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April 11, 2007

Lots Going On...
Anyone still out there?

After a loooong absence from the website, I'm finally back. Believe me, it's not that I haven't had anything to say...quite the opposite in fact. Too many experiences and activities crammed into a really fast-moving six weeks or so, and I can't find the time or energy at the end of the day to begin to capture it all.

First and foremost, please check in over at to follow Bob Lee's progress on his 6,500-mile bike ride. His nightly blogging puts me to great shame, but makes for excellent reading! We are soooo lucky to have such a truly incredible ally in the fight against ALS.

Secondly, I do have a somewhat legitimate excuse for my long absence. I have been working on three different articles for various publicationstwo of which are now available and can be found via links on this site's "In the News" page.

Thirdly, we spent an exhausting but exhilarating day yesterday with a crew from ABC News Nightline, a very caring and gracious group who put us immediately at ease. I have been almost afraid to mention this for fear the story will for some reason not come to fruition (not telegenic enough? not telegenic at all? too rambling and long-winded? house still too cluttered around the edges???), but we're also very excited and want to share the news of this fantastic opportunity to raise awareness. They are working on a segment that is tentatively being slotted for a summer (perhaps early July) air date. Please stay tuned for more info on this!

Our lastand definitely BESTbig news is one of those "I'm-almost-too-afraid-to-mention-this-for-fear-of-jinxing-it-but-hey-it's-already-been-in-the-newspaper-so-what-the-heck" type things...

Tomorrow morning Ronald Fox, a wonderful gentleman from South Carolina, will load a top-of-the-line power wheelchair into his handicapped-accessible van and, along with his two sons and a grandson, he will drive them 900 miles to our home in Grayslake. The wheelchair belonged to his beloved late wife, Nancy, the light of his life through 44 years of marriage, who was diagnosed with ALS in 2003 and died March 5.

He will do this because he read about our family in the MDA's ALS Newsmagazine, and he decided on the spot that he wanted to do something that is still almost incomprehensible to me: he wants to give the wheelchair and van to us so our family can continue going and doing and seeing for as long as we possibly can. His only stipulation is that, when the time comes, Jim will donate them to another ALS family to enable them to enjoy their time together to the fullest.

Even as I write this, I can't find the words to describe his gesture or my feelings about it. "Generous" and "grateful" don't even begin to scratch the surface.

I can say that one of the amazing benefits of my ALS diagnosis—and yes, there are a very precious few—is having yet another opportunity to see and experience firsthand the incredible outpouring of care and compassion toward a family in need.

As Bob Lee pedals along on his 6,500-mile odyssey on behalf of thousands of cancer and ALS patients and their families, as Ronald Fox prepares for an 1,800-mile round trip to ensure that one family's last months and years together are rich with travel and great memories, my heart is filled with the love these gentlemen and so many, many others have shared with our family. And I am inspired by them to use whatever time I have left to try to make a positive difference in the world in whatever way I can. 

1:03 pm cdt          Comments

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Welcome to Aimee's Blah, Blah, Blog...
With great trepidation, we introduce the latest feature on a blog.

We acknowledge the pathetically long gaps between new entries to the website, and we appreciate the gentle prodding from visitors who would like to see more frequent updates about what's keeping us busy. 

So, in an attempt to dispel the notion that Aimee lounges at home all day in her World Series Champions gear (okay, that part is true) with her feet up (never!), eating bon-bons (often) and catching up on the latest trade rumors and spring-training reportswhile Jim is out saving the world in his S-emblazoned red cape, of course—we are experimenting with a blog to provide (weekly? biweekly? monthly?) updates on our activities.

However, come Opening Day, we're not promising anything...

[Note: Aimee is the author of the blog. All first-person accounts are hers unless otherwise noted. Any pro-Cubs entries are obviously the unauthorized work of Jim and should be reported to the proper authorities immediately.]