moms do what’s needed

Got a surprise call from a blogging friend today. Jaclyn and I met months ago in Cat Rambo’s “Blogging 101” class at Bellevue College. I got good vibes from Jaclyn while in class. And she’s every bit as nice as I thought she would be.

During our conversation today, she reminded me what her life is like on a daily basis. For 18 years Jaclyn has been caretaker for her only child. While this doesn’t seem an unusual situation from that of other moms, her situation is unique in that her daughter has a rare disease known as Galactosemia, a milk sugar disorder.

Galactosemia is a rare congenital disorder which affects the body’s inability to convert galactose into glucose. Galactose is a type of sugar, which is a breakdown product of lactose. Lactose is found in milk and milk products, including breast milk. Given that the galactose can not be broken down, it builds up in the body and acts as a poison that can cause serious damage to it‘s carrier(“galactosemia“). “As milk is important to a baby’s diet, early diagnosis is essential to avoid lifelong problems from this potentially fatal disorder.”     

The first trace of information that was brought to light about galactosemia was in 1908 by Von Ruess. He composed an article of his findings in an infant with many of the symptoms we now relate to galactosemia. This work has widely been accepted by scientists as the first reported case of galactosemia. However, at this time the diagnosis of galactosemia was not yet possible. It would be nine years before a similar diagnosis of galactosuria was largely accepted by scientists as a hereditary disorder. 

At the time Jaclyn’s daughter was born, galactosemia was not yet within the mainstream of medical knowledge. So doctors failed to correctly diagnose her digestive problems. Meanwhile the disease took its toll on the youngster’s body, leaving her permanently handicapped, mentally and physically. Having recently turned 18, the young woman reads at the level of a 4th grader.

Needless to say Jaclyn has been at the forefront of fighting her daughter’s fight to make the most of her life, such as it is. Where schools were not willing to pursue academics at a more challenging level, consigning her daughter to classes for children with special needs, Jaclyn decided to home school instead. With the help of other adults, her daughter is experiencing as full a life as she can. Their assistance also allows my friend some much-needed respite from her 24/7 role as caretaker.

Surprisingly, or maybe not, I never find anything in my friend’s voice to suggest that she is pained to be saddled with her daughter’s predicament. Jaclyn sounds like other moms I know who love their children, and do what needs to be done for them. Jaclyn is always upbeat, never belaboring the fact that her child is, in fact, unlike those now capable of venturing forth to make their own way in the world.

When Jaclyn calls it’s usually to ask how I’m faring with my blog. The last time she phoned it was to suggest an online site where I might want to self-publish. Today she recalled that I’d mentioned that my writing skills were honed when I had served as a paralegal for TWA in NYC. She wondered if I had the title of the book which had been instrumental in my learning to write. I replied that I learned on the job. I was enrolled in classes at night to obtain a paralegal certificate, a condition for the job to which I had already been promoted. So writing legal briefs for the attorneys with whom I worked during the day, quickly instilled me with the skills I still possess today. I learned to organize my thoughts on paper, and offer support for my assertions. Blogging has enabled me to regain my skills as a writer, after a 24-year hiatus.

When I asked with what she was currently involved, Jaclyn explained that she’s trying to secure social security benefits, however meagre, for her adult daughter. We both agreed that government bureaucracy can be mind-boggling. Because galactosemia is unfamiliar to most, she has found it daunting trying to convince bureaucrats of her daughter’s disability which has essentially robbed her of an independent life.

Ending the phone call with her usual laughter, Jaclyn admitted to signing up for Cat Rambo’s class on the writing of fantasy stories. My friend wants to take a breather from reality, and escape to the land of fantasy. God knows she deserves to enjoy a little make-believe.

for a mom whose life is her daughter’s, huge hugs…hugmamma.

“rehashing vs. recycling”

Thought I’d call attention to a recent text addition at the very top of the sidebar, to the right of my main blog area, where my postings are viewed. The words inscribed are

Use of my material: “rehashing” is a mess; “recycling” is ok, if credit’s given, where credit’s due…hugmamma.

I’d debated early on, when I first began posting, as to whether or not I’d try to restrict use of the contents of my blog, “Hugmamma’s Attention to Detail,” and now, “Hugmamma’s Mind, Body, and Soul.” As a novice blogger my goal was to write, and then get what I’d written out to readers on the internet. At the time, maintaining ownership of my printed words, was relegated to the “back burner.”

Cat Rambo, my Blogging 101 instructor, at Bellevue College, touched upon the subject of copyright. She’s a prolific author of fantasy, her work appears on bookstore shelves as well as on the internet. One such is the “Surgeon’s Tale.” You can peruse the many references to her on Google. One that had me smiling and saying “aha,” is that Cat Rambo has an MA from The Writing Seminars of John Hopkins University. No small feat there. She is also credited as being the fiction editor of the award-winning Fantasy Magazine.

