Wednesday, August 25, 2010

A new hobby

The past few days, let me think and remember. Working to set up a Paypal and try to learn how to ask for and accept help from people. I have Aspergers, it's hard for me, a lot of times honestly.

We have a really awesome friend and Wash's frat bro who it looks like will be spending a few hours with us a couple times a week in between classes. Gives me a chance to do what I have to do, and Wash loves his friends. I'm happy for this.
And for the gifts and cards and postcards that occasional show up in my mailbox, not just overdue bills.

I had a good time working out my knee in physical therapy this week so far, as much as it hurts I know it's for the better. I just want to push through this and get better - even a little- every week.

I also finished "Under the Dome" on Sun. Took me 4 days, but that was counting the two and a half that Wash spent complaining about me reading. I brought this up in therapy, his life of double standards. He begs and bugs me for months to read again and when I find a good book and a good story he spends half the time trying to distract me and take me out. Not really fair love. I didn't give on this. He was fine and had his kitten, I wanted to and did read my book and finish. And I did hate and cry at some parts, some parts far too close to what my own life was and is like. The sudden growing pain that isn't spoken of and the sudden turn from a loving soul to a cruel abuser. I try to forget those days, but there are times I cannot. There are marks still left. And it felt like I was in Wash's head at that point; hearing Arnie speak and hit me.
Apologies dear reader if I have not explained this lately, Wash refers to his tumor/ personality with it as "Arnie", not himself.
It was stressing.

But the story was more important and I finished.

It makes me wonder though, about our own story. Our own ending. When and what that will be. How close, how far? Is it weeks- I think no. Is it months- I worry yes. Is it years- I never let myself be completely set on that. I know this disease too well, for every 5 year survivour there are 98.~ % that will not survive.
Which brings me around to the issues of today.
A little fight - tiff- between him and his parents. He told them the other day he wanted to try and find an Adult Make A Wish type program or sponsor who will give us a vacation at Disneyworld over my birthday. He's never been and neither have I. He wants time off to relax and live while he can, and so do I.
He wants it on my birthday. He wants me to have a treat, something special, something good for me to hold onto and remember.
And this I think is only part of the bigger issue. I'm not certain why his parents would object to a vacation. A we-are-only-going-if-it's-paid-for holiday. Because to see him getting that would perhaps... solidify? to them that he is in fact, terminal.
I have my theories why they have not so far, despite the articles, doctors, hospitalizations...
They are not the ones taking care of him. I am. They don't see him at his worst. I do. They don't see his pain. I do. They don't see the medical files, the statistics, the grim looks from questions of years- plural. I do.
I see him sick. I see him cry. I see him hurt, and begging for relief. I see his hard times and I hold him until he can move past it, or until I have to carry him past it.

And that's my marriage. That's my devotion, my love, my right. My life is to give him the best life that he wants right now.
His parents don't see that, I don't think.

For him to do this, go away on a "last hurrah" (which it might be) will sink it in that he is dying.
Now, we've slowed it down a lot, but he is still going a lot faster than say I or perhaps you, dear reader.

So many issues.

Aside from that as of next month we will have been infertile for a year.
I'm crying a bit, because it is just hard to write, to speak of, to think about.
I've had so much taken from me, so much lost.
And I still have 62 days before I'm even 24.

Where do we go from here?


  1. Sweetie! I am so very proud of you. Having been where you are, a bit, I know just how very difficult it is to ask for help but how very necessary it becomes. I did not know you had Aspberger's so I cannot fathom how much more difficult that makes it. You are brave. You are strong. You are doing what I believe is the most difficult thing a human being can do: stand by your loved one as they leave this world, way too far ahead of schedule.

    I wish I could give you words that would help. I don't think there are any. I will say that: There are no right answers; no perfect way to handle things that you must aspire to do. Whatever path you choose will be the right one for you.

    I remember when I finally broke down and emailed all of my friends and said: I give. I need help. Please help me. The amazing thing is that people wanted to help me; they just didn't know how. It is a *gift* to let people help you, because they feel helpless watching you in pain and feeling unable to act. Give your friends the gift of being able to contribute, if you can.

    I want to help you! Tell me what I can do for you remotely. Paypal? Amazon wishlist? FOODIE items for your pantry? What is the nearest chain grocery store that might have a gift card I could send?

    Send me your mailing address: and let me see what I can do to brighten your day a bit, here and there. Please?

    Thinking of you often. I am with you.

    - ZenHappy aka FunChefChick aka Rose!

  2. Please do set up a PayPal--I'd love to help you out, even a little bit. I got help from some friends when I really needed it, and I'd really like to pass it on to someone else.

    --Queenjulie from Jez and

  3. Yes let us know when you have Paypal set up.
    I hope you will be able to take a trip with Wash. You both could use some time away to relax and make new memories together. Sending you so much love.
    (brenbrowning from Jez)

  4. ZenHappy said it.

    People want to help; people need to help. You're practically doing us a favor by saying exactly how we can help. It's a relief to do ~something~, anything.