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Tuesday, December 28, 2010

Quest Research Working Toward a Cure


I've watched this video four, maybe five times since I discovered it yesterday. I've shown it to my husband. I've shown it to my children, and now I'm showing it to you. 

What these researchers are doing is nothing short of remarkable and I believe that it will lead the way to an HIV cure. If the opportunity presented itself, with the information I have now, I would volunteer for this clinical trial in a minute. In fact I called Quest Research and spoke with a gentleman on the phone, but was told that because I lived so far away and they already had plenty of volunteers in the Bay City area, chances of them enrolling me were likely slim. Still, they offered to send me more information...and you know what they say, never say never.  

I can wait if I have to. In fairness, this treatment is best served on the people who have already exhausted all other avenues and need it the most. My CD-4 count was over 1,200 my last blood draw, and my virus undetectable. I am healthier than your average "healthy" person!

How is this possible for someone who's been positive for twenty-five years? I don't know. I exercise, take vitamins, and just generally take good care of myself...nothing out of the ordinary. I take HIV medicines intermittently. 1 month on, two months off, on average. I began doing this because of side-effects from the medicines. Although I wouldn't recommend it to anyone, and it's likely that I'll build resistance sooner this way, it's worked well for me these last five years, and thankfully my children are doing equally as well, on a strict regimen of antivirals that keep them healthy and their virus undetectable, and for this I'm exceedingly grateful because as any mother knows, our concern for our children far outweighs our own. 

I would walk through a brick wall if I thought it would facilitate a cure, because more than anything in this world, and what has kept me going strong all these years, is my desire to see my children cured of this disease, and I know in my heart that the day is coming–maybe sooner than we think.






Thursday, December 23, 2010

Quick..make a wish before the wax drips ; )

Charlie loves chocolate cake : )
Did I ever mention that my oldest child was a Christmas baby? Well, she was and that makes the month of December doubly special for our family. 

I was eight months pregnant with Alee when she decided to turn side-ways and stay there. Soon after my Dec. 12th due date came and went, the doctor scheduled me for a Cesarean section...it was the week before Christmas! 

I'll never forget that December morning as Clay and I drove to the hospital, knowing that in just a few short hours we would be holding our child. Naturally, our emotions were riding high; we were scared–Neither of us had ever done this before! And we were excited–a real baby of our own! But most of all, we were just plain exhausted by the time Alee finally arrived. We'd been so preoccupied with getting everything perfect for the baby, that we'd hardly had time to give Christmas a second thought. I'm certain we put up a tree, but I honestly can't remember doing it. What I do remember, as clearly as if it were yesterday, was how it felt to rock my brand new baby girl in my arms, and watch her fall asleep to "Silent Night" playing softly on the stereo in the early hours just before Christmas morning.  Now that is something I'll never forget. She was by far the best Christmas "gift" that Clay and I ever received.   

We almost lost Alee when she was six, but thankfully we got a miracle. Because of new HIV medicines that were developed soon after she became sick, Alee's life was saved and today she can look forward to living a long, full life. And who knows what the next decade has in store for HIV–most likely it will be a cure, but for right now I am grateful for this day, for this Christmas, and I am especially grateful to be celebrating Alee's 20th birthday.  

As we lit the candles on her birthday cake, I told her to make a wish, quick, before the wax dripped, or Charlie pounced...

She laughed, closed her eyes and then blew out the candles. When she stood back up her face was radiant, and she was smiling. 

I couldn't tell you what she wished for, but I will tell you what I wished for–it's what all mothers want for their children–and that's for all her dreams and wishes to come true. Happy 20th Birthday, Alee. I love you!

What are you wishing for this holiday season? Whatever it is, I hope your holidays are filled with wishes come true!
Alee Makes a Wish...

Saturday, December 11, 2010

Live Your Life!

My daughter has always been brave. When she just was a little girl, living in California, we'd go to the beach for a day of fun and I would have to chase her incessantly because she would try to rush straight into the ocean–never mind that the waves were three times bigger than she was. No, that didn't matter to Alee because she was completely fearless. Some things (thankfully) never change. Here's a short clip of Alee, now almost 20, in the EGPAF series titled, "This is HIV. Live your life." 

Disclosing that you have HIV is never easy; not even for someone who's lived with it their whole life, but nothing will ever stop Alee. Not even HIV. I am so proud of my daughter–today, tomorrow, and always... 

Please watch this clip and then share it with your friends!



Wednesday, December 8, 2010

Meet Smoky...


My husband and I recently visited the Tennessee Smoky Mountains and there's a cute story behind this bear! 

For all you animal lovers out there...this one has a happy ending : ) 

Just follow this LINK to my writer's blog to read how "Smoky" got his name. Happy Holidays, everyone!

Monday, December 6, 2010

RedRibbonDiaries Turns Two!

