Tuesday, July 8, 2008

Is this thing on?

My very first post on my very first from-scratch blog!

This blog is about my daughter Joy, age 4, and my varied musings on what I'm thinking about in context of being her mama.

Joy is a lively girl with a ready laugh and a bucketload of charm. She turns on the charm high-wattage when it comes to wanting adults to do things for her (or with her) and distributes hugs and kisses freely both to current friends and friends-she-hasn't-met-yet.

She can run like the wind, perpetually startling her observers and pursuers. She's physically powerful pretty much all the way around; I first noted in her baby book how unusually strong she was at the ripe old age of two weeks.

She takes life on without fear, climbing and jumping and swimming with enthusiasm.

Joy also has Linear Nevus Sebaceous Syndrome (LNSS), a rare neurological condition that in her case consists of cognitive issues, epilepsy, and a nevus sebaceous skin abnormality on her scalp that was removed in 3 plastic surgeries in her second year of life. She also has autism. She currently speaks about 15 words, down from 80 last fall. She has an extremely short attention span and pretty much runs her mama ragged!

The autism piece of "who Joy is" has been the most useful lens -- so far -- for finding common ground with other kids and families, and figuring out appropriate ways to help her make her way in the world. So to a large extent, I guess this is an autism blog.

But since Joy is a multi-faceted young lady, both personality-wise and in her medical challenges, I'm liable to go haring off all over the place. I'm writing mostly for myself, but also for family and friends already met, and also those not met yet. I hope there will be conversation, because I like conversation, but if not, that's OK too.

Much more about Joy and her family to come in future posts...

P.S. Why Elvis sightings? See the sidebar!

13 comments:

Niksmom said...

I ventured over from Maddy's site. I think we have some things in common. Well, okay, aside fromt he fact that I have a son and you have a daughter! My little guy also has multiple overlapping medical issues (including seizures, CP, autism). I'm looking forward to reading the rest of your posts.

redheadmomma said...

Hi Joymom,
And I got here from Niksmoms' site! I'll subscribe, come visit down my neck of the woods too! :)

Redheadmomma

Lynn said...

You are an old fart in blogging terms. I don't think I ever thought about the name of your blog til today...we get lots of Elvis Sightings around here. Just today "Betty Crocker!!"

JoyMama said...

Lynn -- Whippersnapper. Git offa my lawn. Hmmph, kids these days. (Just joshing -- the more, the merrier!)

jazzygal said...

Great first post, really gave a flavour of your gorgeous girl.

I too was intrigued at the title.. I adored Elvis when I was younger!!

So, we both had a December Diagnosis...you started blogging in July 2008 and me in August 2008! Coincidences!

xx Jazzy

TherExtras said...

Don't ask me how I did it but comments are open on my first few posts - the 2nd of which was entered in Jen's Gems post.

I have always and still moderate comments. I don't mind being old or having my age acknowledged. But all other forms of name-calling may not make it to publish. Just saying.
Barbara

Cheryl D. said...

This was your first post? Holy guacamole, that's a really solid start!

JoyMama said...

Jazzygal - coincidences indeed! Looks like we've both come a long way since then.

Barbara - here's looking up to your wisdom and experience! (Though blog-wise you've only been around a year longer than I, as I just commented on your first post.)

Cheryl D - aw, thanks! I was pretty deliberate about how I wanted to go about the writing. Gathering an audience continues to be a much more haphazard part of the process for me!

Life In A Pink Fibro said...

I love the name of your blog, and the reason behind the name. Great first post. Visiting from Blog Gems.

@jencull (jen) said...

haha, can't believe Lynn called you an old fart but 2 years blogging does seem epic :D Loved reading this, thanks for joining in Blog Gems. Jen

JoyMama said...

Life in a Pink Fibro -- well, at least when someone Googles "pink fibro" you know they're likely looking for you -- when someone lands here Googling "Elvis sightings" they're usually looking for the King of Rock & Roll! (And now I know that "fibro" can mean something other than fibromyalgia -- learn somethin' new every day!)

Jen - thanks back atcha, for hosting Blog Gems! My blogroll is full of bloggers who've been going for longer than I, but two-plus years does feel like an achievement.

Pie Maker said...

Hi JoyMom, I remember this first post! After I "found" you over a year ago I went back and read your archives. I've always loved your writing style and have learned a lot from you over time. I'm glad you write and share Joy with all of us! (I love the double meaning of that sentence!)

JoyMama said...

Pie Maker -- the name does lend itself to multiple meanings, doesn't it? :-) I'm honored that you read my archives clear through. That's an immense compliment -- thank you.