Sunday, January 1, 2017
I get pretty emotional when I think about the early days. They were difficult. The medicines were many and they came with side-effects. Today, things are good, but they can still be better.
This World AIDS Day I am thankful for so many things, but I am especially thankful for the many doctors and researchers out there who are working to end HIV/AIDS, and mother to infant transmission all around the world. They are true rock stars in my eyes.
Hold on to hope. Educate yourself. Get tested. Get involved, and perhaps most of all BELIEVE that we will one day see the cure for AIDS.
To learn more, tune to WNYC The Takeaway (9:30am today) to listen to myself and leading pediatric expert Dr. Donna Futterman talk about recent advances made in the treatment and prevention of pediatric AIDS.
Tuesday, September 20, 2016
When I first began writing Red Ribbon Diaries, my children were small. I was a new adoptive mom, juggling life, kids, and a career without so much as a compass to keep me pointed in the right direction. But you know what? There is no one right direction when you're a mom. You have to take a multitude of turns, some of them hard lefts with your foot mashed on the gas in front of oncoming traffic! But no matter the road, you do what's in the best interest of your kids. Am I right? That's just what moms do.
I am a lucky mom. I've been blessed with chocolate face kisses, sticky high-fives from a jelly-fingered two-year-old, bleacher-butt, gray hairs, late night, teenage hellion, God-loving, walking down the aisle, tears in my eyes OMG that beautiful bride is my daughter...moments. Thank you, God, for those moments.
Should your path lead you here, you'll find many stories, some happy and some sad, about my family and about my life. HIV isn't an easy disease to bear at any age, let alone grow up with, and this blog became a wonderful place for us to share our story. This blog gave us a voice--a place to laugh, and even cry if we needed to, but perhaps most importantly, this blog became a source of inspiration to so many people. The letters and support that have poured in over the years have meant so much to our family. Thank you!
I hope you enjoy the stories I share here and find within them something to take with you on your own journey of love and miracles.
Tuesday, July 5, 2016
Wednesday, March 16, 2016
Tuesday, January 5, 2016
Monday, November 30, 2015
Wednesday, February 25, 2015
Monday, December 1, 2014
The clock on the mantle glowed 6:25am as I took a sip of java and then lit all seven candles in prayer.
Today is World AIDS Day, a time of reflection and a time for raising awareness.
Perhaps you know someone with HIV or have lost a loved one to AIDS. That’s why you care. Maybe your life depends on a cure. That’s why you care. Maybe you’re a research scientist working day in and day out to make a difference, to one day find a cure. You care. Maybe you’re an orphaned child with big dreams and all your life you’ve been living with AIDS because your mother never knew she had it. The world cares. Maybe you're a young man or woman living with HIV in secret because you’re afraid that no one will care. Know that someone cares.
Friday, February 28, 2014
Tuesday, February 18, 2014
Tuesday, December 3, 2013
Monday, October 14, 2013
This year marked the 20th annual AIDS WALK for Louisville! We couldn't have asked for a better day and I have many people to thank for making this day possible. A big thanks to Brad Hampton, the Walk's Event Director, for providing a golf cart for my children, so that they were able to participate in Louisville's AIDS Walk for the very first time. I can't tell you how special that made the day for my husband and I.
I also have to give a shout-out to Monkey Drive Screen printing for putting a rush on our T-shirts. They turned out A-mazing! But the biggest thanks of all goes to my husband, for just being the man and husband that you are, and for making "impossible" things possible. It's because of your determination and refusal to ever give up that we are healthy and well today. I love you.
Another big first was viewing a portion of the AIDS Memorial Quilt. I cannot even begin to describe the feeling that it evokes. Yes, sadness, but also peace, love and an incredible spirit from those whose lives each square represents. A few minutes before the walk began, I noticed that Yonas, my eleven-year-old, had strayed from the pack and wondered over to The Great Lawn, a grassy area where pieces of the AIDS Memorial Quilt were on display. I walked over to him, and together we walked the aisles, viewing the names and precious keepsakes sewn into the fabric squares. Suddenly Yonas stopped.
"Hey Mom." Yonas reached my hand. "Look at this one," he said. The quilted square he pointed to was that of four white doves in flight that circled a poem titled, "White Wing Doves."
To be just like the white wing dove
With a spirit that flys so wild and free
Even though all our fears and pain
We must find and get through within our soul
Our spirit inside tries hard to just let it be
Even all the tears and sorrows we'll have for life
The spirit will find the peace from within
So I pray to you dear Lord to please
Bless all spirits to be like white wing doves
With a blessing forever to fly so free
Just spread you wings.
~Michael D'Wayne Arder
I thought of my son as he read this poem out loud, and how ironic that his name, Yonas, in his native language (Amharic) means "White Dove," and it was all I could do to hold back my tears. We stood there for only a few moments, before I whispered, "Come on, time to go." Dawn G had just announced that the walk was ready to begin.
