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Tuesday, December 3, 2013

Ode to AIDS


I want to share this poem that I wrote some years back, when my children were still quite young and I had to face the very real possibility that I could succumb to AIDS and leave them motherless. Chances are, if you're reading this post you either know someone or have lost someone to HIV/AIDS. This is for you. 


        
Where You'll Find Me 


Where crimson clouds blaze bold
And tree,
A charcoal silhouette stands tall against a crooked sky
Here is where you'll find me.

Where delicate vines cling ‘round tree’s trunk
Breathe in the tall, sweet grass
This is where you’ll find me.

Initials carved into knotty bark
A token of my love for you.

When winds gust autumn
And trees rain gold upon the muddy Earth below
If you should need me,
Here is where you’ll find me.

I’ll rest beneath the untouched snow
Until doves come calling and mystic rivers flow.

Forget me not, for one hundred years from now
Here is where you'll find me
Waiting, one with all God’s creation
To once again be born anew.

~Suzan Meredith


Monday, October 14, 2013

The Finish Line


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.

You see, that finish line symbolizes something far deeper for me. The end of AIDS. We will see that day and somewhere, watching over us, is an angel named Michael, whose life and struggle will never be forgotton.

Wednesday, October 2, 2013

Trick or Treat : )


My Little Kitchen Witch

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!   


I'm also happy to share that for the first time all three of my children will be walking in this year's Louisville AIDS and Pet Walk  to be held Oct. 13th at Waterfront Park. The only hitch is that I have to okay a different mode of transport through the walk facilitators. Once I have the okay, we'll be able to register! My big wish for Oct. is for two Segway motor scooters, or a golf cart (that can be rented or donated for the day) so that my two oldest children, who both have disabilities that make walking long distances difficult, can participate! The walk will benefit Volunteers of America, a wonderful community based help organization whose mission is to help people living with HIV. I'll be creating an "event" to be posted a bit later for anyone who'd like to sponsor our walk. Our goal is to raise $500 for VOA and we will match whatever is raised! If not for this wonderful  "helping" organization many people in my community with HIV would go without such fundamental needs as shelter, food, and health care


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

Closer to a CURE


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?"

Asking myself that question has brought me clarity and focus in times of uncertainty, and believe me there have been many.

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.
Once thought to be an impossible feat, doctors at the University of Minnesota are attempting to cure a six-year-old little boy of both his HIV and cancer. He underwent a very difficult transplant (the first of its kind) just yesterday, and now will be in isolation for the next 100 days while he recovers.

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

Blue Skies Ahead


Stepping out on the Big Four Bridge yesterday afternoon. 

As my daughter and I strolled across the walking bridge I had a moment to reflect on our remarkable journey.  I say remarkable not because of our circumstance.There's nothing noteworthy or remotely remarkable about being HIV positive; what would be remarkable, though, is to live to see the end of HIV. I dream of a world cured of AIDS and there are doctors and researchers believing for the same, but there is work to do. 

As the media buzz over the Mississippi baby functionally cured of HIV settles, we are left with more questions than perhaps answers. One of the biggest, "Can we replicate these same results in others?" 

The short answer is, yes, of course we can. We now know that HIV can be stopped (in some individuals) when caught early enough. This holds true for early HIV exposures treated prophylactically, as well as babies born to mother's infected with the disease. So, what does all this mean? It's a giant step toward one day ending AIDS. 

Already, with just the medicines we now have available, we could end mother to infant transmission for good.  Anti-virals are an amazing class of drugs that drive the virus to levels that are so low that passing the virus, even in vitro becomes highly unlikely. Unfortunately, the majority of women who pass the virus onto their babies are unaware that they are carriers until it's too late. Testing and treating are key. As a mother, and a proud Ambassador for The Elizabeth Glaser Pediatric Foundation  I encourage you to get involved. AIDS isn't over yet. We still have a long road ahead, but we will get there.