With her depth of writing and blogging experience, and with views of her website probably past the 200,000 mark at this juncture, I paid close attention to what Cat Rambo shared during her trio of classes. While she did pursue one case of copyright theft in court, our instructor maintained that such a path is expensive, and without guarantees. She added, that, generally speaking, she considers “recycling” of her words a way to broaden her audience. From time to time Cat Rambo does share what she’s in the process of writing on her sites. But she does so with deliberation, putting out just enough to whet the reader’s appetite. Smart woman, I think.

My decision regarding “use of my material” has evolved over the 6 months in which I’ve been blogging. It seemed initially other sites were hijacking my posts and inserting them into what they’d written, or even going so far as to intimate that my words were actually theirs. The end results looked like a mess, in my opinion. They seemed a hodgepodge of sentences, assembled without thought. So I shrugged my shoulders, and decided that readers weren’t dumb. They’d see through the ruse. At least any readers who value good writing.

With my nose to the grind, I kept Cat Rambo’s words emblazoned across my mind, “If you write something of value, they will come.” She may not have uttered those exact words, but I got her meaning, for sure.

The message that I leave with you then, dear readers, is that my words are to be shared, but not coveted. Just as they are no longer mine to keep safe once I’ve clicked “publish,” they shouldn’t be “rehashed” to appear to be someonelse’s. What was once mine is meant to be recycled again, and again, and again. I only ask that its origins be credited to…

hugmamma’s mind, body, and soul….with aloha…hugmamma. 

you can check out Cat Rambo on several sites: www.kittywumpus.net, catrambo.livejournal.com, www.catrambo.com. And if you leave a comment, tell her “hugmamma sent you.”

interests, so varied

As with the surge in readership that I got from “stumbleupon” traffic, my recent posts “put a ‘face’ on the ‘unknown,’ and to a lesser degree, “an expert, in my opinion,” sent views “through the roof.” Where a day or 2 before, I had reached 3,027 views, 2-3 days after these postings, views are up to 3,470. It’s pretty heady to think that my words can draw so many to want to read what I have to say. I must admit to returning to re-reading what I wrote a number of times, trying to discern what it was I said that might have made such an impression. Whatever it was, I’m humbled to know that I struck a chord. I was moved by comments telling me as much, including one from Janice Langbehn and her children.

When I write about a topic, I am intensely passionate about what I’m saying. My feelings are genuine. Those who know me know that I am candid, only given to expressing my honest beliefs. Sometimes it’s integrity gone amuck. I’m not prone to do “battle” in person because my emotions can tend to twist my tongue, better known as being “tongue-tied.” And so I blog.

As a blogger I can say what I want, in a responsible way. Any writer will tell you that readership is key to sustaining the motivation to continue. I’m no different. When I first started, I thought I’d be content merely floating my “voice” out in the internet universe. I published 38 posts on blogger.com, never knowing if they were read, with the exception of a handful of friends who told me they had. So I went in search of another platform from which to launch my voice, and found Oprah.com. 

For the most part, I was a happy blogger in Oprah’s universe. There I honed my writing skills further, and began learning about the technical details. When that site changed its format to being more about OWN, Oprah’s upcoming, new venture, I gradually ceased blogging. I rediscovered my passion for it after taking a Blogging 101 class with Cat Rambo. The information she shared inspired me to look into WordPress.com.

One of the main things Cat told the 9 or 10 of us in class was that we’d need to write “something of value,” whatever that meant to each of us. A guy wanted to start a small business, an Asian woman wanted to post photographs, an Indian woman was a total novice but wanted to share her thoughts and feelings, another woman works for a nonprofit and was looking to increase its visibility. Cat thought sharing the details of my life experiences was an interesting blog. So I bought several “blogging for dummy” books, including “WordPress.com for dummies,” and proceeded down the path leading to the magical, yet mysterious, kingdom of Oz, or Blog-dom.

So here I am, happily residing in a “cottage” of words, offering shelter by the “side of the road” to passersby in need of a boost, as they continue their journey through life. My interests are so varied, that I am passionate about many things. But the mainstay will always be my compassion for people, especially the downtrodden, and more especially, children. Humor and laughter are also very important to me, and is often reflected in my “tongue-in-cheek” style of writing.

I blog, hoping what I post will be enjoyed, but I don’t write to increase my readership stats. Just as some “stumbleupon” readers have continued life’s journey with me, I would welcome having HRC, Johnny Weir, and AARP devotees along for the “ride” as well. But just as my interests are varied, everyone must pursue whatever catches their fancy.

so go chase some “butterflies,” hugs…hugmamma.

in my dreams

Not really. I’m still hunched over my keyboard tweaking all the nooks and crannies of my blog. Can it be that I’m finally having fun? If so, I owe it all to the four blogging for dummies books I’ve been poring over and the 2 day Blogging 101 class I’m attending. I’m not trying to “swim” with the pros; I’m just trying to wade in the kiddie pool. 

I’ts already 1:22 a.m. Should I wait to greet the dawning of the sun, as it tries to break through the grey clouds that have hovered over us for what seems like forever? I don’t think so.  My memory foam mattress is beckoning and my aching back is fully prepared to be enveloped in cushion-like comfort.

aaah…hugmamma