Hello All,
We have had a boy, Will, in the foundation since early 2011. He was about 12 when he began coming to the foundation. I could write an update on Will alone, I 100% know he would be a thug by now if he hadn’t joined the foundation. He actually went at another boy with a knife early on in his tenure with the JRF, but this update is about his mom and family, not him. He has 3 younger siblings, all of whom started at the foundation in May 2013. They are 7, 8 and 9 years old.
The children’s father is dead, apparently of AIDS. Their mom, Mary, has always been sickly looking, so about a year ago I told her that I thought she should get an AIDS test and that we should have a plan in place, in case she dies. I remember being pretty nervous about having that talk with her and when it was finished I felt relieved. What I did not take into account was that a much more difficult talk was coming. Mary can’t read and is too embarrassed to tell anyone else that she is sick, she hasn’t even told her kids or best friend yet. A few days after sending her to get the test, she brought me an envelope and I immediately realized what I was about to have to do. I brought her into the office, told her that she had AIDS and wouldn’t live too much longer. I originally went with 2-5 years but she was incredulous so I went with a blanket “if god wants it could be 7 or 10” reassurance. Haitians and Dominicans are very much followers of the “everything that happens is God’s will” philosophy, and I have found when breaking bad news it often helps to throw in “if God wants x then it will happen”. I’m still not sure if that is a weak or kind thing to do.
Around the time of this diagnosis we decided that we wanted to give the kids at the JRF a banana with lunch. I immediately thought of Mary, and since then she has been purchasing and delivering bananas to the foundation almost every day. If I’m being honest she is frequently short some bananas and misses some days. If it were anyone but Mary I would fire them and find another parent but that is just colder/harder than I want to be over some bananas. She also eventually learned to make belts, which she does well, creating a second stream of revenue for her household.
Sons of Neri, Wilgensi and Yubensli, play with their little nephew, Nelson at home.
We got her into an aids program in the neighboring city, although I am 90% positive that she only took the drugs and went to her check-ups for a few months. The original plan for her kids upon her death was to pay her oldest daughter a monthly fee to take them in.
When Catherine and I arrived in the Dominican Republic on January 7th Mary was very ill. She has been taking care of her oldest daughter’s infant for 6 months or so. When Catherine and I first got to her house she was in her bed, dying, and her daughter’s malnourished sickly baby boy was lying next to her. Both Catherine and I agree it is not an image we will soon forget. The mother of the baby, Mary’s oldest daughter, will not take care of her own children and is certainly not the person who will be taking care of Mary’s boys.
Seeing Mary in bed like that and knowing what was happening was tough. I have seen and dealt with enough misery that the thought of her dying wasn’t what was troubling. She is going to die within a year, probably within a few months, maybe within a few weeks, this just is and has to be accepted. What was troubling was the thought of her boys finding her body and the decision of whether or not to get her medical care.
Worst case scenario is that Mary dies when Catherine and I are in the States or about to go to the States. If we are not around its probable that her boys will end up sleeping in the streets until we get back. Worse than the danger or cold of sleeping in the streets (these are tough boys, they could deal with the discomfort) would be the mental damage a 6, 8 and 9 year old would suffer after seeing their mom die and being abandoned to the streets. Regardless of these boys’ ultimate destination, Catherine and I will take them in for a month or 2 when Mary dies. It feels critical that they be with us while initially dealing with Mary’s death. January to April is one of our longest stints in the DR, so part of me thought it is Mary’s time and we should let it happen. I had no idea of the cost of getting her to a hospital and keeping her alive or if she even could be kept alive. Then even if we spent a bunch of time and money to cure the Tuberculosis that was killing her, how long would it be before she is in the same spot, dying in her bed because her body has no ability whatsoever to fight off infection. How much time could we even buy? Trying to become a school, the purchase of a new piece of land and the cost of sending a kid to be an exchange student in the US next year are all contributing to a tight JRF budget and a lot of work for me and Catherine. We simply cannot afford to spend thousands of dollars and dozens of hours to give Mary an extra few weeks or months.
I will not lie, after taking this all into account I was originally going to try to get her medicine to make her comfortable, but let her die or get better in her house. This was the decision as of Thursday, January 8th. Catherine and I visited her again on the 9th and she was worse, we then visited her on Saturday the 10th and she was suffering. Just talking was enough to make her tear up and we just couldn’t leave her like that. We took her to the private hospital where she got medicine, blood work, an IV and a bed. Her kids have been staying with us since she entered the hospital on January 10th. They are great to have around although they are shameless cheaters at go fish. For those of you who don’t know, I occasionally give in to the temptation to cheat in board/card games, I was trying to play go fish straight, but when such rampant cheating abounds one has to be pragmatic.
As of Saturday the 10th she had 3% of the white blood cells she should have had, and she was no more than 48 hours away from death if she didn’t receive medical care. After one night in the private hospital we had spent roughly 150 dollars. Our options were move her to a public hospital in a neighboring city or send her home. Catherine and I laid out the options to Mary, we told her she probably wouldn’t live another year, that if she went home she would probably die within a few weeks or she could go to the public hospital and might live a few months or year. She decided to move to a decent public hospital in a neighboring city.
The doctors are generally not around and do not have a fixed time that they come. When I go and ask about Mary I am told to talk to her doctor, when I ask where she is I am told not around and when I ask when she will next see Mary I am generally given a 4 or 5 hour time block.
I had a contract made that makes the JRF and myself the guardians of Mary’s boys and have been looking into international adoption or local adoption. I do not know what we are going to do with Mary, she will basically do whatever I tell her to do. Whenever I ask her opinion she just tells me I am the one that knows best. She only has to pay for drugs in the public hospital, so the costs are not out of control, but the hospital is 45 minutes away and we simply don’t have the time to run/grow the JRF, grow Good Threads, become guardians of her boys, take care of her boys and take care of her. After over a week of trying I was finally able to give her blood yesterday, luckily we were a match on blood type. We are hopeful she will be able to go home today or tomorrow.
Neri’s boys and Catherine brushing their teeth before bed during their time staying with us.
I honestly don’t know what we will do, I know we made the right decision in not letting her die, but I also know we were not far off in thinking that her time is basically up. I imagine we will have to have another hard conversation and decision in the coming weeks, but who knows, “maybe god doesn’t want that”. I do know that we will not abandon her boys. They are smart, tough, athletic, happy, great kids. They are exactly the type of kids the foundation was made to help and we will do everything in our power to make sure we don’t lose them.
As always thank you for your support, none of this would be possible with you
