Saturday 6 October 2012

2 kids

Two little girls came to meet Sheba today.  They were with their grandmother - and a local lady who is helping them out.

Priya and Roshini - as we will call them - are 9 and 11 years old.  They both have HIV.  They are both orphans.

When we met them a year ago it seemed all so hopeless.  Their grandmother was trying to look after them - but she works cleaning houses and so leaves at 8 in the morning and is out most of the day till late at night.  She has a son who lives in a good flat, but he does not want anything to do with her and his orphaned nieces.

We despaired when we met this 'family' of 3.  It seemed all so hopeless.  The girls CD4 levels were disastrously low.  One of the had 127.  One had only 27.  Current medical opinion calls a person with HIV as being in the AIDS stage if their CD4 is lower than 200.  To have only 27 means that there is hardly any scrap left of God's beautiful gift of a self-regulating body-defense-force!

But even more. Who would look after these kids?  An orphanage?  A foster home?

Amazingly a beautiful relationship opened up.  A local couple - and their teenaged kids - opened up their lives.  We will call them Ben and Daisy.  Daisy talked with her husband and kids and they agreed to start helping Priya and Roshini.  And help they did.  Regular visits to their home.  Help with food rations.  Paying for educational expenses.  Taking them to see Sheba and helping start them on ART medications.  Bringing the kids to their home during the holidays.  Taking them to church with the family. And on and on.  The kindness and love of this couple is amazing.  They have quietly been caring for Priya and Roshini and their grandmother with such love.

Today Daisy brought the two and their grandmother to see Sheba.

Sheba could tell something was up.  The normally bouncy kids were not making eye-contact.  They were answering in mono-syllables.

Sheba asked the grandmother what had happened.  The story tumbled out.  They had been told to vacate their room by the owner.  And as they were shfiting the single bed they have, the grandmother found something behind it.  A veritable mound of medicines.  The kids have been secretly throwing their ART pills behind the bed because they do not want to take them.

The grand mother is horrified.  Daisy is shocked.  How can this happen?

Well, though Sheba was sad to hear this, she was not shocked.

We know only too well how difficult it is for anyone to take medications.  Let alone life-long.  Let alone if you are a kid of 7 or of 9.

And that too when you are also taking medication for TB.  As Priya (the older one) is.

So Sheba started to talk with Priya.

Why did you throw the medicines?  Sheba asked gently.

Because I was 'kantal.'

We think this means something like 'fed-up'

As the conversation continued, Sheba probed gently about how much this girl knows about her condition.  Priya is bright and usually tops her class at school.

'What sicknesses have you heard of?' asked Sheba.

'Malaria.  Diarrhea.  Chicken Pox.  Measles.'  came the reply.

'Good' said Sheba.  'What about Tuberculosis?'

'No.'

Its hard to know whether the little girl really has not heard, or doesn't want to know.  Sheba moves ahead carefully and explains that one of the kinds of medicines that Priya is taking - the one she gets from the local govt. health centre is for TB.

'What about the other medicine?  The one you go to the Civil Hospital to get.  Do you know what that is for?'

Priya says she does not.  She then tells that her grandmother has told her she has a disease from her mother.  But she must not tell anyone about it.  No one.

Sheba explained that just telling about that sickness will not harm her.  Sheba told Priya that it is a difficult disease to talk about, but when she turned 13 everything about the sickness will be explained to her.  She assured Priya, however, that whenever Priya wanted to know more they would tell her.

Sheba talked about just how important the medicines are.  How good they are and how much they help make the body strong.

How hard it is for these children.  How hard it is for every person living with HIV.  But especially for children who have known no other life.

Though the meds are real life-savers, they are also so hard to take.  Especially if you don't know why you have to take them.  If you have been told you have a secret and deadly disease.  And yet as a kid the whole adult world with its seriousness and hustle and bustle can just be so alien.

We hope Priya and her younger sister will now stick to taking their meds.  We don't want to put Priya in a coffin anytime soon.  We are so grateful for Daisy and Ben for their kindness in reaching out to Priya and Roshini.  Without the love and supervision of Daisy and Ben, this conversation would not have happened.  And though there is still much work to be done in Priya and Roshini's lives, we are so blessed to see them growing.

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