Exactly two years ago this month I signed on with Blogger.com and registered the name RedRibbonDiaries. This is where I "came out" so to speak after living with my disease in secret for twelve long years. Today, I have to admit that I enjoy being somewhat of an open book. Although, I have been keeping one, tiny, little secret from you. I can't tell you everything just yet, but I promise to share what I can! As most of you know these last couple of months have been an exciting time. I finished my novel (after months and months of hard work), signed with a wonderful agent(!) and as of World AIDS Day (How uncanny is that?) received some very positive comments along with a "request to read" the full manuscript from this well respected publisher. That's all that I can reveal right now, but trust that I look forward to sharing more good  news when I can. I want to thank you for following the journey. Your readership, support and comments over the years have meant so much. We've shared stories and laughter–even exchanged a few recipes, but what I appreciate most of all are the amazing friends and remarkable people that I've gotten to know because of this blog. Thank you for following, and please join me in wishing REDRIBBONS Happy Birthday!   

Wednesday, December 1, 2010

REMEMBER

AIDS Memorial Quilt displayed in Washington DC. It represents the 25 million lives that have been lost to AIDS since 1981.

For me, World AIDS Day is a time to remember; It's also a time to hope. I've been HIV positive for over twenty-five years now. I don't often go into how I contracted the virus because even after all these years it's still a difficult subject, but I think that young people, especially, need to be aware of how HIV can (and still does) happen to anyone...even the nice girl next door. I was never promiscuous and I wasn't a drug user; neither was the young man whom I contracted HIV from. I met and fell in love with John Clark III when I was just nineteen. He came from a very respectable, upper-class family who had adopted him as a baby (his birth mother, he confided, had been an addict who'd given him up at birth). 

After a year and a half together John asked me to marry him and I said yes. We'd been engaged for six months when he started to change–We didn't know it, but HIV was quietly taking hold of not only his body, but his mind as well. His behaviors were becoming more and more erratic. He started to lose a lot of weight and his cognitive skills began to decline rapidly. Sometimes, he seemed like a totally different person to me. In hindsight, I now know that it was AIDS related dementia, but at the time I didn't understand what was happening and neither did he. I thought he must be doing drugs and I confronted him. He said he wasn't, but I didn't believe him. We had an argument over it and he told me to have a good life and that I was better off without him. I gave him the ring back and that was the last time I ever saw him. 

A couple years later I learned that he had died of Non-Hodgkin's Lymphoma–a cancer sometimes seen with late-stage AIDS. Did John ever learn the truth? I don't know that answer and I probably never will. What I do know is that back in the mid-eighties HIV was considered a gay disease; doctor's may not have thought to test a young, straight male. Likewise, I never thought that I was at risk for getting it either, but a decade later, after I'd married and started a family, I would learn the devastating truth. I'm here to say that anyone can get AIDS, so even if you don't think you're at risk respect yourself and others and get tested, because until there is a cure, knowing your status and using protection is the only way that we'll halt the spread of this disease. 

You probably didn't know it, but women are more likely to be infected with HIV by our male partners than the other way around. If you've ever had unprotected sex, you've put yourself at risk. Get tested.  

It took me many years to find closure, but I have. I'm very fortunate in that my husband never did contract HIV. I wish that I could say the same for our children–two who are biological and one adopted–all born with HIV.  Our family has been through a lot because of AIDS and we consider ourselves lucky to be alive and healthy today. I have forgiven John. Whether he knew, or didn't know is no longer important. I do wish that I'd known that he was dying so that I could have been a better friend. His name was John Clark III.... He was kind, handsome and talented, and he was just one of the 25 million, thus far, who have lost their life to AIDS.   

Today, December 1st, is a day to remember. What does World AIDS Day mean to you?  This World AIDS Day I hope that you'll join me in the fight against HIV/AIDS. Together, we can halt this disease, and one day put an end to this pandemic once and for all.    

Wednesday, November 24, 2010

SO Thankful : )


Today, I'm cleaning house and getting ready for Thanksgiving. I still have a few loads of laundry to catch up and a ton of shopping to do! My husband wonders why I go to all the trouble since we always have Thanksgiving at my brother-in-law's house, and I have to admit I've questioned this myself. I mean, seriously ... Putting on a "Turkey Day" feast for my measly clan does seem like a lot of work. There's a big, fat turkey that requires basting, sweet-potatoes that demand to be whisked and fluffed. I suppose it is a lot of "to-do" for just my little family of five, especially when we're having such a big shin-dig with the cousins, aunts, uncles...the whole family...

So what! I don't care!! I'm making my own turkey, dammit! I guess I'm a tad eccentric in that I cannot pass up the joyous tears that come from endlessly chopping white onions ; ) or the delectable smell of sage and celery simmering on the stove, not to mention the cold, dry left-overs. Can't live without those. So, yes, I will be scampering down the grocery aisles today, on the prowl for my very own little "Butterball," and even though I won't be cooking it until after Thanksgiving, trust that I'll be enjoying myself.

All jokes aside, I know it doesn't really matter whether or not I make a turkey; the real highlight of Thanksgiving is that my family is healthy, happy, and together to celebrate the day. For that, I am forever thankful.

I want to leave you with one of my favorite quotes, by American Pulitzer Prize winning author Willa Sibert Cather, that goes like this "Where there is great love, there are always miracles." Such truth in so few words... 

So with that, my HOPE for you and yours this Thanksgiving is that the DAY be filled with LOVE, family and good friends. Have a Healthy and Happy Thanksgiving, friends!



