Bright and Shining

Here is a thing of beauty:

Ethan is 18, and he has been living with HIV since he was born. For the first years of his life, he was sickly and small. Every day, in the silence of her heart, his mother wept for him. She was sure that her son would not live.

She wanted the world for him. Silently, she begged God to save him, to spare him, to let him grow up and know love and happiness and find his way. After years of watching her son get sick over and over again, there came a day when she was given a new test result. The doctors had tested Ethan for HIV and they found that he was positive. This meant that Ethan's mother was positive too. She carried in her blood this virus that threatened to kill them both.

This was the worst day -- and the best day. Because finally getting that diagnosis meant that the doctors knew what to do for Ethan at last. He was started on the HIV medicines that could restore his body's protective immune cells and prevent him from getting sick again and again. Ethan began to grow. He became his mother's strong and laughing boy. Slowly, she began to have hope again.

Ethan has done extremely well on his HIV medicines. He graduated from high school this year, and he was the star of his school's soccer team. He loves soccer, but even more, he loves the youth of his community. His passion is to help other kids who are growing up with HIV to know that HIV is only part of the story of who they are -- that they can still growth and thrive and dream.

"I will always do all I can to support those in need of care and support," he says.

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Ethan has organized a youth soccer tournament for kids ages 10-14 who are also growing up with HIV. He has 10 teams organized for the tournament, and the big competition is planned for December 1 -- World AIDS Day.  On this World AIDS Day, these children will be laughing and shouting and playing their absolute best on the soccer field. These children will be a bright and shining example of what it can look like to live with HIV when you have access to the medicines you need. They are the lucky ones; 2/3 of the world's HIV-infected children do NOT have access to HIV medicines. Most of those children will not be playing soccer. They will be too busy dying.

Today, these kids here in Kenya became lucky ones in another way too. Thanks to a gift from Adidas organized by our partners at The Pocket Square Project, we were given a bunch of wonderful soccer balls. Every single team will have a BRAND NEW soccer ball to play with. I cannot tell you how excited they will be -- and how delighted Ethan was at the prospect of having this kind of support for his tournament. Remember, my kids play soccer barefoot in the dirt. They make balls out of plastic bags knotted together. A real ball -- let alone a beautiful new Adidas ball -- is a marvel they will cherish.

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Their doctor was really excited too. It is a joy to see my remarkable youth leaders supported and encouraged in this kind of tangible way. HIV medicines give these children life and hope, but this kind of gift brings them the encouragement that friends around the world are cheering for them too. Thank you.

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Posted at 07:17

When you are nine...

She brought her baby sister to the clinic all by herself.

When you are nine, you shouldn't have to take care of yourself, let alone your baby sister. But when your mother has died and your father is sick and living somewhere else, you have to grow up far too fast. You are the one who makes sure that you both have food. You are the one responsible.

Caroline knew that her mother brought the baby to the AMPATH clinic. She did not know that her mother had HIV and that she was taking medicines to try to prevent this virus from infecting her baby. She did not know that the baby needed to be tested for HIV or when the baby was supposed to come see the doctor. But she knew that they should come.

Caroline's mother spared her baby from HIV. By taking the medicines to prevent the virus from passing to her baby during pregnancy or during breast-feeding, she kept the baby free of infection. Caroline is not infected either.

Even though the medicines spared her baby, Caroline's mother did not manage to spare herself. From what Caroline describes, she was very thin, coughing too much, and one day, a few weeks ago, she did not wake up. (The doctor's guess would be that she had TB.) The day that she did not wake up will shape every day of life for her two girls.

We have a program for Orphans and Vulnerable Children that can help orphans like Caroline and her sister, and I was grateful to be able to refer them for assistance and follow-up. I was grateful to enlist help. I was grateful for a social worker to try to figure out if there was an adult who cared about them who could lift some of the responsibility from the shoulders of this nine-year-old.

