Winter 1995 (3.4)
The Thalassemic Child
A Mother's Dilemma
by Aida Hasanova
It's so difficult to have to accept the idea that your child has an incurable disease. And it's even more difficult to cope with the feeling that you're responsible for such suffering and pain. Thalassemia is an awful inheritance to "present" to your children. I have always felt guilty in front of my daughter.
Every morning I wake up with the hope that today I will hear of some new treatment for this disease. Before I fall asleep at night, I ask God to enable the scientists researching this problem to find a cure.
How is it that such a clever, good-looking, and normal-appearing child can be so doomed-it's unbearably painful and unfair. It is very difficult in our country these days to medically assist these children. The Republic is in an economic crisis, and thalassemia needs considerable financial support and wide scale coordination as medicines are not easily accessible within the country, blood donors are hard to find , and the needed blood reactives and related equipment is so expensive.
It's a formidable task to bring up sick children properly. You can't punish them. You can't shout at them because you feel so sorry for them. Yes, I have another child who is older. He's a healthy, ten-year-old boy. But he always asks why his sister is allowed to do the things for which he gets punished. How can I tell him that his baby sister is incurably ill?
What kinds of games does she like to play? Well, what else but "Doctor and Hospital". She likes to "treat" everybody. She shows incredible empathy and sensitivity for her "patients", not seeming to comprehend that she is the one who is so unfortunate.
And then she'll come and suddenly throw her arms around my neck, snuggle close to me, and look up at me with eyes that plead, "Help me, Mom". A mother can lose her mind and go crazy from being so weak and helpless.
Aida Hasanova is a Member of the Board of the newly formed Association of Parents with Thalassemic Children in Baku. Her three -year old daughter, Nargiz, has thalassemia.
From Azerbaijan International (3.4) Winter 1995.
© Azerbaijan International 1995. All rights reserved.