Sunday, October 31, 2010

Three Pumpkins

                                          Three unsuspecting pumpkins...
Two industrious boys 
                          And a super-turbo "Deluxe" carving saw!
          I did what any sane parent would... RAN for cover ; )

Sunday, October 24, 2010

A Mother's Fear

I've been dancing around this...not wanting to post about it, but I think I need to. Something happened this month that I never imagined would and it was very frightening for everyone involved. Yonas, who's just eight, was in PE class at his elementary school; they were playing ball when he and another little boy both went to catch the ball at the same time and they ended up colliding heads...

The phone rang and it was Yonas's school on the other end. It's the call that a mother, let alone a mother with a positive child never wants to get. "Ma'm, you need to come to the school and get Yonas. There's been an accident and it looks like he's going to need stitches."

It gets worse. The child that he collided with also needed to go to the hospital. The accident had left both of them with open wounds, Yonas's just above the eye and the other little boy's was the forehead. My heart stopped. I really never imagined something like this would ever happen. Things like this only happen in the movies. I mean, what are the chances? I'll answer. Slim, but not impossible.

Yonas's school, who are (thankfully) aware of his HIV status, handled everything perfectly. After speaking with the principle and councelor we all decided, even though the probability of HIV transmission was very low, that we should tell the other little boy's parents that Yonas was HIV positive. After all, if the situation were reversed, I'd want to know.

The next call I made was to the little boy's mom. What do you say to a mom who's facing a nightmare like this with her child? I tried to reassure her. Told her her both kids had most likely hit the ground before either one had even started bleeding, told her Yonas was undetectable, meaning the virus in his blood is so low that transmission is highly improbable; I gave her phone numbers and tried to put her in touch with the best ID doctors I know, but I don't think any of this brought her much solace.

Although we did all that we could to assure them (and ourselves) you can imagine there was still a lot of concern, on both sides. There were doctor visits and numerous blood drawings for her child. The pediatric doctor the other mom had taken her son to had never dealt with HIV, so she called the CDC who recommended antiviral therapy as a precautionary measure. For peace of mind, the family opted to put their child on a course of heavy antivirals for three months. This seems like a lot, but I can understand needing that added assurance.

My heart goes out to this mom and this family. These medicines aren't easy to take by any means, and although I know with certainty that her child will be fine...still, this did happen and it has left me feeling pretty helpless.

I'm just so thankful for how this family and Yonas's school handled what could have been such a messy situation with the utmost care and regard for everyone involved.

It's only been three years since our family decided to disclose (read POZ story HERE) and I think about what a blessing that's been and how different this situation may have turned out had we still been hiding our status ... I do believe that things happen for a reason.

That woman's little boy will be fine. He will take the antivirals and then get tested twice more to be certain of a negative result, and then they will put this behind them. There will be no mass hysteria or parents up in arms that a child with HIV has been allowed to attend public school and we'll just go on as before with an even greater appreciation in our hearts for our community and the wonderful school system we have here. Ryan White is a young man whose story and life's work lives inside my heart. I think of him often and how what he went through changed a nation. Somewhere, he's looking down on this with reverence, I'm sure.

And Yonas, my spirited little guy? He'll be fine too–although, he has decided that the next time there's a ball in question–the other kid can have it!

Friday, October 22, 2010

Jack-O-Lantern Cookies

It's no big secret around our house that we love Halloween. Ghosts, goblins and little witches–I mean what's not to love, right? 

The kids and I pulled our the big box marked "Halloween Stuff" almost the second the calender allowed. This year we decorated with tombstones, ghosts and goblins ... SCAREY : ) Well, we tried anyway.

I think my favorite part of all is seeing what the kids decide to dress up as. I'll be sure to post pics. They've come up with some pretty clever costumes! 

But Halloween isn't Halloween until you've baked pumpkin seeds and cookies. Here's a great cookie recipe I thought I'd share. Have a happy Halloween, everyone!

Jack-O-Lantern Cookies
2 1/2
cups packed brown sugar
1
cup butter or margarine, softened
1/2
cup shortening
2
eggs
4
cups Gold Medal® all-purpose flour
4
teaspoons pumpkin pie spice
2
teaspoons baking powder
1/2
teaspoon salt
Assorted candies, nuts and miniature semisweet chocolate chips, if desired
Frosting
6
cups powdered sugar
2/3
cup butter or margarine, softened
1/3
cup frozen (thawed) orange juice concentrate
Green, yellow and red food colors

  1. Heat oven to 375°F. In large bowl, mix brown sugar, 1 cup butter, the shortening and eggs until well blended. Stir in flour, pumpkin pie spice, baking powder and salt.
  2. On lightly floured surface, roll 1/4 of dough at a time to 1/4-inch thickness. (Keep remaining dough refrigerated until ready to roll.) Cut with 3-inch pumpkin-shaped or round cookie cutter. Place on ungreased cookie sheets.
  3. Bake 8 to 10 minutes or until light brown. Remove from cookie sheets to cooling racks. Cool completely, about 30 minutes.
  4. In large bowl, mix powdered sugar and 2/3 cup butter until smooth. Stir in juice concentrate. Place 1/3 cup frosting in small bowl; add green food color until desired color for stems. To remaining frosting, add 2 drops yellow food color for every 1 drop red food color for desired shade of orange. Generously frost cookies with orange frosting. Frost stems with green frosting. Make jack-o'-lantern faces with candies.
Makes About 4 dozen cookies


Monday, September 27, 2010

The Road to HOPE...

