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My Son Ryan

Profile of Jeanne White and her son Ryan. From Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

jeannewhiteIn 1984, one week before Christmas, Jeanne White was told that her son Ryan had contracted AIDS from a blood product he’d used to control his hemophilia. The doctors gave him six months to live. Struggling to make life as normal as possible for her thirteen-year-old son, she attempted to have him return to school as soon as possible.

She did not realize the amount of fear and prejudice that would result when the school heard of his illness and refused to allow his return. After numerous court battles, which brought he and his mother to national and international attention, Ryan was allowed back in school, only to be inundated with hate, ignorance and abuse. As a result of their struggles Ryan was befriended by numerous celebrities such as Elton John, Michael Jackson and Phil Donahue and began to educate children and parents about AIDS by speaking at schools, appearing on numerous talk shows and news programs and having a movie about his life broadcast on national television. On April 11, 1990, five and a half years after his six-month prognosis, Ryan died. His funeral was one of the most publicized services of that decade.

Shortly after Ryan’s death his mother Jeanne, who had always been behind the scenes publicly, was asked by several senators to speak about Ryan to Congress in order to pass national legislation for AIDS education. She reluctantly agreed and was instantly thrown into the media spotlight. The bill, THE RYAN WHITE CARE ACT, was subsequently passed and Jeanne White became one of the most sought after speakers in the country. She founded the Ryan White Foundation and continues advocating for AIDS education and prevention with children, teenagers and their peers.

JEANNE WHITE:

A lot of times it takes a little push. Everybody likes feeling sorry for them selves over the death of a loved one. That’s kind of normal. With me it was Senator Kennedy and Senator Hatch who got me going and I fought it every step of the way. Ryan was always the public speaker not me.I was just following Ryan around. Senator Kennedy and Hatch had just named a bill after Ryan called the Ryan White Care Act and they wanted me to come to Washington DC. It was too soon. We had just buried Ryan two days before and they asked me to come anyway. They knew it was going to be hard, but they said, “You know, this is the first chance that we have of getting something done for people with AIDS.” They said, “Ryan’s death is so fresh on everybody’s mind, his illness and funeral was carried by every network for the last week and a half. This is the first chance of someone being in the public eye that takes the focus off the disease and puts it on to the fact that ‘anybody can get it.’”

I said, “Yes”. I said, “No”. I said, “I can’t, I really can’t. Ryan used to do that, not me.” On the second day people from Senator Kennedy’s staff called me again. They said, “Terry’s going to be there.” Terry and others had helped me through a lot of bad times. During all the years that Ryan fought AIDS the more people I knew that died of AIDS. And I had seen so many families just like me. Even though I didn’t want to get involved, so many people helped me that I kind of felt like I owed it to them. Then Senator Hatch called me and said, “You know, we’re not going to take ‘no’ for an answer. I have twenty-three senators lined up for you. All we want you to do is tell what it’s like to watch your son live and die with this disease.”

So I went to Washington and I’m so glad I did. It made me feel good. I didn’t feel I did great, not like I wanted to. I could have done better but I knew I was sincere in what I felt and said. After that, people wouldn’t let me stop.

Phil Donahue, who was a pallbearer at Ryan’s funeral, has become a very good friend of the family. When he was in the hospital visiting Ryan he noticed all the mail and could not believe how much was pouring in. He took a bunch of the letters back to New York with him and called saying, “Do you realize these letters are all from kids?!” I said, “Well yeah, that’s who generally wrote Ryan.” He said, “Jeannie, you’ve got to continue this work. You’ve got to answer this mail.” Phil said, “I’ll hire you an assistant.” There were over sixty thousand letters! Phil kept his word and with the help of Marlo Thomas and the St. Jude volunteers, they were able to find a lady that lived close by.

I was so impressed with Ryan, so proud of him. Sometimes I’d think, “Golly, is he really my son?” To me he was just my little kid, but to the nation, he was this celebrity and hero. I hated to even think that I could follow him, his impact was so great and people listened. When I speak I’m always a nervous wreck, even though I’ve been doing it now for years. I’ve messed up a lot, but I’m me. When I introduce myself I say, “I’m just a mom. I’m a mom just like your mom and because of this misunderstood disease called AIDS, my life changed overnight.” I say a prayer every time I go out. I say, “Lord, please help me to get through this. Help me educate these young people. Help me make a difference in their lives with my story.” Then I say, “Ryan, please be there with me.” Then I have this kind of surge that goes through me and I feel like its Ryan saying, “OK, Mom, I’m with you.”

