Eugene Cho

My 8-year old son is HIV+. He is not scary…and I’m prepared to fight for my son’s right to live in the light.

In my mind, I’d be writing more and simultaneously, have more time to seek out guests for my blog. Neither have worked out but having said that, I read something recently and reached out to this mom and asked her to share her story on my blog. Today’s guest post is from Jodie Howerton – a friend, neighbor, follower of Christ, and fellow parent in the larger Seattle area. Minhee and I actually shared a meal with her and her husband, Mike, last year and were immensely blessed by their words and encouragement. We also loved exchanging stories of our respective three kids.

Through our friendship, I’ve since learned that their 8-year-old son is HIV positive.

Can you imagine if that was how your child was defined – seen only through that singular narrative?

Another reason why I love respect her so much is because while it takes courage to critique…it takes a whole new level of courage, faith, and audacity…to create.

But you know what…let me stop. I’ll let Jodie share in her own words.  Even if you’re unable to visit her page, I hope you’ll take a few seconds to leave a comment and encourage Jodie, her son, and their family.

Please read her post (and watch the video) and take a moment to act as you feel convicted.

I’m prepared to fight for my son’s right to live in the light.

Several years ago, when my oldest was in 5th grade, I previewed the HIV/AIDS video that our local public school uses to fulfill state educational mandates. The video was produced in the 1980’s (might have had an update in the early 90’s), was incredibly fear based, and contained very outdated information about the virus.

I was stunned. In most other ways, I’ve been very impressed with the curriculum our school district utilizes. The video featured newspaper headlines that read, “Thousands Die of AIDS” and even spliced in a shot of the grim reaper at one point. To illustrate how HIV attacks the immune system, the video used abstract concepts related to baseball that even I, as an adult, was confused by. Then there was the personification of HIV as a red monster.

My 8-year old son, Duzi, is HIV positive.

He is not scary and he is not contagious. He takes a regimen of anti-retroviral medication every day and has an undetectable viral load. He is not a threat to anyone.

The information in the video was scary. Those without additional information would be afraid of my son after watching it. Afraid of my son – a “normal” (whatever that means!) kiddo who plays soccer, basketball, and baseball, does karate, and is a talented hip-hop dancer. Afraid of my son who is a human being that defies stereotype. He is a survivor and simultaneously, a student that loves and reads the Magic Treehouse series. Just like your kids.

The video I previewed perpetuated stigma, the terrible stigma that still criminalizes HIV positive individuals, even when they adhere to their medication and have an undetectable viral load. The chances of transmission are seriously almost moot (if you consider 1 in a million via sexual intercourse moot, even less if blood outside of the body is involed- I TOTALLY do) when HIV viral loads get to undetectable – meaning HIV can’t be detected in the blood.

Back to my preview of the public school video resources:

When the video ended, my head was spinning, blood rushed to my face, and my hand shot up. Why, I demanded, was this video being shown at all? Wasn’t there something else produced in this century that we could show instead? The poor teacher showing the video was simply utilizing a resource that had been approved by our district, and by our state. I then complained to the principal and to the school nurse, who put me in contact with the Health Coordinator at the school district.

The Health Coordinator was incredibly kind and helpful. She admitted that the video was outdated and together, we searched for replacement videos – for an entire year. We found nothing appropriate for the public school setting. And I really mean nothing.

Don’t just criticize. Create.

So, I decided to make some new videos. With the collaboration of the Office of Superintendent of Public Instruction in Washington State, physicians from Seattle Children’s Hospital, and fundraising help from Seattle Children’s Hospital Foundation, I’m creating a series of four brand new video resources for 5th grade, 6th grade, middle school and high school students.

These videos will be available FREE OF CHARGE to any school district in the nation that wants them.

Utilizing a documentary format that features a “day in the life” of an HIV positive person, the videos will contain medically and scientifically accurate information and will focus on reducing the devastating social stigma still associated with the disease. Students will understand the truth about prevention and transmission, and will feel compassionate, not fearful.

Of course, given the nature of education budgets in states across our nation, there is not any funding available for these videos. We need to raise $150,000 to create all four videos. We’ve launched a fundraising campaign on Indiegogo to help us create the first video.

A collective family decision to share.

Before you go to Indiegogo, I need you to know how much thought, discussion, and prayer went in to my family’s decision to disclose Duzi’s status so openly. Up until now, we have only disclosed his positive status on an individual basis. We have never believed that HIV is something to be ashamed of. We have never communicated to Duzi that he has something to hide or be embarrassed of. Never. We have so normalized HIV in our home, that we actually rarely discuss it any more. Every morning, Duzi takes his HIV meds, I take my thyroid meds, Caleb takes his acid reflux meds, and Alex takes her iron supplement. It’s no big deal.

We started to realize sometime in the middle of last school year that more people knew about Duzi’s HIV status than we thought. Unfortunately, even though HIV status is protected under federal privacy laws, moms at the bus stop, parents at athletic events, and well-meaning people in our church like to chat about “secret” things. We realized that we were not in charge of the information people were communicating to one another about our son’s health. People that knew about Duzi’s status didn’t know that we knew that they knew and so were not coming to us directly to ask questions. We had no idea what myths were being perpetuated.

We’ve decided, with Duzi’s input, with my other kids’ input, with perspective from our community of positive families, and with counsel from friends who know us well, to disclose openly.

Secrets have much more power than truth. We desperately want Duzi to live free of the burden of secrecy and shame; I have no doubt that open disclosure will have some consequences. I have no doubt that we will encounter ignorance and prejudice But, at least we will know about it.

And, I’m prepared to fight for my son’s right to live in the light.