Louisville's annual 5K  AIDS WALK drew a fantastic crowd yesterday. My family and I got there a couple of hours early to register and at 3pm on the dot, the red ribbon was cut and off we went. 

Louisville's AIDS walk is truly amazing. If you've never been, it's worth the trip to attend. They shut down all traffic, and the walk itself takes place over the 2nd Street Bridge that crosses from Louisville into Indiana. The view from the bridge is breathtaking! You feel like you're on top of the world surrounded by the city ... and the cool breeze washing off the river doesn't hurt either. 

It's not every day that you get the opportunity to walk across the 2nd Street Bridge and as I took those first steps up high above the river I was a bit awe struck by the whole experience of it. Up above stretched this incredible blue sky and arching beams of steel, and straight ahead I could see an AIDS ribbon with HOPE spelled across in big, white letters. For me it was a moment–a moment to feel gratitude and take stock of the past as well as the future. We've come so far in recent months and I know that each step we take in hope is just one step closer to a cure. HOPE is really here–Believe it. 

Thursday, September 9, 2010

Monday, August 16, 2010

HIV-Keeping it Safe.

I just read this article about the German pop-star Nadia Benaissa, who was in court today facing charges of aggravated assault for infecting a man with HIV. Not only did she NOT disclose her HIV status to multiple partners, but she also engaged in unprotected sex with them. This story really bothers me. How does a beautiful, talented, seemingly intelligent woman allow something like this to happen, and why are young people still so afraid to talk about HIV and safe sex? 

I have a daughter who is nineteen. She's an honors student, holds a part-time job, is beautiful, smart, and yes, HIV positive. Born with the disease, she came to me at just sixteen and told me that she wanted to disclose her status. She came out to friends, school and our whole community.  That took a lot of courage. Did she lose dates or lose friends because she chose to reveal her status? No, she did not. She still went to prom and she still went out on dates. She'll tell you herself that she's not ready to have sex, but you can bet that when she is, she and her partner will have the maturity and the conscience to talk about HIV and safe sex first. 

Although Ms. Binaissa's choices are unacceptable to me, I don't judge her, nor can I condone her actions. When she was asked why she did it, she admitted that she didn't think that she could infect her partners. I believe that she's telling the truth about that, but is that a good enough reason not to tell... Not to use protection? No, obviously it's not and that's why she's going to do jail time, and someone she had sex with is now going to have to live with HIV for the rest of his life. What she did was shocking and sad. What was she so afraid of? Was she worried that revealing her status would make her less attractive or less of a person in her partner’s eyes? If anything, I think disclosing would have shown courage and the care she had for her partner... I think it would have made her a hero.   

HIV and safe sex: Talk about it. Don't be afraid. And if you're in a relationship where you can't talk about it then maybe you're just not ready to take that step.  

Thursday, August 12, 2010

Last Days of Summer...


Summer... Hard to believe it's really coming to an end, especially when the heat index today reached a whopping 113! 

Even as hot as it's been, we've had a great summer. Between the late-night swims at our local pool, a trip to the California coast, and a little adventure on the river, I'm happy to say that we've managed to have fun regardless of this sweltering heat.  

I hope your summer has been a blast, too. Is it just me or does it feel like summer always goes too fast? Seems like we barely got started and already it's time for the boys to replace their swim gear with backpacks and books! They are already into their first week of school, and as eager as I am to say goodbye heat and hello to fall...I'll always cherish these summer days. 
 
Nothing says "happy" like a yellow mushroom dumping water on your head : )

Thursday, August 5, 2010

Born With HIV: Interview with Jake Glaser


I just watched this video. It is SO powerful and so well done. Jake Glaser has grown-up to be such an incredible young man with a message you'll want hear and then share.  

Tuesday, July 27, 2010

A Story Worth Telling...


I want to share a book with you that greatly impacted my life. The book is, In the Absence of Angels by Elizabeth Glaser. It's the story of the Glaser family and their harrowing journey with AIDS. This book was first released in 1991, but I didn't find it until 1996, only a few weeks after my children and I had been diagnosed with AIDS. If you don't believe in angels... Well, maybe you should.

My world was collapsing in 1996. My children had AIDS, Alee'd had a stroke, and the medicines we'd just started taking were toxic. I was lost, in a deep state of sadness aimlessly wondering the aisles of a small rural library in Kentucky. I wasn't looking for any one book, just trying to avert my mind off my terrible situation. I found myself in the library's small biography section, my fingers tracing across a line of book spines, when I stopped. Right at eye-level was Elizabeth's book. I pulled it off the shelf, opened it to a random page and started reading. It was the chapter about Ariel's death at the age of seven. My Alee at the time was six. Overcome with emotion, I closed the book and somehow got through the check-out and to my car before bursting into tears.

Once safe in the privacy of my home I read the book in a matter of hours. Her words, her beautiful story, stay with me to this day. It also pointed me toward The Elizabeth Glaser Pediatric AIDS Foundation, an organization that has been like a steadfast rock in a bumpy sea for my family and I. For those of you who don't know, before Elizabeth passed away she, along with two of her closest friends, started The Elizabeth Glaser Pediatric AIDS Foundation, an organization dedicated to stopping mother to infant transmission that's still going strong today.