The ribbon, cut, fell to the ground and off the crowd went. Through the sea of people, I watched my family in front of me and I held tight to my husband's hand. "Thank you, God," I whispered.
I couldn't have asked for a better day, and as we crossed the finish line at this year's Louisville AIDS Walk, I was struck with this tremendous feeling of awe.
Wednesday, October 2, 2013
Happy October! It's no "trick" that this is my favorite time of year so you know it's been a real "treat" pulling out the Halloween gear today : ) While I've been lighting pumpkin spice candles and toting my youngest back and forth to football, my husband, a former Marine, has been busy raising money for Titan Marine Wounded Warrior Project Benefit. The WWP event, which will include music, food, bar and silent auction, will commence on the eve of November 2nd, 2013 so be sure and check them out on FB!
These are the facts:
AIDS related deaths in the US alone are estimated to be more than 650,000. That's more American casualties that WWI, WWII, The Korean War, and Vietnam combined. It's hard for me to wrap my mind around those statistics, but there they are. Would you believe that worldwide AIDS has claimed a staggering 35 million men, women and children? That takes a moment to sink in, doesn't it? Unfortunately, these numbers don't lie, and I think we can all agree that a new strategy is in order.
The great news is that for the first time we have real hope that a solution to AIDS is within reach. One step, one more scientific break and we could very well have the cure. Be it cancer, the homeless, the disabled, or AIDS, all it takes is just one person to make a difference. My adopted son was saved by one American missionary who saw his need. One person can change someone's life.
My hope for you this month is that should you come across a mother who cannot give her children enough, you'll fill up a box with presents, or should you see a beggar in the street that you reach into your pocket. And if you believe for something crazy, like a cure for AIDS, that you'll have the courage to fight for it with all your heart. I hope that your month is full of rewards and all the good that you do comes back to you ten-fold. Happy Trick-or-Treat!
Wednesday, April 24, 2013
For the last sixteen years (since my children's diagnosis) all of my most important choices have revolved around this one, larger than life question, "Will this bring us closer to a cure?"
I think as parents, we're tried and tested on a daily basis on how to best care and look after our families. In our situation, the kids' medical care has always had to take a front seat. My children are seen regularly at St. Jude Children's Research Hospital. They are a cutting edge research hospital, and being a patient there means that you agree to take part in studies that the hospital is conducting.
When asked if we will take part in a particular study, my "clarity" question comes in handy. It helps me to focus on what's most important for my children. If I feel that the study is too invasive or just not right for my children, naturally, I decline. If we all decide that a certain study they ask the children to participate in could benefit, or even possibly bring us closer to a cure, then we jump on board.
My children have beaten some incredible odds and I thank God every single day. Do I believe that one day my children will be cured of HIV? I do.
During our last visit to St. Jude, we were talking with one of the workers. The kids were enrolled in a "survey" study in which they had to answer questions about their general knowledge of HIV. One of the questions they were asked was, "Do we have a cure?"
I smiled when my son answered, "Yes, of course. We just need to find it."
His words just may have been prophetic. Read this amazing story and you'll understand what I mean.
I don't usually ask my blog followers for favors, but because I believe so strongly in the power of prayer, I'll ask that you pray for this child, his family, and the doctors who are attempting to cure him of both his HIV and cancer. This "first of its kind" transplant could lead us toward what my family already believes possible...a cure for HIV.
Monday, April 8, 2013
Wednesday, August 29, 2012
I remember a few years back reading an article where a leading AIDS researcher was quoted as saying, "HIV will never be cured." I was devastated. To think, that someone at the helm of research had no belief in a cure for a disease that, if not cured, would destroy millions of lives, worldwide.
There will always be nay-sayers, and there will always be those special few who set out to accomplish the "impossible," and succeed. Think about it. Once upon a time, someone said the world was flat, we'll never walk on the moon, and a cure for HIV would never happen...
Never say Never, friends. Hats off to these two for attempting the "impossible," and would you just look what happened. Now that we know that HIV eradication is possible, this will surely lead to newer and more innovative cure research. We have much to look forward to!
Read more about Dr. Gero Hutter here:
Sunday, August 12, 2012
30 years and 30 million lives lost. I have a hard time even wrapping my head around those numbers. If you ask anyone, chances are they've lost someone to AIDS. I remember the first person I lost to AIDS like it were yesterday. For you it may be a sister, a lover, a parent, a friend--no one's immune.
We can't change the past, all we can do is move forward...We can, and ultimately will cure HIV/AIDS and prevent future generations from suffering what will one day be looked back on as the worst epidemic of all time. I refuse to give up. The world deserves a cure.
I came across this powerful video. Just a small reminder of how far we've come in the last 30 years.