I think we’ve made a lot of progress. By “we” I mean everybody who has committed so hard to fighting this disease with education and through therapy and drugs and medical treatment. I think we’ve come a long way. The people who have to be commended the most are the people that are not here. Their lives had to be lost for us to get where we are today, to show compassion. Even though I’m tired I’m still doing it because of the Terry Burns, the Mike Callums and the family members that I’ve seen.

One day we were riding in the van and Ryan reached over and grabbed my hand and started swinging it. I looked over and said, “OK, what do you want?” He said, “I don’t want anything.” “Come on Ryan, what do you want?” I continued. He replied, “Can’t a son hold his mother’s hand? ” I said, “Come on, you really don’t want anything?” “Mom, I just want to say thank you for standing by me, for always being there for me.”

I remember that moment when I speak to teenagers. You know, we always think everybody’s going to be here tomorrow, but one day you’re going to wake up and somebody’s not going to be there. I say, “You might think this stupid old lady up here doesn’t know what she’s talking about, but I do. The next time you go home from school, even if you think it’s the corniest thing you’ve ever done, write a letter to your parents. If you think you’re real cool and you can’t go up and hug them around their neck and say, ‘Mom. Dad. Thank you. I love you.’ Then write a note and put it on their pillow. Do something so that you’ll never be sorry.”

It would have been easy to be mad all the time at the people who ridiculed us, who discriminated against us, but we had to put our lives in perspective and look at what was really important and what wasn’t. Everybody saw on the news that it was this fight for Ryan to go to school, but the number one priority in our life was keeping him healthy. Second, was keeping my job at General Motors, because we had great insurance and it paid for all his medical bills. And the third part was my daughter Andrea, keeping us together as a family.

At first, it’s like, “Why?” Everybody wants to know why. Why wasn’t he given a miracle? All my life I was taught if you pray hard enough, if you believed hard enough, that you would get a miracle and you could never doubt that or you wouldn’t get one. I never thought Ryan was going to die. I just couldn’t quite understand that. I thought nobody had more people praying over them than Ryan did. I prayed, “Lord, wouldn’t it be nice to show this kid a miracle in front of the whole nation.” Everybody knew he’s lived with AIDS for five and half years. He’d been in and out of hospitals. He’s been blind twice. I mean, this kid had a heck of a life, why couldn’t he be given a miracle? When he died, it was like, “Why? What more could we have done?”

When he died I was really taken aback. I started questioning my faith. I think that’s normal. I mean, I started wondering if there really is a god? How does God let things like this happen? I see people around me all the time asking that question. “Why do young kids have to die?” I mean, anybody really, lots of other good people have died too. So then I started trying to find reasons.

After awhile it started to get clearer. “Look at all the things he’s done in his short life. He’s educated so many people. Wouldn’t we all like to say we had accomplished as much as this kid did in only 18 years?!”

I tell the kids that when I get to heaven I’m going to be angry. I hope the Lord forgives me for being angry, but I’m going to say, “Why did you have to take Ryan?” Then I say, “You know what I think he’s going to say? He’s going to say, ‘You know what, he was only supposed to live three to six months. I gave you five and a half years and you’re still not happy.’” Maybe I got a miracle. We had quite a few Christmases that we never thought we were going to have.

I didn’t want to lose my faith. I was mad at my faith. I was mad at my church. I was mad at my religion. I was mad at God. But I wanted to find a reason. I eventually started seeing things around me like the Ryan White Care Act and Elton John go through rehabilitation and get off of drugs and alcohol and I thought, “My goodness, Ryan touched more lives than I ever knew. Perhaps those people got miracles and they don’t know it.”

Michael (Jackson) was a real good friend of Ryan’s. When Michael called Ryan in the hospital once, Elton said, “With all the money that’s in this room, we can’t bring this boy back to life.” That was a real big realization to Elton . . . that he had all the money in the world, he had everything he could ever buy, but he could not buy his health. That’s why he entered rehab. When Michael called me after Ryan died, just to see how I was doing, I said, “I’m doing OK but what made you and Ryan so close?” When Michael would call, they would have long phone conversations. He said, “You know, most people can’t get over the awe of who I am, so nobody can ever act normal around me. Ryan knew how I wanted to be treated, because that’s how he wanted to be treated. I can’t trust anyone because everybody always wants something from me.” He could tell Ryan anything and Ryan wasn’t going to go blab it or tell it, you know. “I promised Ryan he could be in my next video and now that he’s gone I want to do a video for him.” He made a video called Going Too Soon, which was about Ryan.

