Wednesday, February 25, 2009

Reminder from afar

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.


heidi @ ggip said...

We were just talking about this topic last night. We feel so lucky to have doctors that didn't tell us our life is going to be completely horrible. Seriously, those doctors who do need help! Because they are wrong.

You are right, your blog has meaning and gives hope. :)

Anonymous said...

No matter how old we get, or how much we think we've learned it all, there's always something out there to surprise, delight, and humble.

Love to you all from Grandma K.

The Watczaks said...

Emma was diagnosed a couple of months ago with CdLS and I have to say that this little community of bloggers has been an absolute lifeline!!

But I hear you. As a fellow "loser with a blog" you wonder if this whole blogging thing is too self-indulgent or something ... We all need to be reminded that we are all here for each other. I'm just at the beginning of my journey, so I keep blogging in the hope that someday my blog will bring the hope to someone else's journey that your blog (and everyone else's in this little community) has brought to mine.

Misty said...

thank you for the reminder! i have been trying to think about how I was feeling at this time last year. i heard so many negative things... i was so scared and it almost caused a wall to go up! if it weren't for the blogging friends that i have (especially little hope), it would have been THAT much harder to get through it. i am so glad to be here to support new parents, and to see mason's little buddies blossom everyday!

seeing your beautiful little girl and reading your words is such a therapy to us all whether you update daily, once a week, monthly!! we love to read about and watch hope and you and maureen!! (and the dog and the cat :)!

and will someone from North Dakota PLEASE, PLEASE check out journey of hope??!!! oh my goodness, that made me laugh out loud!

Rachelle said...

We live in Nebraska (that's kind of close to North Dakota) and we love your blog. I draw so much strength and encouragement from all of our CdLS blogging friends. I don't know how we survived without these lifelines. So keep up the good work ~ and just take it day by day. I am so glad you were able to help that woman. That good enough reason to keep blogging.

Deni aka Mrs Chicken said...

yes, we also had an interesting beginning, the first doctor who suggested the diagnosis, was very dire about it, but our geneticists were fantastic. But at the end of the day, you have to get yourself and your partner/family, in to the right mind set, initiate as much early intervention support and therapy as possible, and give your little one every single opportunity to grow and develop in to the beautiful little people they are to be!

tiger said...