Sunday, March 25, 2012
I'll never forget the phone call that saved my children's lives. It was a new doctor. She was quick to the point. She said, "Something in your son's blood work warrants an AIDS test. I suggest your whole family be tested."
A few years ago, I couldn't have shared this story, but the love and support I've received from my readers, friends and family has changed that. Still, it's never easy, but as a mom who wants to see this disease eradicated, I think it's important to do so. Below, I've pasted a link to a blog post I recently wrote for THE HUFFINGTON POST.
Want to know two simple things you can do to help end pediatric AIDS?
2. Visit www.Pedaids.org to learn more.
Thanks for sharing The Huffington Post link with your friends! It sounds like a such simple thing, but sometimes it's the little things that can make all the difference in the world.
Have a blessed day!
Saturday, February 18, 2012
Tuesday, January 24, 2012
“I want to see my children cured of HIV.”
Suzan Stirling is a 45-year-old mother, AIDS activist, and writer. Diagnosed with HIV at the age of 29, she lives in Kentucky with her husband, two biological children, and an adopted son from Ethiopia whose birth parents died from AIDS.
How did you find out that you were HIV-positive?
I’ll never forget that phone call. It came shortly after we brought our son home from the hospital. He’d been very sick and in and out of intensive care for months with a respiratory virus that his body wasn’t fending off. I was at my mother’s house when I got the call that literally saved his life. It was a new doctor. She was quick to the point. She said, ‘Something in your son’s blood work warrants an AIDS test. I suggest your whole family be tested.’ I just remember thinking, ‘I’m going to have to watch my children die.’ I didn’t think I was strong enough to handle that. That was sixteen years ago. I’d unknowingly contracted the virus in 1985 (before I’d met my husband) from a young man I’d been engaged to who I was told, years later, had died of cancer. Back then we didn’t even think that women or heterosexual men were at risk, but we know better now. At the time I was diagnosed, I’d carried the virus for nearly ten years without ever knowing it. I’ve lived with HIV for a total of twenty-six years now, more than half of my life.
How often do you visit a doctor?
I have a wonderful ID doctor who I see once every few months. Our visits run like clockwork. He accesses my health, orders the appropriate tests, and always asks me point blank, ‘How are you doing?’ My answer, I’m thankful to say is always, ‘I’m doing great.’ And I am. Amazingly, my viral load–– which is the amount of virus that can be detected in the blood––remains undetectable, and my CD-4 count (immune system count) is better than the average “healthy” person. I’m happy to say that all of my children are doing equally well. We’re very fortunate to have access to life saving treatment. I think it’s hard for people to even fathom that in other parts of the world, like Africa, where my adopted son is from, people are still dying every day from AIDS, a disease that’s now completely treatable.
What side effects do you experience from your medication?
In the early years, after my diagnosis, the medicines I took were very difficult and the side effects almost intolerable --s o much so that at one point I stopped taking them. I just couldn’t do it anymore. I thought, if this is how my life is going to be, I’d rather take my chances. They were making me that sick. Today, it’s a whole different story: due to some wonderful advances in medicine and an experienced clinician, my medicines are easy to take and I have no side effects from them. I take three pills in the evening and two in the AM. That’s it. Simple. I feel like I’m living the best years of my life, right now.
How has your diagnosis changed you?
I almost want to say, ‘How has it not changed me?’ because to be completely honest, you can’t go through what I’ve been through -- any life-threatening illness really -- be it cancer or what have you, and not come out a completely changed person. HIV is even more difficult because unlike cancer, it’s a disease that so many people suffer with in silence, myself included, for many years. I was so fearful of what people would think of me, or worse, that they’d be afraid of me. There were so many things that I had to work through to get to where I am today. HIV forced me to be a much braver, more open person, and I’m thankful for that.
How did your family and friends react to your diagnosis?
So much love. So much support … there isn’t a day that goes by that I’m not thankful for the family, friends and even total strangers who have built this palatial wall of support around my children and our family. They are the reason we’re healthy and whole today. They’re the reason we’re able to openly share our status and story with others.
How do those outside of your inner circle react when you disclose your diagnosis?
I remember my son needing a surgery years back, and my telling the doctor, ‘My son is HIV positive…’ thinking this would be a problem. She just looked at me and said, ‘Okay, that doesn’t change anything. I can help your son. I’m not worried about the HIV.’ This woman was a complete stranger. Moments like that you don’t forget.
I understand people’s fear of HIV (I used to be one of those people) and I also know that a little education goes a long way. I encourage people to ask me questions. We just need to open the lines of communication.
How has HIV affected your romantic relationships?