It’s hard to talk about death. I didn’t want to talk about it because I didn’t really think he was going to die. I can remember him saying what he wanted to be buried in. I told him I really didn’t want to talk about it but he went on anyway, “I know you like me in a tux but I don’t want to buried in one.” I said, “OK, Ryan, what do you want?” I mean, it’s like, I’d say anything to get this conversation over with. He says, “I want to be buried in my Guess jeans, my red T&C (Town and Country) shirt, my Air Jordan’s and my Jean jacket.” He pauses, as I’m fading out, then says, “You know how people are when they’re lying in a casket and everybody is watching their eyes to see if their eyes move? I want my sunglasses on and I want to be buried in my boxer shorts.” “Your boxer shorts?” I exclaimed. He’d just switched from wearing briefs to boxer shorts and really liked them. “Why your boxer shorts?” I deadpanned. “You know that hernia I got? I want to make sure I . . .” He had a hernia that they couldn’t operate on because he had no platelets. “I want to make sure I’m comfortable.” And I thought, ‘Well, if you’re dead, I mean . . .’ “OK, just talk,” Ryan said. “You know, as a mom.”

One of the best things after Ryan died was when people talked about him. I think it was also good for me to get involved in something I truly believed in, doing something, instead of sitting at home feeling sorry for myself. That’s the easy way to go . . . feeling sorry for yourself. People didn’t let me, although that’s what I probably would have done if not pushed. But people were always talking about Ryan and people still do and that kind of keeps him alive within me.

More inspiring people at Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

Celebrating in South Sudan

Women for Women International (WfWI) South Sudan

Despite the ongoing violence and worsening food crises in South Sudan, Women for Women International recently celebrated the first graduating class of women in South Sudan. The 277 program graduates, who began their training last spring, each received a graduation certificate at ceremonies in the Yari, Payawa, Longamere and Ronyi communities.

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Women spoke of their personal success stories, and graduates who were trained in bread-making offered mandazi, a popular type of bread, to those in attendance.

Reflecting the important ways men can champion women’s equality, many men – from the mayor of Yei and other government representatives to the graduates’ husbands, brothers, and fathers – attended the ceremony to support and congratulate the women. A number of them spoke positively of the impact of the training program on their wives, sisters, and daughters, how successful the women had become, and the transformative impact on their families and communities.

This May and June, we have over 1,800 women graduating from our programs in Afghanistan, Iraq and the Democratic Republic of the Congo. Help us celebrate our graduates in South Sudan and elsewhere with a donation that celebrates a special graduate in your life.

Better Than Commerical Banks

Better Than Commercial Banks

We have always been proud of our FINCA (Foundation for International Community Assistance) clients and the success they achieve. After all, they have an astounding on-time loan repayment rate of over 98 percent – as good or better than many commercial banks expect.

But today, we’re writing to you with a very special message: Our client success is now the best we’ve ever seen!

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When our over one million micro-entrepreneurs get the hand up they need, we never cease to be amazed at how far they go – entrepreneurs like Victoria Banda of Zambia. A 36-year-old woman who never finished primary school, she is now the main income earner for herself, her parents, and her two sisters. Starting with a loan of just $20, she now operates her own store and helps her younger sister through college.

That’s a lot to accomplish for someone who started with just $20!

We’re blown away by FINCA clients like Victoria – and hers is just one of many incredible success stories. They do the hard work to get ahead, but that first step towards success would never have been possible without people like you. When you provide an entrepreneur with a microloan, you are the turning point on their path to independence and opportunity.

Thank you for your generosity.

Sincerely,

Soledad Gompf
Vice President
FINCA

Sight for the Blind

Dear Gabriel,

Your gifts do much more than just give back eyesight to someone who is needlessly blind.

A donation to Seva creates a strong network of international eye clinics that provide much needed access to vision services in the most remote areas of the globe.

Seva_35th_Anniversary

What does it mean for every person to have access to eye care?

Early diagnosis of eye infections & injuries prevent suffering and reduce the chances of a person losing their eyesight.

Routine screenings identify cataract and other eye conditions that can be corrected through sight restoring surgery.

Eye exams and low-cost prescription glasses protect against low-vision and ensure that children will stay in school.

Seva’s sustainable programs bring eye care to the people who need it most, like in Nepal, where we are proud to announce a historic milestone:

As of this spring, all of Nepal’s 75 districts now have permanent access to eye care services thanks to support from Seva donors like you!

