and thier suffering and deaths and triumphs.

Can I really be strong enough for this? I don’t want to have to be this strong! When I was a child I always said I was going to grow up to be big and strong. I thought if I grew tall enough and was physically strong enough I wouldn’t ever get hurt. Now I know the worst pains can’t be avioded by physical prowess.

We came home for lunch and I tryed to talk, and pleade with Sweet Child to eat. Just to tast. Nothing.

This is beyond me. How do I save my child?

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Change We Didn’t Choose

I’m tired…

H1N1, you know what I mean. It’s out there…in here…around and over there… everywhere…

Will the vaccination help us avoid it or will there be shedding? Will Loved One get it at work from the others who already have it? Will Sweet Child get it from me? Will I get it…at the grocery store… at the Dr. office where I got the vaccination… from Loved One?

I’m tired of being scared. I’m tired of having to think about SO MUCH. I’m tired of know that “it only kills people with underlying conditions” underlying conditions like the one Sweet Child has.

I want to run away somewhere warmer and sunny and very very very clean. I’m tired of knowing about germs and calories and not meeting expectations. Expectations that are based on conditions I can’t control.

There’s a  lead balloon inflating at the center of me. It’s full of sticky clay. I’m weighed down.

The new shower head will help Sweet Child stay healthy…It’s solid brass…

It’s okay.
I miss our old shower/life.

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Tired

Sometimes I really wonder if I can continue to roll with the punches or if the next one will knock me out completely.

So, far I’m still here. How do I start feeling in control and satisfied? Since my diagnosis at the beginning of Aug. I just feel like my life is falling apart. It’s not that I’m all that bad off I guess I just can’t get past the feeling that I’m not good enough. And lots of the time I feel I’m not good enough for Loved One. If Loved One ever left me I think I would snap. Still I sometimes wonder if Loved One wouldn’t be better off without me.

I’m so tired.

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I’ll Do My Part

I ask for happiness and now I’m prepared to do what I can to make it happen.
Art can help me be happy.
I enjoy photography as a hobby. I am going to begin posting the pictures there that I think are beautiful. Only the ones I’ve taken and havn’t posted already.

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Can’t take it today.

I just want to cry. I should be happy because needed medical equipment arrived for Sweet Child today. But all I want to do is get away.
i think Loved One has been feeling the same way. LO has been looking for travel deals on-line on a daily basis. it’s hard to believe how difficult this is.
And it’s hard to believe how little I understood only 5 months ago. 5 months ago what were dealing with wasn’t really a possibility. It couldn’t happen it would be like playing the “what if” game. What if Sweet child is diagnosed with a terminal chronic illness? What if Loved One needs invasive medical treatment to continue a normal life. What if I then wind up in the hospital for a condition even the doctors can’t believe I have because I just shouldn’t have it. What if all of this gets in the way of the desire Loved One and I have of expanding our family? What if we go broke or bankrupt because of circumstances that were truly beyond our control. What if I just can’t do this anymore? What if I think I need help but am ashamed to admit it and wouldn’t know where to get help anyway?
I know that no one can understand because no one is in our exact shoes. Others have their problems and I can’t understand them. But I know people are trying to understand and help, and I am trying to understand them and help.
This is so hard! Why does it have to be so up and down. I just want to go up and up and up. But then I fall into these slumps and I feel overwhelmed and sad and powerless. Life doesn’t have to be perfect but I would like to be happy most of the time anyway.

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No One Really Knows.

My heart ache is mostly about our next child/children. We have one Sweet Child but were always planning on having at least one more.

It’s so different than how I feel things should be. We’re fertile. Loved One and I could get pregnant any month we choose. The problem is a genetic defect we both carry. Sweet Child has it and any other children we have will have a 25% change of getting it, or a 50% chance of being a carrier of the defect like Loved One and I.

Some people will consider us very selfish and irresponsible if we have another child without actively preventing this genetic defect. And honestly I’d really like to avoid giving it to another child, it’s heartbreaking.

We can’t afford to actively prevent it. It would be like buying a second house. It’s also heartbreaking to realize that we may have to choose infertility. It’s hard to think that the best thing you can do is choosing another thing you don’t want.

This is hardest at night. At night I lay quietly beside Loved One and I don’t cry but my heart longs for the children that can but won’t be.

Last night I was out with the gang. We each have our own problems. Everything from messy divorce with a custody battle, to a longed for son who will die as soon as he’s born. My problem seems so small, I wished I could somehow express myself and get some emotional support. I knew I would only sound pathetic.

Then when I got home Loved One and I sat side by side and I wanted to tell. I wanted to say how hard it is that things aren’t going the way I thought they would. But there was nothing to say. Loved One is hurt by it too. There was nothing talking could do to ease our pain. So, we said “I love you.”

We were considering other options for a while but now there are new medical concerns for Loved One and I. There’s no way we can even make the decision to just go for it and take our chances with 25%. There’s no way we can do that until February 2010. Maybe by then we’ll both be okay with Sweet Child being an only child. Maybe I won’t start hopping again that an accidental pregnancy will pleasantly surprise us.

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“Gimee the bike”

I can’t believe I really believed in this one.

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Hello world!

My purpose in this blog is to have a place to put my heart ache, leave my pain behind and my tears in a pile.

I’m not intending to have any following or even any readers at all but I will welcome comments from any and all who stop by to read.

I’m not interested in being identified so I will be nameless, my spouse will be Loved One, and our child will be Sweet Child.

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