I’m glad that someone finally had the guts to ask this question because it’s a really important one that deserves an honest answer. We need to feel free to talk openly about (and this will make my teens cringe) sex and intimate relationships. Plus, I like talking about sex. I also enjoy the act of lovemaking very much and have been doing it on a regular basis for the last twenty-four years of my marriage … before and yes, after finding out that I had HIV. I can’t speak for everyone in a romantic relationship where one or both are positive, but for my husband and I, although we’ve had bumps and dips in our marriage like any couple, sex has never been one of them. Maybe that’s because we’d already been together for almost ten years before I was diagnosed, I don’t know, but what I do know is that people meet and fall in love every day. HIV isn’t going to stop that.
In fact, in my novel I’ve addressed the “sex” issue with what’s probably the first sex scene EVER written to involve a condom! Plus, with today's treatment the virus is suppressed to such low levels that it makes transmission highly unlikely. What I’m trying to say is we're not so different from everyone else. What I’m trying to say is that HIV doesn’t change that we’re still human. We still have desires, and a need to love and be loved. I used to tell my daughter when she first started dating that HIV would weed out the Mr. Wrongs, but wouldn’t matter to that special Mr. Right. It’s true. With the right person and knowledge as your ally, HIV won’t stop you from finding that special someone to share your life with.
Do people treat you differently because you have HIV? How does that feel?
No, I really don’t think so, only because I don’t act differently. I’ve got a pretty healthy attitude and after having lived with HIV for so many years, it’s like anything else¬–you grow with it, you become more comfortable, and I think that people pick up on that. I’m not worse for having HIV; if anything, I’m better for having survived it.
What is the hardest part of living with HIV?
A few years ago, I would have said not being able to talk about my disease openly. Today, the hardest part for me is feeling that I have a responsibility to talk about it openly. It’s not easy for me to share my story, there are some really painful moments I don’t like to re-live, but I’ll keep doing it because if it helps one person, then it’s worth it to me.
In which ways do you take a stand for those who have HIV or AIDS?
Over the years my family and I have had the opportunity to work with a number of amazing organizations including The National AIDS Memorial Grove, amfAR, and The Elizabeth Glaser Pediatric AIDS Foundation –– an organization dedicated to ending mother to infant transmission around the world. My goal is to facilitate HIV awareness and help end mother to infant transmission of HIV, a goal that’s been achieved here in the United States, and with support and necessary funding there’s no doubt in my mind, we’ll one day achieve those goals around the world. You can learn more about what I’m doing to help in the fight against HIV/AIDS by visiting my blog (http://www.redribbondiaries.blogspot.com/)
Your biggest fear:
My biggest fear used to be losing my children. I don’t fear that anymore. I know that they’ll live long, productive lives and that makes me happier than I can even express. My biggest worry today is health coverage. If I didn’t have health insurance, my medicine alone would cost over two thousand dollars a month. So, yes, my biggest fear is that something could happen, I could lose my health insurance, and then not be able to afford the medicine that keeps me healthy.
You’ve written a novel, The Silence of Mercy Bleu, which will be coming out in March 2012. The main character in the book has HIV -- can you tell us how closely your fictional story relates to your own personal story?
The Silence of Mercy Bleu was a story that had been stirring inside of me for years. I always knew that my first novel would be a story about a young woman with AIDS because it's a topic so close to my heart, but to answer your question: Is Mercy's story similar to my own? I'd like to say that my life and my experiences have been exciting enough to conjure up a "best-seller" but truth be told, probably not! What I am, though, is an avid observer; I love to watch and wonder. In actuality, the character of Mercy and her life experiences are vastly different from my own. I did that intentionally. But the feelings of isolation and shame -- the stigma that my character faces, those are very real things that many people living with the secret of HIV, myself included, have experienced first-hand.
What do you want most out of life?
What a great question. I want to make a difference. I want my life and my journey to have meant something. I want a lifetime of happiness. I want to love and be loved. I want to learn something new each day. I want to live. I want to see my children cured of HIV. I want… I guess I want a lot of things. But, if I had to boil it down to the one thing I want most, the thing I can’t live without, it would be a life filled with hope because with hope, I truly believe that all things become possible.
What's something you wish everyone knew about people who are living with AIDS?
I want them to know that HIV is just an illness. It doesn’t define who a person is, any more than a person who is diagnosed with cancer, or hepatitis, or diabetes. Get to know the person and then you’ll see beyond the stigma, beyond the disease. More than anything, people living with HIV need your compassion. Give us a hug. I can’t tell you how much that simple gesture means to a person living with HIV.
What would you tell women and girls who have just been diagnosed with HIV?
This is important. I would tell them that your life is not over. Don’t let HIV stop you from realizing your full potential. Be brave, be hopeful, be kind…and all good things will find you.
Anything else you want to share with our readers?
I just want to thank BettyConfidential and its editors for giving me this opportunity to share my story with readers on such an important day, World AIDS Day. And to all who read this: Be brave. Get tested. Knowing your status is your best defense against HIV/AIDS.
To learn about Suzan’s upcoming novel visit SuzanStirling.com.