Bajura, Nepal had been the last remaining district without an eye clinic. Today, thanks to support from Seva & our sister org Seva Canada, this remote and underserved community now has a Primary Eye Care Center that began serving patients this past month.

We are so grateful for your role in helping to achieve this historic milestone.

Though there is still much work to be done in our campaign to eradicate needless blindness around the globe, it is these successes which we achieve together that deeply inspire us.

Seva wraps up our 2012-2013 fiscal year on June 30th. If you haven’t already supported us this year, or can make an additional gift to restore sight, I hope you will take a moment to do so today.

Yours in service,

Jack Blanks
Executive Director

Carried In Our Hearts

0399161058.01._PC_SCLZZZZZZZ_Carried In Our Hearts
New York Journal of Books
Review by Gabriel Constans

Carried in Our Hearts: The Gift of Adoption:
Inspiring Stories of Families Created Across Continents

by Dr. Jane Aaronson

“. . . There is great care, hope, and love in these pages.”

The introduction to Carried in Our Hearts reads, “These stories need to be told,” and Dr. Jane Aronson does so with honesty, insight, love, conflict, and conviction.

This collection of adoptive families around the world is wisely divided into eight thematic sections, the headings of which convey the essence of the essays in each. They are: The Decision, The Journey, The Moment We Met, Early Challenges, Becoming A Family, A New Life, Reflections: Children Tell Their Own Adoption Stories, and The Children Left Behind.

The author/editor of this collection is Dr. Jane Aronson, who has two adopted boys of her own from Ethiopia. Dr. Aronson is a pediatrician who specializes in adoption medicine and who founded the Worldwide Orphans Foundation. To say her heart, body, and soul are thoroughly invested in helping children (professionally, personally and collectively) would be an understatement.

UNICEF estimates that there are 153 million orphans in the world. Dr. Aronson is trying to get as many of them into families as possible and make sure those not adopted are treated with dignity and care.

The title of the book comes from an adopted child’s remark overheard by her mother when she was speaking to another young child her age. Her daughter’s friend said she was carried in her mother’s tummy and the adopted daughter replies, “My mommy didn’t carry me in her tummy; she carried me in her heart.” That line alone could make the harshest reader’s heart melt, but it is just one of many poignant moments revealed throughout this compilation.

Molly Wenger McCarthy, who has three children, including daughter Lu from Ethiopia, sums up the experience of adoption (and having and raising children by any means) with an insightful and comprehensive line, “The home side of our adoption is a humbling, astonishing, crazy, poignant mess of a life.”

Shonda Rhymes (creator of TV shows Gray’s Anatomy, Private Practice, and Scandal) tells about her need to surrender control to the process, as she adopted her daughters, as does actress Mary-Louise Parker and many others who had children previously or were adopting for their first time.

All of the parents who adopted also spoke about learning how to balance doing what they could for the process to move forward and simultaneously letting go of what was beyond their grasp or ability to change. Some might liken it to an adoption parent’s version of 12-step programs’ serenity prayer.

The section titled Early Challenges is especially helpful and necessary to give readers an objective perspective of the difficulties that can arise in the midst of all the goodness and joy. Physical and mental health issues, birth parents changing their minds, governments saying “no” at the last minute, adopted children having difficulty adjusting to a new environment and language, etc. can all take place before, during, and after adoption, just as painful issues can arise with biological children.

Carried in Our Hearts proclaims to contain stories from “families created across continents,” which may lead one to believe that the essays include a variety of adoptive parents (culturally, nationally, and of various financial means), but the reality is that ninety percent of the families who speak about their experience in the book are not only privileged white Americans, but also predominantly from the New York area.

This is not surprising due to the author’s circle of contacts and practice, but it would have added an enriching depth and perspective if there had been as much diversity with the adoptive parents as there is with the children who were adopted.

There is also only one story about an adoption not working out and the child being returned to the orphanage or childcare center. There may be fewer unsuccessful adoptions internationally (which is the primary focus of this collection), but on a local level there is a higher percentage (as much as 50% in some areas), in which the children do not stay in the adoptive home.

Whether you have children, are thinking of having children, thought about adopting or adopted hundreds, Carried in Our Hearts is an inspirational and timely collection. There is great care, hope, and love in these pages.

*****

Read complete review and more at New York Journal of Books.