The similarities between Elizabeth's story and mine are uncanny. We share the same birthday, both our husbands remained HIV-negative, we both had two children (girl first and a boy second), and we both unknowingly contracted HIV and passed the virus onto our children. Her story touched me in a way that no other can. I'm not the only person who Elizabeth's book has touched. I recently became acquainted with a wonderful young woman, Courtney Sheinmel, who is the author of a book titled, Positively, among others. Please take a moment to read how Elizabeth's book had a profound effect on Courtney, and how this author actually came to meet Elizabeth one life changing summer when she was just fourteen.

Elizabeth and Ariel aren't here today, and that hurts and always will, but everything they did in the short time they were here on this earth continues to blossom and that means something. I like to think that Elizabeth is my angel, and that somewhere, right now, she is smiling.

Elizabeth's book, In the Absence of Angels can be found on Amazon.com.

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Friday, July 9, 2010

Why I didn't appear on Oprah, not once, but twice! True Story.

Age 4...Cowgirl at Heart

I was asked to go on the Oprah show, not once, but twice! True story.
The day had started much like any other... I'm soaking in the tub, eyes closed, daydreaming when I get this flash of me, on the Oprah Show, wearing a pair of extremely HOT, as in awesome, pair of brown suede boots ( with a wrap around sweater dress–same fabulous color) and I'm saying something real clever–like, "I want to thank the academy for this incredible award!"

Then a crashing noise (one of the kids bounces a soccer ball against the bathroom door) brings me back to real life. Okay, hang tight with me–this story gets better. I put on my robe, pad down to the family room where Hubby is watching CNN. I say to Clay, "I just dreamt I was on Oprah...you should have seen my boots."

No kidding, two seconds later... PHONE RINGS! Caller ID says, Chicago. I panic. I reach for it. My hand freezes.
Clay says, "What's the matter? Answer it."
I say. "I can't. It's Oprah."
He gives me one of those "That's crazy, but you've said crazier" kind of looks. "Answer it," he says, again.
I shake my head. Answering machine picks up, "Leave a message at the beep....BEEEEP!"
Friendly voice, "Hello! This is so and so, from Harpo Studios. Could you give us a call back, please. We'd like to talk with you about being on The Oprah Show." Click, she hangs up and about this time I FAINT.
Now, Clay's really excited. "Call her back! Call her back!"

You have to know me...I do not particularly enjoy the limelight. I'm a writer. I don't even like to talk on the phone let alone appear on talk shows–unless it's for a REALLY good cause...

Well, it so happens that AIDS and raising awareness falls into the REALLY good cause category so long story short, I swallowed my fear, called the lady back and ultimately agreed to go on the show. I was told that there would be four or five other women, all of whom, like me, were HIV positive. There was very little time to prepare, less than a week. So, naturally, my first stop was straight to the mall in search of an Oprah worthy dress and those brown suede boots I'd imagined myself wearing in my dream. Two-hours and one drained pocket-book later, I'd found an outfit of sorts, although nothing like what I'd envisioned, and no boots, but I was as ready as it was going to get.

Now for the crasher: Two days before the show, nice producer lady phones. It seemed there had been some last minute changes to the focus of the show and I no longer fit. The show's focus would now be more on young positive women and the dating scene. I was married and too old. She didn't say it in those exact words, but....whatever the case, I was O-U-T, out. Actually, I breathed a big sigh of relief.

Was I secretly hoping for a couple tickets to go see the show? I was...Your typical latchkey kid, I started watching The Oprah Show way back in the eighties. I was only twelve, but loved her! While my mom worked eleven-hour, sometimes sixteen-hour days to support us, much of my time was spent cooped up in a small apartment in Pocatello, Idaho. Everyday, from 4-5 Oprah became sort of like my surrogate mom. I never missed a show! While my mom may have been the one to put food on the table, the Oprah Show, in essence, fed my soul; Her shows and guests were often inspiring as was Oprah herself. I especially enjoyed the shows that talked about living your best life and spiritual connections. So, yeah, I guess you could say I'm a true fan. Unfortunately, the tickets never showed.

The second time (yes, there was a second time) I was asked to go on the O show, it was to help promote a writer friend's memoir, but the details were fairly vague. We didn't know the what, when or where and although I'd have liked to have been able to say yes, I was getting my girl ready to head off to college and the timing just wasn't right.

So, as most of you know, Oprah is ending the show in late 2011. My chances of ever being on the show or sitting in the audience, or even perhaps having her praise my novel in front of millions are growing dim. *Big melodramatic sigh*

But seriously, as much as I love Oprah and as nice as it would be to have my novel propped in her hands, most new authors (self included) will never get that chance. Does that mean your book won't be a best seller? No, it does not. What it means is that we, as writers, have one responsibility and that's to write a book that people want to read. That's the number one requirement toward success in the writing business. I've read an awfully lot of books lately that have been chuck full of hype–the next BIG American novel (supposedly) and I've been sorely dissapointed. I'm not giving up though. With my new IBook feature I can get all sorts of sample pages to read before I commit to buy. But honestly, I think the best tried-and-true way to find a good book is by word of mouth. It's been working for ages! So friends, if you've read a really good book lately ... please do tell us about it!


