Talking it over with Seema Aunty
Tuni is her name, but I added “Harrison” as I do for the kids with disabilities who have no surnames. Having a chart read, “Baby Tuni” is not as good as “Tuni Harrison.”
Tuni is about seven months and has Down Syndrome. At about three months of age she was hospitalized in a government hospital about four hours from Kolkata. I don’t have records of why she was hospitalized, but we were told her family never came back for her and never responded to calls from the hospital. That district has no facilities for children with disabilities, and was one of the children the Child Welfare Committee pleaded with me to take. We picked her up last week, on Friday, the 19th of July. I knew in taking a child with Down there was a possibility she would have other medical problems including heart disease.
Today I took her to Medica Superspecialty Center to see the pediatrician for a check-up and to start whatever investigations were in order. Tuni was a charmer. Yes, she has heart disease. She was seen by the pediatric cardiologist, the same one who saw Ganga in the past. He did a brief echocardiogram, enough to see that she has a “complicated heart situation.” Tomorrow I take Tuni back for a more thorough testing under sedation. And then we will talk… as the doctor put it.
So much goes through my mind. Is it fixable? What will it cost? How will we manage it all? I dare to even think, should we do it? And then I get mad at myself for even asking. I think about her family. Maybe this is why they abandoned her. Maybe they couldn’t afford treatment. Maybe a mother is mourning. Or, maybe it was just the Down Syndrome… but they did put her in the hospital. I hold no judgments any more. This is a harsh place with harsh realities. You don’t take a child to a government hospital unless you have no other alternatives.
This work has changed me too. I now more easily see the person separate from the illness. When I hold her and talk to her, I ask her, “What happened to you, Little One?”
Looking worried… with reason.
Good night from Kolkata at 12:50 am. I need to get some sleep before the day begins. Lots on my mind….
Jul 25, 2013 @ 01:02:08
Tuni looks beautiful! Please keep us updated on her progress.
Jul 25, 2013 @ 07:05:47
Well she looks healthy and her color looks good (from here! haha) so that’s a good sign… she is very cute. I wonder if her parents knew she had DS before taking her in to the hospital.
Jul 25, 2013 @ 08:21:40
You are in the front line assessing everything first hand. But your report on CWC’s visit made me queasy in spite of it being a ‘beautiful visit’. Now you have Tuni. I don’t want to sound uncharitable, but I’m afraid CWC will continue unloading children they cannot handle. Somewhere along the line there must be some kind of ‘quid pro quo’ in this which should spell long term benefits for SS and the children.
Jul 25, 2013 @ 10:00:30
Thank you all for your thoughts. I also wonder if her family knew she has DS. Dipak, I truly value your thoughts and worries. We are AT that moment of quid pro quo and they know it. I have said no many times before. I just looked back and saw that I started the blog in July 2007. The children came in February 2007. In May 2007 I was told I had to take 4 more, non-orphans. An order had been written that no one told me about. I refused, much to the terror of my board, who couldn’t imagine saying no to the government. The gov threatened to close Shishur Sevay and take away the children. I told them they would have to kill me first. They threatened to bring charges against me for discrimination against children with parents. I kid you not. I lived in fear but refused to give in. It would have broken this place at that time. I slept by the door at night, terrified they would actually try to take the children.
My decision to take the two children last week was strategic. The ball is in their court. I insist we remain inclusive. The CWC said they had two children for us, non-disabled. The expression used here all the time is “Let’s see…”
Dipak, thank you for keeping me on my toes. I really do appreciate hearing from you..