Inauguration day.

Jeremy biked to DC for Barack’s big day. It was cold, exciting and a long ride. He estimates that it was about 30 miles back and forth. We spent the day at our cousin’s house eating sandwiches and bagels and watching the inauguration on a 42 inch HDTV. I have never spent time in front of such a grand TV, it’s almost like being there (except not so cold).


I have been preoccupied this weekend thinking about being Edda’s mom. We have started drawing up our wills and also all this extra focus of Edda starting kindergarten has thrown me for an emotional loop which I do not like being in. I spoke with a friend last week who has a disabled son and we talked about whether it was possible to be happy if your child has a long-term disability. She is not so sure if it is possible, I told her that I needed to believe that it was possible, otherwise, what is the point of it all? The pursuit of happiness – that’s what I’m doing.

Maybe in response to that conversation, I was a little determined this weekend to take Edda to see a little more of the world. She spends so much time at home, there is so much more to do! That’s why we did the crazy ice skating thing. I had no idea how it would work out – would Edda yell her head off? would she fall to the ground immediately and break an ankle? – she did neither. We went around twice.

5 thoughts on “Inauguration day.”

  1. Good for you for taking her out! Doris, I would say ofcourse it is possible to be happy. It is what you make of it. I know the transition to Kindergarten is scarey…One thing that made me so angry wasn’t I couldn’t just show up at my home school and register her. It was so unfair! Caitlyn’s joy is what makes me happy…Hang in there…And if you need to talk about Kindergarten, please don’t hesitate to email!

  2. There is an old Chinese saying [not again quoting an old Chinese saying :)]that you are on a boat that is running along narrow water ways, don’t worry the crossing bridges ahead of you, the boat will find a way to pass them all eventually.

    Who knows? At least, we all are doing our best for Edda. I like her a lot. Especially, her character, so far I can tell, is just a carbon copy of me :). Besides, she is lovely.

  3. I just want to say that I love reading your blog! It almost always makes me smile, if not laugh.

    I keep thinking that I would be truly happy if Rett Syndrome was cured. But if Riley never had Rett Syndrome to begin with would I know to be truly happy? I don’t know. We are nearing a year since diagnosis and I keep hoping the farther I get from that point the closer to happiness I’ll get.

  4. Your father really said it better
    than I can–but since when is happiness a function of whether
    you have a child who is challenged?
    What about all the people who
    have perfeclty ‘normal children’and are miserable. IF you can’t figure
    out the answer to this, then how
    come Edda seems to be quite happy?
    SHE is the teacher, Doris–look and
    learn. BTW, I’m not sure how
    you ‘define’ happpiness, but
    based on my experiences, Id say
    it might be vastly overrated. BUt
    then I feel that way for sure
    about marriage and a lot of other
    things. YOU are given the
    choice to see that Edda is a
    blessing–even with all the
    turmoil, et. al Everytime I’ve
    been around her, I”ve left with
    a big smile on my face. She knows
    how to play. She knows how to
    love. YOu want a life without
    problems? It seems to me you and
    jeremy and Vince handle a very
    difficult situation with great
    skill and aplomb–or whatever.
    I could rant on, but my final
    snarl is ‘happiness’ is a
    function of YOU-and whether
    you see the glass as ……for starters. Sorry for the tone, but

  5. This is something i’ve thought alot about. Claire is 10 now, and i did not always feel this way, but now i know that i feel joy so much bigger than i could of before! Things have gotten much more challenging as the years go on but the joy of knowing and loving Claire just keeps growing.She really is a teacher and everyone who spends time with her are changed forever. It took a long dark time to let this in, but i am truly blessed to have such an amazing person in my life. Oh, and school is great! she loves being around other kids and she is well accepted in our little school.

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