Monday, July 5, 2010

Things You'll Only Find in Kentucky

A "distillery" in your Uncle Buddy's backyard. 
Or a little fine dining on the side of the road. 
There are some things that you will only find here in the South... An antique "distillery" in your Uncle Buddy's shed...a "HeeHaw shack serving up "grub" on the side of the road,  or how about a coin operating laundrymat/tan while-U-wait called the Suds and Bronze?  You know I couldn't possibly make these things up ; ) 

A California girl at heart, I will always be a little in awe of Kentucky. It's got a "flavor" and character like no other place I've lived, and the people are some of the nicest that you'll ever meet. It's been a great place to live these last fifteen years, I must say. 

And what a beautiful day it is today; one of those especially rare mornings, not often seen in July, where the temps are still below eighty, and here it is at almost 10 AM! From the sounds of the racket outside, the cicadas (a large homopterous insect with bulging red eyes and long wings) are restless and so am I. It's days like this that put me in the mood to go exploring. So, after a near non-stop writing debauch yesterday (Somebody, please pull me away from the computer keys!) followed by a hair-raising night of illegal fireworks exploding over my head today I'm taking a little hiatus. So, off we go–the kids, the hubby, and I–for a little scenic drive, and who knows? Maybe if we're lucky we'll run into a little "Hee-Haw" shack somewhere along the side of the road that's offering up some interesting fair. Enjoy the rest of your weekend, friends...and y'all come back now, ya here ; ) 

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Tuesday, June 22, 2010

A Time For Heroes 2010


This year, "A Time For Heroes" raised 1.3 million dollars to help in the fight against HIV/AIDS. Their ultimate goal is to halt mother to infant transmission throughout the world. It's a big bite to chew but if anyone can do this, it will be them. Because of early testing during pregnancy and access to anti-viral medicines mother to infant transmission is now quite rare here in America, but unfortunately this is not the case in other parts of the world where infants are still being born at record numbers infected with HIV. It's a vicious cycle that needs to stop. 

Mitchell, my fourteen-year-old son spoke at this year's event with his sister and brother by his side. As he recounted our family's struggle and ultimate triumph over HIV I couldn't have been prouder. It was a shining moment for our family and an important step of courage for Mitch. 

We've only been open about our disease for a couple of years now. Coming out was a big step for our family, one that we gave much thought to before we openly disclosed. If you are also considering disclosure and children are involved, here are some things that helped us tremendously:

1) If you're going to come out, don't tell just a few people–it's better to come out big! This was perhaps the best bit of advice given to me by a counselor at St. Jude's Children Hospital. When you come out big, it's a one-time shot; everybody knows, therefore rumors and gossip are squelched.   

2) Disclose to your child's school and offer to speak and educate about HIV. The Red Cross offers a wonderful educational pamphlet about HIV in schools that proved to be a valuable tool for parents and staff. 

3) Make sure that you and your children have a close network of support around you. It's important to have family and friends who know about your situation and wholly accept your child regardless of HIV.
 
As a parent, it was very important to me that my children grow up without the shame, or the undue stigmas that are sometimes associated with having HIV, and I knew that in order for them to do that, it was up to me to show them that they had nothing to be ashamed of. It took a lot for me to get there, but get there we did. And the acceptance that we've received from our schools, friends and community have been overwhelming. There isn't a day that goes by that I'm not filled with gratitude. It's because of people like you, who care, that my children have been made whole. 

It is always my hope that by sharing our story we are able to help others who may be grappling with issues surrounding HIV/AIDS. I'm here to say that you can live a normal life...people will love you regardless, so when given the opportunity to use your life, your hardships and victories to make a difference–do not let fear dictate–let the choice be yours alone.  

Tuesday, June 8, 2010

School's OUT for SUMMER : )

Check out my gangster...er, I mean son at graduation!  Eighth grade graduation went off smoothly. This mom even held it together–No ugly cry which is always a big achievement : ) 
So summer is officially underway in our household and we're lovin' every minute of it. With all this free time the kids and I now have opportunities galore to explore new interests and hobbies. The kiddos have been saving up their allowances for a trip to...The Walmart! I know, I know...but give them a cart and a little cash and you'd think I'd just dropped them at Disneyland...they love it. So, anyway I set them loose and did they ever have fun. After much deliberation, Yonas picked out a skateboard kit. Not the fully assembled kind, but the kind you have to have a mechanical degree to put together...Well, the board was nearly as tall as he is, but he was smitten and there was no way of talking him out of it. Big brother, who happens to be great with his hands, helped him put it together and off he went!

Mitchell, who I swear has grown a foot this year, went for the barbells and weights. I love seeing my young man take an interest in fitness. He is growing up on me. It's still strange looking up at my fourteen- year-old. When his voice changed...it took me forever to get used to it. I'd hear this low, manly voice coming from another room and think we had company.  

Alee, my little artist, has taken up the loom AND crocheting. She picked up a whole slue of colorful yarns and different sized hooks. She's already made the cutest hat you ever saw and now I'm trying to talk her into making MOM one of those awesome knitted purses you only find at art festivals. If she's reading this (that was a hint, Alee).  

Me? I dusted the cobwebs off of my roller-blades, and finally finished reading The Mercy Of Thin Air while sitting under an umbrella in my backyard...a little slice of heaven, right there.

