A few admissions. One: I am a loser. Two: There was a time, more recently than I'd like to admit, when I spent an inordinate amount of time checking traffic for the blog, hitting "refresh" to see if anyone logged on in the past 3 minutes and raising my clenched fist to the sky and wondering, "What, dear God, must I do to get a reader from North Dakota?"
In the past few months, like a lot of losers with blogs, I've grown slack, felt guilty and wondered whether it's run its course. Then, today, out of the blue, I open an auxiliary e-mail account that I haven't checked in weeks and think, "Wow."
A woman from far away found the blog. Her child had recently been diagnosed with CdLS. Shock gave way to fear and anger. Presented by doctors with a grim prognosis of raising child with behavioral difficulties, she dreaded the future. She wondered if she would stop loving the child. She wondered if she should because what the child would do to her and her family.
It was a gut-wrenching note. Her message bowled me over: Thanks for writing, thanks for giving her hope that life with CdLS can be full of joy.
It brought tears on a hectic day when I was beset with worry about too many things that aren't important. It reminded me of the things that are.
Her note brought back a lot of memories, a lot of worrisome nights not too long ago when I was wrought by eventualities. What if Hope grows up to bite me? What if she never walks, talks or feeds herself? What if the rest of our lives will be spent caring for a severely disabled, self-destructive girl?
What if, what if, what if. Fear, fear, fear. Marcia, Marcia, Marcia.
Those fears haven't disappeared, but they no longer consume me. What does is the progress of this remarkable little red-haired beauty who is laughing more every day, trying to figure out how to crawl backwards, cutting her second tooth and seems to have kicked whatever nasty bug waylaid her.
The note also reminded me of the comfort I've found as well through this nifty little network of blogs by parents of children with CdLS. Peeking into each others' lives reminds me that, we all have challenges, some more than others, but life goes on, and it can be great in ways we never imagined.