Reviewer Gabriel Constans’s books include Don’t Just Sit There, Do Something! Grief’s Wake Up Call; Good Grief, Love, Loss & Laughter; The Skin of Lions: Rwandan Folk Tales; and The Last Conception (coming in 2014). He is the father of five children (two adopted) and is closely associated with the Rwandan Orphan’s Project and the Ihangane Project, both in Rwanda.

Every Three Seconds

Dear Gabriel,

Child marriage puts the life of a girl at risk every three seconds, while diminishing her chances at education, endangering her health, cutting short her personal growth and development – and increasing the likelihood that she’ll remain poor for life.

With the first-ever International Day of the Girl less than a week from today, the time to act on this harmful issue is now!

Do you remember how close Congress came in 2010 to passing the International Protecting Girls by Preventing Child Marriage Act? We do – this vital legislation went so far because of the dedication, commitment and support of people like you.

During the past few years, tens of thousands of CARE supporters have contacted their elected officials, advocating on behalf of young girls to put an end to this gross human rights violation. As a result of your efforts, more elected officials than ever are joining the movement to end child marriage. Thank you.

Today, we ask you to join us again in taking a stand to end child marriage and unleash every girl’s full potential. Please ask Secretary of State Hillary Clinton to commit to increased political and financial investments in girls around the world to end this harmful practice.

Action and investment from the U.S. government can help vulnerable girls escape early marriage and provide lifesaving support for married adolescents.

Second chances don’t come often. With the support of advocates across the country, we can make a difference in the lives of girls everywhere. Send your message to Secretary of State Clinton now – and help bring an end to child marriage for good!

Sincerely,

Helene D. Gayle, MD, MPH
President and CEO, CARE

Pussy Riot Is Free

Dear Gabriel,

Facing 2 years in jail for singing a song criticizing President Putin in a church, a member of Pussy Riot gestured to the court and said in her show-trial’s closing statements, “Despite the fact that we are physically here, we are freer than everyone sitting across from us … We can say anything we want…”

Russia is steadily slipping into the grip of a new autocracy — clamping down on public protest, allegedly rigging elections, intimidating media, banning gay rights parades for 100 years, and even beating critics like chess master Garry Kasparov. But many Russian citizens remain defiant, and Pussy Riot’s eloquent bravery has galvanized the world’s solidarity. Now, our best chance to prove to Putin there is a price to pay for this repression lies with Europe.

The European Parliament is calling for an assets freeze and travel ban on Putin’s powerful inner circle who are accused of multiple crimes. Our community is spread across every corner of the world — if we can push the Europeans to act, it will not only hit Putin’s circle hard, as many bank and have homes in Europe, but also counter his anti-Western propaganda, showing him that the whole world is willing to stand up for a free Russia. Click below to support the sanctions and tell everyone:

http://www.avaaz.org/en/free_pussy_riot_free_russia_a/?bMPbqab&v=17285

Last week’s trial is about far more than three women and their 40-second ‘punk prayer’. When tens of thousands flooded the streets to protest rigged elections, the government threw organisers into jail for weeks. And in June Parliament effectively outlawed dissent by raising the fine for unsanctioned protest an astounding 150-fold, roughly the average Russian’s salary for a whole year.

Pussy Riot may be the most famous Russian activists right now, but their sentence is not the grossest injustice of Putin’s war on dissent. In 2009, anti-corruption lawyer Sergei Magnitsky, who uncovered a massive tax fraud at the heart of Russia’s power dealers, died in jail — without a trial, on shaky charges, and with medical attention repeatedly denied. 60 of Russia’s elite have been under scrutiny for the case and its cover-up, and the sanctions the European Parliament is proposing are on this inner circle.

International attention to Russia’s crackdown is cresting right now, and the ‘Magnitsky sanctions’ are the best way to put the heat on Putin and help create breathing room for the suffocating democracy movement. Let’s give Europe’s leaders a global public mandate to adopt the sanctions. Sign the petition now and share this with everyone:

http://www.avaaz.org/en/free_pussy_riot_free_russia_a/?bMPbqab&v=17285

What happens in Russia matters to us all. Russia has blocked international coordination on Syria and other urgent global issues, and a Russian autocracy threatens the world we all want, wherever we are. The Russian people face a serious challenge, but we know that people-powered movements are the best cure for corruption and iron-fisted governments — and that international solidarity can help keep the flame of these movements alive. Let’s join together now to show Putin that the world will hold him to account and push for change until Russia is set free.

With hope,

Luis, David, Alice, Ricken, Lisa, Vilde, and the Avaaz team

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