So far, our summer is off to a wonderful start! I hope yours is too and that you find some lazy days to read that book or pursue that hobby you've been wanting to try. 

Saturday, June 5, 2010

Encouraging!

http://cbs5.com/video/?id=65956%40kpix.dayport.com
Technically challenged here...can't figure out how to post the video so pasting the link. Watch it and (try your best not to) weep. Then come back here! 
This is so encouraging that I'm still trying to wrap my thoughts and emotions around it, you know? Does this mean that I may truly see my children cured? I know that the answer is, YES!
All sorts of things are going through my head right now. I'm projecting four years into the future, when these trials will be fully engaged and underway. Our oldest child will have just graduated college, unless she decides to go for her masters which wouldn't surprise me. She'll just be embarking on her adult life, still young with so much ahead of her at just twenty-three. Our middle son will be graduating high-school and Yonas, our youngest...he will be on the brink of puberty. And in their bright, beautiful futures is THE CURE. I've dreamt of this. I've prayed for this and now I finally believe I will see this day. On my desk I have a small framed picture of a beautiful sunrise with a quote across the top. I've had it there for thirteen years. It reads, "Believe, dream, will...and put it in the hands of God."
That's all any of us can do, really. 
Three cheers for Dr. Hutter and his remarkable insight that will lead us toward a cure one day soon. 

Saturday, May 22, 2010

The Little Things


It's game night here in Kentucky and we take our Monopoly VERY seriously. Okay, maybe not THAT seriously, but I do have to say that I'm really enjoying seeing the kids put down all the electronics to enjoy a little old-fashioned, game night fun just like I did when I was a kid : ) 

Only when I was a kid I don't ever remember being distracted by hot air balloons skirting across the sky. We watched two of them float on past until they dipped down below the tree line and then we headed back inside to our game.   
I've gotten a head start on gardening this year. My pepper plant and strawberry patch are already taking off and summer in finally just around the corner! We have exactly six school days left before summer vacation officially starts : ) and yes, I'm counting down the days! This year has gone by so quickly that it seems like Clay and I have hardly had time to catch our breath. We're really looking forward to summer break and the kids being home, a little R & R, and definitely more game nights just like tonight. It truly is the little things that count... 


Sunday, May 16, 2010

Where's The Cure?

It's a good question, isn't it?  amfAR is working hard to find the answer. May 11, 2010–amfAR, The Foundation for AIDS Research, has announced a groundbreaking collaborative effort to pursue HIV eradication.  

Friday, May 14, 2010

My Secret...

                                              Tell people you're a writer, or an AIDS advocate and the response is always a good one. Tell them you make lampshades, and watch their eyes seriously roll to the back of their head. "Lampshades, huh? Oh, that's nice," and they quickly change the subject. I've learned that it's definitely not something to broadcast at cocktail parties, or *clears throat* my blog, for that matter, but today I just figured why not get it off my chest? So here's my confession, "My name is Suzan, and when I'm not writing... I like to make lampshades." *Big sigh* Hey! That felt pretty good. I've even posted a couple pictures of some favorite shades. The one above was made from a silk embroidered Japanese tablecloth I purchased for five bucks on Ebay.

My biggest claim to lampshade fame? A few years ago, I was thrilled to have one of my shades (a little Art-Deco number) place third in a contest and it was later displayed at the American Sewing and Art Expo. I'm especially drawn to period lighting from the twenties and thirties.  After my husband replaces the old wiring I go to work on creating the perfect lamp shade. Sometimes I use antique fabrics and appliques. Each fabric panel is sewn by hand, and just one of these little beauties takes about a month to complete. But the results are always worth it! 

A beautiful floor lamp from the twenties.
Here's the shade I made for it! One of my favorites...

                                    A lampshade in the making : )
The moral of the story? There isn't one...Have fun today and don't forget to give in to your creative passions no matter how quirky they may seem.  

“Creativity is contagious. Pass it on.” — Albert Einstein

Sunday, May 9, 2010

One Lucky Mama ; )

Mother's Day is finally here and I'm one lucky Mama : )  
Last night, we were up late watching Avatar (If you've not seen it yet, you've got to...is really great) well, as soon as midnight hit, the kids declared that it was officially Mother's Day, "Now let the hugs begin!!" Big bear hugs from my babes...that was just the start. This morning they gave me something I really wanted (and shamelessly hinted for), one of those hanging upside down tomato plant things. It's AWESOME. Too heavy to hang on the iron hook they got though, so we got a little creative. 
The ice-storm of 'o9 killed a very big cedar tree in our back yard. Well, we've procrastinated and not cut it down and as it turns out it is perfect for "hanging" things, like colorful bird houses and yes, my new hanging tomato planter. I think I'll add a few "hanging" pepper plants, too. It's still a work in progress, but is turning out to be pretty cool so I'll post pics when I'm all done. 
Now, we're off to do a little grocery shopping for a very sweet, and very special eighty-year-old lady...my mom.  She is getting a hanging tomato plant too, BTW.  

When we get back home, I've got a special movie night planned with three awesome kids and one hunky husband. We're going to snuggle on the couch in our PJ's, eat popcorn and watch old movies. I can't wait. Wishing all you mom's (and families) out there a wonderful day filled with lots of love and big bear hugs!

