In September, while I was in Lesotho, I received this email:

Catherine,

I’m a frequent peruser of your blog but haven’t had much time for blog reading lately. My husband and I have been working our asses off to get the paperwork together to adopt two little boys from Lesotho. I was amazed when I clicked on your blog this morning and saw where you were. We’ve not seen our sons faces yet. We heard about two little boys (one who is HIV positive, one who has vision issues, both under the age of 3), knew they were ours even though it’s foolish, and started working on getting all the paperwork together. My fool heart hopes that one of the children you’ll take a picture of will be one of my boys because I’m aching to know their faces, but I know that’s unlikely. Still, I hope.

Please, I know you’re going to promote this project but you have such a voice, please promote the truth about living with HIV. Please tell people they CAN adopt HIV positive children. Tell people they cannot get HIV from anything other than birth, needles, breastfeeding and sex. Tell people that HIV in the modern industrialized world is not a death sentence and that they wouldn’t know someone was positive unless they were told. Tell people that in Africa, HIV almost always leads to AIDS because those same medications that save lives in America and Canada are expensive and almost impossible to get in the worst affected places in Africa. Tell people that AIDS is stealing entire generations the same way it stole my son’s biological parents, the same way it’s stealing the parents of countless children. Tell people that it doesn’t have to be like this. No one has to die from AIDS. Please, please tell them. I wish I had half the reach you have because I’m fighting a losing battle here with trying to convince people that my son will not be someone who should be avoided or feared.

I am so glad you’re in Lesotho. Nothing but good can come from you opening people’s eyes to the realities of HIV and life in Lesotho.

A big fan,
K

I wrote her back, after I returned home. I thanked her for writing me. I told her that her message had made me cry. I told her that I didn’t have words that could match the force of what she’d written. I asked her if I could post what she said.

Because, I don’t have words to match these. I don’t have words that even come close. I’ve written a lot of words about HIV and AIDS, and about mother-to-child transmission of HIV, and about prevention of mother-to-child transmission of HIV, and about the experience of meeting people – of meeting mothers and babies and children and grandmothers and aunties and teachers and caregivers – whose lives have been affected by HIV and AIDS. About visiting a country where almost everyone’s lives have been affected by HIV and AIDS. About feeling the heavy weight of my own privilege, coming from a country where the word ‘pandemic’ is heard more often on television series about zombies than it is in real life. I wrote a lot of words about a lot of things. But none of them came close to capturing the urgency of the situation, to communicating the complicated balance of hope and fear that rules the lives of the women and children that crowd the corridors of the ramshackle clinics, waiting for their anti-retroviral treatments, waiting to find out if their babies are HIV free, to expressing how viciously unfair it seems that this is what motherhood looks like for so many women when for me it is just one long lament for more sleep and a better stroller, to expressing how viciously unfair it is that this young girl will probably never get to live out her dreams, while here young girls end up on My Super Sweet Sixteen bitching about how their daddy got them a Bentley instead of a Beamer.

I don’t have words to comfort an adoptive mother who fears that her HIV-positive sons will face persecution here from communities that don’t understand. I don’t know how to make those communities understand. I don’t know how to make anyone understand. I don’t know how to change the world. I wish that I did.

When I was in Lesotho, I met a young woman named Mammope, and her 18 month old daughter, Katleho. Mammope is HIV-positive, and has been since before Katleho was born. She followed a strict regimen of PMTCT treatment and, as of when I spoke to her, Katleho was HIV free. We spoke of her treatment, about her life as single mother, the difficulties that she faced just getting by, her determination to do everything in her power to keep her daughter well and safe. We talked and we talked, and then, just as we were about to say our goodbyes, she paused, and turned away from the translator, and asked, in hesitant English, this: “can you tell me, in America, is there a cure? Will you find a cure?” She paused again. “Because I want to live for my baby, for her.” And then she started to cry.

I cry every time I remember her. I don’t need to break that down for you. How and why she affected me is completely incidental to this story. That she affected me is completely incidental to this story. All that matters is that she is, and her daughter is, and they are just one mother and one child among too, too many, and maybe it’s enough that I can tell you part of their story – that I can play some part in, as my reader K said, above, “opening people’s eyes to the reality of HIV” – and maybe it’s not – what good is opening eyes if our hands aren’t sufficient to the work? -  but it’s all that I’ve got, all that I can do.

My heart breaks because it’s not enough.

(Not enough, but still worth doing. Also, this: learn, blush, shop, watch, listen, drum, donate, tweet,dare. And share: the stories that move you, the resources that help you learn, the programs that help, everything and anything that distributes hope. Spread it around. Please.)

There’s a home for the elderly that Emilia and Jasper and I pass every day on our walks to and from preschool and junior kindergarten and ballet lessons and karate. Emilia calls the ladies who live there her ladies – “we need to wave to my ladies, Mommy!” -  and she waves and blows kisses to them when we see them sitting in their enclosed verandah, and, when they come out outside for their daily constitutionals, she stops for chats and hugs. They give her extra candy at Halloween. She thinks that they’re awesome. “Just like Grandma, only not so far away and also they give me candy instead of cake.” Which is an important difference, you know.

