Monday, December 8, 2008

Knock on wood

This is the 100th post of 2008. I probably should write something profound, about the continual comfort of the community we've found through the blog or the cathartic effects of being able to occasionally unburden -- and perpetually make yahoos of -- ourselves.

All are true. No doubt. But I've got nothing. And that's great.

When we started the blog 13 months ago, we didn't know what we were in for. Hope's health seemed dodgy. We were astounded we got to take her home from the hospital, and then terrified by the prospect of taking care of her alone. We worried about surviving a winter of seclusion. Her heart issues seemed so grave we didn't dare verbalize them. We feared the future -- not only the prospect of life with CdLS, but getting so far ahead of ourselves, beyond the immediate crisis, that we could even have the luxury of far-flung fear.

In short: perfect material.

Good news for us, bad for the blog: As it always does, life seems to have rocked itself into an equilibrium. We have the same concerns and worries we always do. We still visit the same roster of doctors and have the same over-arching concerns. They just don't keep us awake like they once did. Sometimes -- coin over shoulder, pat Buddha on the belly -- life seems downright mellow.

It's been trending that way for a while, which is good. Hence three months of videos recreating Lulu eating hearing aids, mashups with Scooby Doo and imagined debates. It's caused no small amount of angst, chin-scratching over the direction of the blog and occasional publish-or-perish paralysis. During my most self-important moments, I've asked: "Oh no! Have I run out of things to say?" as though I'd once dispensed pearls of wisdom worthy of Mao's Little Red Book.

But then I remember what a kid told me once in high school detention: "Don't take yourself so damn seriously. Let's party."

Such encouragement sent me on a 12-year spiral of cigarettes, beer and video games, but the point remains: We have fun with the blog and are grateful we've found a small corner of the Internet. We're blessed to connect to so many CdLS families and honored so many folks still care. As Mr. T says, the rest is just jibber-jabber.

And of course, as Mo ruefully notes, I've probably jinxed us for life by proclaiming things to be easy as Sunday morning. As we've learned the hard way, there's a lot worse in life than a lack of material.


Misty said...

LOL (i know exactly how you feel)! HAPPY 100th:)!! I am so glad to have read your entries and shared in your lives! Your words have 'music to my eyes' :P and you and maureen AND HOPE have helped me through this first year in ways i could never explain with words!


Anonymous said...

If you've got to wear a knit cap and sweatshirt insdie you better turn up the heat or poor Hopesy's gonna freeze during her bath.


beth said...

Pssst, Steve...I think it's a fashion statement. Your brother is nothing if not current.

Brrrrrr, it's gonna be cold on the East Coast this week. Ice storm's a'comin'!

Heidi @ GGIP said...

Happy 100th Post.

Anyhow, I am glad you have a blog.

And I don't think life has to be in utter turmoil in order to blog...

Just my two cents...

kirstiealmy said...

First of all--love that pic--Hope is still the cutiest little pie I know. Secondly, I am finding your posts more enjoyable than ever! I'm still looking forward to your first book, Joel.