18
Jan

“You Simply Must Love More”. The Story of an Adopted Boy with HIV

Recently a woman who adopted an HIV-positive boy contacted EVA Network (Russia).  “I have a great desire to write about this issue, about fear and prejudice, so that the lives of “poz” people can be happier, and so that those who are deprived of a family can find one faster,” she said.  Read on to find out about her family’s story.

“My son, my “poz” boy, is a very good kid. Of course at first I wasn’t ready to take it on, but it turned out that of all the diagnoses in the database among children who need a guardian or to be adopted, HIV is hardly the most harmful. And I’m not kidding!

How it all began

He was very handsome. Even when his face was constantly shadowed with anxiety and fear and the pain of rejection and loneliness. Yes, even a one-year-old baby can suffer.

Behind him was a long trail of loss and hardship. His mother, who abandoned him in the maternity ward, was very ill; HIV was not particularly prominent in the long list of her diseases as it included much scarier things. He spent the first 6 months of his life in a container at the infectious diseases ward of the hospital. And then, an orphanage for infants.

The route to a family was not very long as we met him rather early on. But regardless, his initial experiences hurt him. We then had to grope about to find all the holes in his armour, break through the barriers of fear and disbelief. Now, of course, things are much easier.

 

Diagnosis

The hardest time for me was the moment when his diagnosis was confirmed. What did I know about it? Nothing. It was scary. More precisely, extremely scary.

I was afraid of becoming infected. Yes, everything was so obscure, although it was relatively recent. I thought about precautions. About how to manage life at home to avoid infection: about dishes, personal hygienic objects, and other things. And other nonsense. Of course I read and heard that HIV is not transmitted through day-to-day contact. But fear is an irrational thing.

As soon as he was in my arms, my fear vanished and was replaced by acceptance. I saw HIM, and HIV became just one of his features, a particularity, like his hazel eyes and smile. I understood and accepted that this small person is incapable of harming me. Quite the contrary: I must protect him from harm. And that includes HIV.

Now we have two children in our family. The second child is HIV-negative. There are no differences in the household due to our “poz” son. We lived as we had before, only happier.

Life with HIV

I was afraid of AIDS. Somehow I was haunted by this notorious “Sword of Damocles”. I was afraid he would get a cold, and wrapped layers tightly around him. I was afraid of allergies and fed him very carefully. I avoided any “risk”.

It happened that upon signing him out of the orphanage for infants, they forgot to inform us of the need to store Kaletra in the refrigerator. After two weeks of being at home, we took our son for his check-up at the AIDS Center. Then I learned about our error from the doctor: the little boy had been living without ARVT for two weeks.

Then we waited for the test results, biting our fingernails and covered in a cold sweat. The results, naturally, were not good: his viral load had jumped to 550! This isn’t critical, but our spirits were crushed. Moreover, the baby caught a cold and was sent to the hospital with obstructive bronchitis. He was treated for a month. A week after his stay at the hospital, he was dehydrated and needed resuscitation. I reproached myself for not reading all the instructions for all three of the medications and I was immensely afraid for my son. My husband was also very worried.

The doctor at the AIDS Center impressed us with her responsiveness and sensitivity. On top of being an incredible specialist, she counseled doctors at the clinic, took care of our son’s condition, and comforted and supported us. And everything turned out fine.

Two months after being checked out of the hospital we had lab tests done. The results showed that the viral load was undetectable! I remember how I cried from happiness. We probably needed to have that experience, that enormous stress, to understand the importance of properly taking ARVT and our responsibility. When you understand the responsibility, the fear dissipates.

Now, half a year later, we can finally exhale. HIV is under control. Our son feels excellently and is developing splendidly. During epidemics of acute respiratory infections he falls sick the least often of all of us, because his medication protects him from HIV. There’s a paradox for you…

Doctors

There were also some mistakes on behalf of doctors. Even though our district doctor knew about our son’s HIV status, she almost gave him a live polio vaccine. Then, whenever we went to have a vaccine or to any check-up, I double-checked everything myself.

We decided that we won’t hide our son’s status from his doctors. I always warn the doctors that disclosing information about an individual’s HIV status is a crime. So far we haven’t had any issues with that.

However, even our favorite pediatrician from the AIDS center warned us against being completely open, even for doctors. Many surgeons and dentists start to tremble at such news. In our enlightened age this topic remains in the dark and evokes fear in many people. This includes medical personnel who should have a clear head and steady hands at work.

Status Disclosure

I was afraid of rejection and aggression. And I’m still afraid. My sister, upon learing about my son’s diagnosis, said that we had no right to decide ourselves whether or not to adopt a “dangerous” child. We haven’t seen each other once since then. She still hasn’t met my son.

Of course, very few people decide to come public with their HIV status. If it were about me, I wouldn’t hesitate for a second, knowing that keeping HIV a secret further perpetuates ridiculous rumors and fears. But we’re talking about a small child here, one who has dealt with a lot besides this.

This is still an unanswered question. We would like to prepare our son for life with HIV in our society. To give him the necessary knowledge, love, and support so that he could make the decision to disclose his status himself, or to maintain its secrecy.

The future holds school. We still haven’t decided if he will study in a regular school or if we will homeschool him. There are arguments both for and against both.

For the sake of objectivity, we have to recognize that of the relatives, friends, and acquaintances that are aware of our son’s HIV status, the majority of them have supported us. They didn’t stop communicating with our family; they interact with our son and play with him.

To this day the news is taken calmly and rationally by doctors that treat our son or who run tests on him. This gives us great hope that with time, our society will start to change in terms of its perception of HIV, and that this topic will cease to be forbidden and “dirty.”

Fears

Of course, I have some distinct fears. I am afraid that the medication will become inaccessible. Right now this is certainly the biggest fear. Besides the great need for constant ARVT, when looking at the economic situation in our country, it’s simply terrifying. And how the number of infected citizens is growing exponentially. One doesn’t need to be a prophet to understand that our society has approached the line that is indeed the “point of no return.” What is more is that we have been blind to it… That is what is really scary.

Compared to these, the small difficulties, like, for example, getting a child to take his medicine each day, simply fade away. Somewhere in a parallel reality more and more effective treatment exists and it appears again. For me the limit of my dreams is belief in tomorrow. That I will arrive at the AIDS Center and receive another prescription of these life-saving medications.

There are many more challenges and fears. I’m afraid of my son growing up. That infamous “difficult” age will come and once again he’ll have to reevaluate himself and his diagnosis. Accept it. And learn how to live with it. Oh, how hard it is! What’s more is that this topic is intricately linked to another, no less difficult topic: rejection from his birth mother…

The Future

We aren’t keeping adoption a secret from him; according to his age we will share our son’s story with him. We try to reconcile with his past so that it doesn’t cause horror or feelings of rejection. We explain, for the time being, with our fingers. And we pray that he will have the wisdom and power to overcome and accept it all. All that we can do right now is to be near him.

And in fact, everything has been solved. It’s just that one case is more challenging, and another is less. Our situation and the diagnosis is not the most critical case. Believe me, HIV is not a death sentence. You simply must love more. And don’t be afraid. What’s the point of all this? Try to give more. I think that’s the only way.”

Source: http://evanetwork.ru/en/you-simply-must-love-more-the-story-of-an-adopted-boy-with-hiv/