The other day, after passing her ladies and dispensing the requisite waves and kisses, Emilia asked this: “why are some grandmas in wheelchairs?”

“Because they’re older, sweetie, and their bodies aren’t working so well anymore, and they can’t walk as much as they used to, so they need help. Wheelchairs help them get around.”

“Are they going to die? Because their bodies aren’t working?”

“Not just yet, I don’t think. But yes, when people get much older, they’re closer to dying.”

“And when their bodies aren’t working they’re closer to dying too?”

This is what you get when death is a semi-regular topic in your household. “Yes, sweetie, when their bodies aren’t working.”

“Is Tanner going to die?”

Ah. Ugh.

“Because he’s in a wheelchair, and his body isn’t working. Is he going to die, Mommy?”

It’s moments like these that one wishes, fervently, that a meteor would blast out of the sky or a unicorn would leap out from behind a tree or that a team of nude marathoners would streak by on the street because, seriously, flapping genitals and shooting stars and beasts of myth and legend would be easier to account for than the fact that one’s child’s much-loved cousin is dying.

To say that I chose my words carefully is dramatic understatement. “He is dying, honey. Not right now, though.”

“When?”

“We don’t know.” I clutched her hand and prayed for unicorns. “We don’t know.”

“Well, when he dies I need him to take a letter to Grandpa. I’ll write one for him, too, but there’s one I need to send to Grandpa and you said that he doesn’t have a mailbox so someone needs to take it to him. Can we phone Tanner and ask him if he’ll do that?”

No unicorns appeared, no meteors blazed through the sky, no nudists ran past us in the street, and when she asked if I was crying, I said no, no, there’s just something in my eye. And then I prayed even harder for unicorns.

******

I sent a letter with my dad when he died. I wrote a letter to him, and asked the funeral director to lay it upon his body when he was cremated. I said secret things, loving things; I gave thanks; I made promises. And I asked him if he wouldn’t mind delivering another letter, a letter to my Grandma, a letter that I had written many, many years before, when she died, and that I had asked him to give to her, a letter that I found, after he died, in one of his secret boxes of letters, a letter that he had kept alongside his suicide notes, a letter that, I think, reminded him of how powerful love and how powerful life and how powerful death and that kept him from fulfilling the his suicide wishes and that kept him tethered to life, and the joy of life, whenever such joy was faint. I asked the funeral director to place that letter upon his body, too, so that he might deliver it to her, because I knew that he’d always intended to, and that he’d be glad.

And so those letters burned with my father’s body, and that they did provided me – still provides me – with some comfort. And him too, I think. I hope.

So. I understand why Emilia wants to write him a letter. I know why she wants Tanner to deliver it. My heart weeps, knowing this.

******

We don’t really talk to Tanner about death, or at least, not about the fact that he’s dying. When my father died, we stumbled around the subject, struggling to frame it in the most positive terms – Grandpa had a good life, Grandpa was so loved, Grandpa will always be with us in our hearts – and to balance the sadness with joy – it’s okay to be sad, because we miss him, but we’re sad because we still love him and will always love him and love never dies and that’s good. That’s good! We threw a birthday party – at the lake, on the beach – for him, in lieu of a memorial, so that there could be balloons and cake and candles, so that the kids, and Tanner especially, would experience the occasion as joyous rather sad, a celebration rather than a goodbye. We called it his last birthday, and Emilia and Jasper and Sophie and Tanner loved it, and even though the wheels of Tanner’s chair got stuck in the sand and seagulls stole some of his cake, he declared it a good day. “This was a good day,” he said, and we all agreed. We saved our tears for later.

My mom and discussed at length whether we were wrong to try to contain some of our sadness about Dad’s death in front of Tanner. Wouldn’t we do better, I wondered, to be honest? To let him know that it’s okay to hurt, to be sad about death? So that he knows, when the time comes, that we’ll be hurt and sad for him? My mom disagreed. He knows we’re sad. But he doesn’t need see us in the full bloom of pain.

We still don’t know how to navigate this, this narrow valley between the joy of life and the fear of death, this valley that gets narrower and narrower the further we walk. How do we openly exult in the sunlight without acknowledging the shadows? How do we make plain how precious is each day without acknowledging that we are counting those days? How does one talk about death with a child who is dying? How does one talk about a child dying to the children that love him?

How does one prepare them for the letters?

Emilia cannot make her phone call, of course. We are not making preparations for Tanner’s death, except for all of the ways that we are, all of the ways that we prefer to think of as life, as living, as seizing the days, and so now is not the time. I don’t know that there will be ever be such a time, although perhaps there should be, perhaps there needs to be, and perhaps this angst is just my soul recoiling against what this all means.

I will let her write her letters, and I will save them for her, and when the time is right, maybe – sometime, when we are all holding hands and walking through the narrowing valley – she will ask Tanner to take them and he and she and we will be comforted. Maybe. Maybe.