I was grateful, but I keep thinking about them. A nine-year-old and her baby sister and the mother we could not keep alive.

Posted at 08:09

Wordless Wednesday

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Posted at 08:06

The Heroes

I spent much of the day with some of my heroes.

Thanks to support from @ThePocketSquareProject and the sale of some lovely Kenyan handicrafts, we held an adolescent support day at our largest HIV clinic. Our oldest pediatric patients -- young adults who were born with HIV as many as 20 years ago -- gathered to talk and share and be family for each other.

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These kids. Wow. They are bright and articulate. They are brave and beautiful.

They talked about walking through fears, how they struggle daily to ignore the many voices around them that tell them that they are worthless and dirty and doomed. Instead, they cling to their dreams, their faith, their laughter, and their hope for the future. And their courage -- in the midst of sickness, poverty, and rejection -- is incredible.

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Matthew is the social butterfly of the group; he is an excellent soccer player who jokes freely and teases everyone, but also quotes Bible passages. He is quite good-looking, and I see the girls stealing glances at him. He led the discussion time for the support group, and when he talks about "living positively", he grabs everyone's attention with his organized points.

Be open with the ones who are close to you. Be as active as you can and find support from those who share your outlook. Be willing to love and to be loved.Matthew gets the group to discuss their emotions and fears and what it looks like to overcome them on a daily basis.

To encourage his peers to move beyond their fears, he uses a Swahili proverb:"A cowardly hyena lives longer, but it suffers the most."These kids want desperately to live longer, but they do not want their potentially limited number of days to be marked by fear.

When I listen to these kids, I gather hope and energy for our quest to provide medicines, to fight the constant illnesses, to keep trying to fix the broken healthcare  system. They give me hope for their futures and for our work in Kenya.

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"These kids are going to change Kenya," says Lucy, one of the world's best nurses. For years, Lucy has taken it upon herself to look after our HIV-infected adolescents at the referral clinic. They call her "mother."

My hope and admiration for their bright and shining beauty is dimmed just a bit by how it brings the depth of our losses into such clear focus. Over 50 of the adolescents at this clinic died in the last 18 months. We have lost far too many bright and shining stars. The kids talk about their "lost brothers and sisters", and we feel those holes in the midst of this assembled family.

And yet, the youth carry their mourning, their illnesses, the frailty of some of their bodies, their experiences of pain and discrimination. They walk on towards the future. They tell each other to choose hope every day.

"We choose to shine," they say. "We choose to live positively."

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The youth are planning a special day in November (thanks again to our supporters!) where they will gather just outside of town at an outdoor conference facility. They are bursting with ideas about exactly what they want to do for this special day: play soccer, perform their own skits and poems and dance routines in a talent show, eat, and spend time sharing their stories. Their eyes dance in anticipation. They cannot wait.

These young adults shine with all they have. They choose hope. It's an honor to walk beside these heroes.

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Posted at 20:31

We can do this.

I know this story so well. We hear this in our clinics in Kenya every single day...

She was HIV-positive. "I thought now nothing in my life was going to be right, nothing that I have ever dreamed of would come true," she said.

But she still wanted to start a family. A few months later, she was pregnant. She assumed the baby would be born HIV-positive and simply hoped her child would live a long, healthy life with medication.

There was a lot Tinzi didn't know. HIV-positive women who don't seek medical care have roughly a 40 percent chance of passing the virus on to their child. But with proper medical care - and a steady dose of anti-retroviral drugs - that number can essentially be reduced to zero. The problem is, treatment isn't available in many parts of the world. And even if it is, women aren't always aware of the option.

(From Goats and Soda)

She's a mother talking to another mother - and both are HIV-positive. That's the mentoring role played by Phelokazi Tinzi, who works for mothers2mothers in South Africa.

We know how to prevent babies from being born with HIV. We can have an HIV-free generation. With support and education and access to medicines, women like Tinzi will only have tears of joy to shed over their HIV-negative babies.

Posted at 04:44

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