Friday, May 7, 2010

Today is World AIDS Orphans Day

This video is difficult for me to watch, but I think it's important for us to see what HIV anti-viral medicines can do for even the sickest children. I've seen this happen first hand, when my own children where literally brought back to me... I hope you take a moment to watch this miracle.


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Wednesday, May 5, 2010

WORLD AIDS ORPHANS DAY



May 7th is World AIDS Orphans Day. It's hard to comprehend the numbers, but it's estimated that there are currently 15 million children worldwide orphaned by AIDS. Those numbers are expected to jump to a staggering 20 million by the year 2010. As daunting as this crisis is we are continuing to make strides in the right direction. There is no greater gift for these children than the gift of hope. There are a lot of great organizations out there, and they're working hard to help these children survive. The Elizabeth Glaser Pediatric AIDS Foundation is just one of them. It's a great place to start.  

My son, Yonas, was an orphan. That's his picture above. It was taken shortly before he came home to America. My son was fortunate in that after he lost his family to AIDS, he was taken in and well cared for by an orphanage for positive kids in Ethiopia called  AHOPE For Children .  Yonas now has a family who loves him dearly, and he has hope for his future. The great news is that many of these children, orphaned and living with HIV, are now being adopted. Hope–it's just a word–until you feel it, and then "hope" becomes a real and powerful thing! To learn more about adoption and what its really like to raise a child with HIV check out my story published in Adoption Today

Yonas on the "green"
   


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Saturday, May 1, 2010

Derby Daze

Hey Ma! What's that up in the sky? Is it a bird...is it a plane? 
It's three very cool planes! Ever wonder what folks do in Kentucky for fun? Well, I can't speak for everyone, but I do know that for us Derby week is an absolute blast. Here are just a few highlights from our week that started out with an amazing airshow.
 These fighter jets from WWII were really something to see!
Can't forget the fire-works afterward...
And the balloon races are pretty unforgettable, as is the quest to find the perfect Derby hat... Or not.
And before you know it...
The fastest two-minutes in sports is over, but boy was it ever fun and I can't wait to do it again next year : )

Thursday, April 22, 2010

Waiting on the Sunrise...

There are few constants in our ever changing world, but one thing's for sure, no matter how dark the night...the sun will always rise. This particular photo was taken in Africa. Beautiful, isn't it? I often get up early just to watch the sun rise. It's when I feel closest to God. You can find Him anywhere–be it in the beauty of  the sky, the trees or even in the eyes of a kind soul. A sunrise, something we so easily take for granted offers up something extraordinary–the promise of a new day–a day that will hopefully bring us one step closer to whatever dream, need  or answer we may be searching for.  

I often get e-mails from people who are thinking of adopting a positive child, and sometimes I receive a heart-felt note from someone who's been newly diagnosed with AIDS. They say that I offer them hope because my life seems so normal and happy. I am happy. This surprises even me sometimes. True, life has it's ups and downs and more than likely all of us will at one point or another face some sort of "life challenge." I know I have. There was a time when my kids were very sick that my heart hurt so badly that I really wasn't sure that I was strong enough. Luckily, that's where family, friends and faith usually pick-up where we ourselves drop off...lifting us up and moving us forward. 

Thirteen years ago I made a conscious decision. I decided that HIV had taken enough from me, I wasn't going to let it steal my joy or ruin one prized moment that I had left with my children or the people I loved. Thirteen years ago, I also found hope; hope for one more good year, hope that my children would grow up, and now I hold hope for a cure. HOPE. Let that word sink in, and then reach for it because it's stronger than fear, stronger than a bad medical report, stronger than anything bad that can come up against you. And when you have hope, miracles happen. Thanks to research and people who refused to give up today we are making great strides toward curing diseases that were previously thought incurable–HIV being one of them.  

My life is not perfect. My children and I still have HIV. We still have to take medicine every day to keep the virus undetectable. But here's the truth; life doesn't have to be perfect to be joyful and purposeful. You can be utterly flawed and your true friends will still love you, go figure! A good day isn't always one filled with sunshine and ease. Sometimes, a good day can come between ragged breaths and tears; between life's inequities and unjust circumstance. A beautiful moment...it can last a lifetime or just a heartbeat. It's for us to decide. 

Today, no matter what your challenge surround yourself with hope, love and sunrises...it's what sustains us all.     


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Thursday, April 15, 2010

The Laundry Can Wait...

What to do on a Wednesday afternoon? LOTS, I'm sure, if you're a busy mom like I am. Hmmm, let's see...  My lawn is in desperate need of a good mowing, I have a laundry basket growing as high as Mt. Everest calling my name, not to mention a to-do list that grows longer much quicker than shorter, but you know what? All that stuff can wait because the way I see it my kids will only be kids for so long and I want to enjoy them. So yesterday, my husband and I put life's duties on hold and surprised the boys after school with an afternoon of golf. 
The weather was gorgeous and although I'm not much of a golfer, I do drive a pretty mean cart. The boys? Well, you couldn't wipe the smiles off their faces. We had a great time, and guess what? The laundry didn't go anywhere. Nope, it was still waiting for me when we got home  ; )  
                                  
                                    A waterfall on the ninth hole
Golf Carts and winding roads... Great practise for when he gets his driver's license in a couple years.