We have 30 days to raise money for our “Redefine Positive” campaign on Indiegogo. Would you consider contributing?

Indiegogo Campaign // Facebook Page // Twitter

536856_573529679374511_1491632652_n

Filed under:

6 Responses

  1. Shrazzi says:

    Thank you for sharing, Jodie. Duzi is fortunate to have such an amazing, loving and proactive mother. We will contribute to redefine positive, and keep your family in our prayers.

  2. Jenbunch says:

    YES! This is so exciting and SO needed. Thanks, Jodie, for paving the way and Eugene for allowing her to share the story. Awesome.

  3. Brit says:

    First, Yea for the new videos! Second, you have made me think about things. Especially this: “I have no doubt that open disclosure will have some consequences. I have no doubt that we will encounter ignorance and prejudice But, at least we will know about it.”

  4. Angela says:

    Hooray for better HIV education! That same video is a part of our curriculum. Your project can really make a difference to literally hundreds of kids a year.

  5. Patricia Boyer says:

    I am so proud of you, Jodie and of your family for stepping on the lines of education and bring the news to all of us who have had some negative and often conflicting stories about HIV. We support you and your family and your passion for the future of your dear son. I know he must be glad to be waking up in your home every day! Wow….what a mom!!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

stuff, connect, info

One Day’s Wages

My Instagram

Back safely from Iraq, Lebanon, and Jordan. Thanks for your prayers. 
I have numerous stories to share but for now, the following came up in every conversation with Iraqi/Syrian refugees:

1 Have tea with us. Or coffee. Or juice. Or something with lots of sugar in it. Or better yet, all of the above.
2 We want peace. We want security. 
3 We hate ISIS. 
4 We just want to go home.
5 Please don't forget us.

Please don't forget them... Father, please bless and protect these Iraqi and Syrian "refugee" children that have already endured so much. Protect their hearts and mind from unfathomable trauma. Plant seeds of hope and vision in their lives. And as we pray for them, teach us how to advocate for them. Amen. "We don't call them refugees. We call them relatives. We don't call them camps but centers. Dignity is so important." -  local Iraqi priest whose church has welcomed many "relatives" to their church's property

It's always a privilege to be invited into peoples' home for tea - even if it's a temporary tent. This is an extended Yezidi family that fled the Mosul, Iraq area because of ISIS. It's indeed true that Christians were targeted by ISIS and thatbstory muat be shared but other minority groups like the Yezidis were also targeted. Some of their heartbreaking stories included the kidnapping of their sister. They shared that their father passed away shortly of a "broken heart." The conversation was emotional but afterwards, we asked each other for permission to take photos. Once the selfies came out, the real smiles came out.

So friends: Pray for Iraq. Pray for the persecuted Church. Pray for Christians, minority groups like the Yezidis who fear they will e completely wiped out in the Middle East,, and Muslims alike who are all suffering under ISIS. Friends: I'm traveling in the Middle East this week - Iraq, Lebanon, and Jordan. (Make sure you follow my pics/stories on IG stories). Specifically, I'm here representing @onedayswages to meet, learn, and listen to pastors, local leaders, NGOs, and of course directly from refugees from within these countries - including many from Syria.

For security purposes, I haven't been able to share at all but I'm now able to start sharing some photos and stories. For now, I'll be sharing numerous photos through my IG stories and will be sharing some longer written pieces in couple months when ODW launches another wave of partnerships to come alongside refugees in these areas. Four of us are traveling together also for the purpose of creating a short documentary that we hope to release early next year.

While I'm on my church sabbatical, it's truly a privilege to be able to come to these countries and to meet local pastors and indigenous leaders that tirelessly pursue peace and justice, and to hear directly from refugees. I've read so many various articles and pieces over the years and I thought I was prepared but it has been jarring, heartbreaking,  and gut wrenching. In the midst of such chaos, there's hope but there's also a lot of questions, too.

I hope you follow along as I share photos, stories, and help release this mini-documentary. Please tag friends that might be interested.

Please pray for safety, for empathy, for humility and integrity, for divine meetings. Pray that we listen well; To be present and not just be a consumer of these vulnerable stories. That's my biggest prayer.

Special thanks to @worldvisionusa and @worldrelief for hosting us on this journey. 9/11
Never forget.
And never stop working for peace.

Today, I had some gut wrenching and heart breaking conversations about war, violence, and peacemaking. Mostly, I listened. Never in my wildest imagination did I envision having these conversations on 9/11 of all days. I wish I could share more now but I hope to later after I process them for a few days.

But indeed: Never forget.
And never stop working for peace.
May it be so. Amen. Mount Rainier is simply epic. There's nothing like flying in and out of Seattle.

#mountrainier
#seattle
#northwestisbest

my tweets

  • Boom. Final fishing trip. Grateful. A nice way to end my 3 month sabbatical. #catchandrelease twitter.com/i/web/status/9… || 1 day ago
  • Christians: May we be guided by the Scriptures that remind us, "Seek first the Kingdom of God" and not, "Seek first the kingdom of America." || 1 day ago
  • Every convo with Iraqi/Syrian refugees included: 1 Have tea with us 2 We want peace 3 We hate ISIS 4 We want to go home 5 Don't forget us || 4 days ago
  • Back safely from Iraq, Lebanon, Jordan to assess @OneDaysWages' partnerships & to film mini-documentary on refugee crisis. So many emotions. || 4 days ago
  • Pray for Mexico. For those mourning loved ones. For those fighting for life - even under rubbles. For rescue workers. Lord, in your mercy. || 4 days ago
  • Don't underestimate what God can do through you. God has a very long history of using foolish and broken people for His purposes and glory. || 6 days ago