Sunday, February 15, 2009

Ok on the sickie front...

Well, this has been a week to forget, but with a little to remember. Unfortunately, Nana had to spend from Wednesday through today in the hospital (It's Sunday night) and David was in there with her. We saw them (from somewhat of a distance) this evening to say goodbye as they came to pick up their stuff and they don't leave Denver until Tuesday am, but all things considered, we all felt like this was the best course of action to protect H from any bugs.

So far, knock on wood, I think we have dodged the major bug, and Heidi is feeling good tonight. Nobody here is sick. I realized yesterday, when I felt like a million bucks that I REALLY did feel junky on Thursday and Friday. I'll do a massive sani-clean of the downstairs area tomorrow and hopefully we will have staved off the nightmare that would surely follow H catching a cold or the flu. As it is, she really can't cough with any strength and that is a scary situation.

On the other hand, she's been feeling pretty good and I feel like I've noticed a little bit of "extra" movement in her legs when I put on the pants, etc. Maybe it's my imagination, but maybe the broccosprouts are working! Just maybe the roller coaster is going up a bit.

So we have been continuing through the video project and it's fun to see the girls when they were little and it's fun to see them seeing themselves when they were little. We watched about an hour and a half tonight of video that included our Hawaii trip in 2000 when Rachel learned to eat sand and crawl up through Shelby's 4th birthday and the birthdays, Easters, Thanksgivings and Christmases in between. It's interesting to see their personalities then and reflect on them now, because it seems that their general characteristics have not changed all that much. From Shelby singing "Tomorrow" at the top of her lungs (with Aunt Jacquie also singing at the top of HER lungs) to Rachel at about 1 and a half holding Jillian and feeding her a bottle when she was about a week or two old. That is so Shelby and so Rachel too. We finally got to Jillian being in the picture...thank God we actually have video of her. I know too that we are coming up upon the "lost years" from 2004 to 2007, where we took ZERO video of anyone. That almost seems like a crime now.

Let this be a lesson to us. Take MORE video! Especially now that it's all digital and we can chuck the junk with the click of a button.

I also want to take a moment to thank everyone that has been helping out. We still get meals three times a week from people in our community of friends and I hear that there are not enough days on the calendar for everyone to bring meals that want to. Also, the lunches and the hang out time that happen weekly are awesome from many perspectives and certainly help break up the monotony of H's days. I know everyone wants to help more, but there is only so much anyone can do right now and we need our time to chill too. You are all amazing and without you, we would be in a world of hurt that I can't imagine.

We have had a lot of visitors lately and right now, with no one officially "on the books" we feel like things will get back to somewhat of a semblance of normal. While we love to see everyone, we also need time to de-compress so this will be good. Soon, I'm sure, we'll be aching for company again.

I have also decided to write a book. This has been a goal of mine for a long time, though I've never pulled the trigger. Always something seemingly more important to do. The night that Heidi stayed at the Hilton with K to stay away from the bugs over here, my one night to get a lengthy string of hours of sleep put together, I woke up at 3:15 in the morning with an inspiration. I rolled around for a few minutes begging for it to go away, but as these things have happened to me during my life, I know that getting back to sleep is a pipe dream, so usually I get up now and write whatever it is down to get it out of me. If I don't, it feeds on me vs. the other way around. It's strange, I know, but that's how I feel when it's happening.

Over the years I have woken up with full songs in my head... the lyrics, the music, everything. I don't know how to read or write music, so those have been lost. I have woken up with full plots for fiction crime novels or other stories clearly spelled out from start to finish, but I've not gotten up and gotten them laid out to a point that I could fill in the gaps with creative writing, so those too are probably gone.

Given my need for creative and emotional outlet right now, I couldn't let it go the other night, so off I went. I wrote until about 6:15 and then, knowing the girls were going to be up in about 1/2 hour or less, went back to bed to A) try and get some winks and B) to be in bed when they woke up so as not to freak them out, since I hardly ever am. :-)

The other day I saw a speech by Elizabeth Gilbert that she gave at the TED conference recently. I have not read her book "Eat, Pray, Love" (though It seems like almost every 30-40 something woman has) but her speech was very poignant to me. It was about the view of the "creative Genius" over the millenia and how it was once viewed as a divine thing to "have" a Genius, which was an external visitor with it's own agenda and ability to come and go as it pleases vs. the more contemporary view that someone might "be" a Genius, a much more dangerous license to floor it on an egotistical autobahn.

Call it what you will, I totally get what she was talking about. It is not every day that we are visited by an inspiration, and when we are, we should appreciate it and capture it if we can. Give it a chance to become something other than a dream or a whisper of a song that drowns in the mornings first cup of Java.

In any case, thanks to the many of you that have encouraged me to write. I'm working on it with no idea how long it will take or whether or not it will be any good. But it will not be inside of me, feasting on my brain. Hopefully it will be out there allowing others to feast on it.

I've already got a name for the book. It was the thing that woke me up at 3:15. But like my boy Billy the Kid Shakespeare once wrote "What's in a Name? That which we call a rose by any other name would smell as sweet." I think I'll write for a while and see if I've got a rose on my hands or a huge slice of Noni fruit. (see it here on the right side of the page:



  1. I very glad to hear that everyone is feeling better and that H. did not catch anything last week. Also, I am looking forward to receiving an autographed copy of your first best seller. :-)

  2. Hey Billster, unleash the genius, and "Write On, Big Brutha"!


  3. I just watched the TED video last week where Elizabeth Gilbert spoke - what a fantastic talk...she was funny, inspirational and inspiring all at the same time. I haven't read her book yet, but plan to do so now. I say be creative, Bill - let it out!

    I'm glad to hear that you, H and the girls didn't get sick either.

    As to the insomnia - I think it's called getting old ;) I haven't slept well since I had Jazz 11 years ago.

  4. inspirational - inspiring DOH I need some more coffee.

  5. Thank you so much for your blog. Please keep writing and sharing your story. Its so important and helpful.

    My sister Stacie has had ALS since she was 21 and she will be 33 in April. We have not been able to communicate with her for over 10 year now. She has a very progressive form of ALS and lost everything within 1 year. I also lost my father in June to ALS. He was officially diagnosed in November and the illness took him quickly. Its been a really tough road.. and reading your blog has helped me feel like I am not alone. I will pray for you and your family. I am so grateful that she has you.

    God Bless,

    April Thomas
    Cape Cod, MA