It has been nearly three years ago that I met my little friend, Francois D'Assisi.
He was just three at the time, a toddler, and now we estimate that he's six (he was abandoned in some banana trees when he was an infant, so we don't know his exact birthdate).
The happy moments have been punctuated by periods of intense sadness and anxiety, mostly about his health and future. D'Assisi is HIV+, and although he is consistent about taking his anti-retroviral medication every day, he has gotten very sick in the past and we do not know what his life expectancy will be.
His health had generally been fine for awhile, until a few months ago when the nuns noticed that he had become increasing forgetful: leaving his pen and notebook at school every day or forgetting about a new toy that I'd gotten him the day after. They decided to take him to a hospital in Kigali, the capital, about 7 hours away. They gave him an MRI, which found lesions on his brain. I cried the entire night after seeing his brain images.
The last almost three months since that discovery have been a blur for me, trying to navigate the Rwandan healthcare system with him. After the doctor in Kigali found his brain lesions, he told D'Assisi and the nuns to come back in 6-8 months if things got worse, and gave them no answers to why the brain lesions were occurring. I was heartbroken, and furious, and determined.
|D'Assisi trying ice cream for his first time after a long day at the hospital in Kigali. He was not a fan.|
|Does it look like this kid can wait four months for another appointment? Didn't think so.|
The last few months have not been easy, but we are trying to stay positive. Our next hope is to take D'Assisi to a hospital in Nairobi, Kenya, where we have found a pediatric neurologist, and get the cytometry flow test. The nuns applied for his passport a few weeks ago, and we're waiting for that to go through immigration before we can buy a plane ticket.
There has also been a lot of uncertainty on our future together, beyond medical treatment. I have known for a long time that I want to adopt him, and the nuns fully support that decision. I finally decided to go through with the process (after being told different things by different people, including Rwandan lawyers: that it was illegal for foreigners to adopt, that I had to be married, etc.). I had an appointment with the local government to see what was possible, and was told that I had to be 35 to officially adopt him. AKA, 10 years from now. AKA, when he is 16 years old. But, I could become something like a legal guardian for him (which would allow him to come live with me and for me to raise him; I couldn't make medical decisions for him or give him US citizenship). Depending on how his testing and treatment go, the nuns and I are planning to let him spend part of his time at my house (just weekends at first) in June.
I spin the situations around in my head when I'm lying in bed at night. It's a dizzying game to play, with endless possibilities. In the meantime, I'm trying to do the only thing I can really do: love him, even in a time of uncertainty.