Question: As the parent of a child living with Sickle Cell, I once blamed myself and felt guilty. That is no longer the case, however I do fear hearing the words….”Why did you give this to me”.
Answer: I must confess, I did blame my parents…not that I have sickle cell–but that they were ashamed of me having sickle cell. Although Nigeria has the highest population of people with sickle cell in the world, it was still somewhat ‘shunned’ and critiqued because of the lack of knowledge. There were myths that people with sickle cell couldn’t have kids, would die young and no one wanted to marry someone with sickle cell.
Consequently, my condition was kept as a big secret in our family for most of my childhood and youth and the shame made me feel abnormal, weird, and different. My parents had often shared with me that they didn’t know anything about sickle cell then, but even if they did…they wanted me so badly that it wouldn’t have mattered to them. My mom also did tell me that she wishes that she had sickle cell instead of me…(that made me cry).
However, whenever I was sick, my parents were sick right along with me, and emphatically feeling my pain and crying with me. I hated being sick more because I would see how much my crises hurt them, and that just broke my heart.
I hope that your child never throws those words at you, but to me, I know that my parents felt so guilty and regretful already, and I never said it…mainly because I could tell how much they hurt when I was sick. Whatever happens, please make sure your child as an outlet to vent their frustrations with sickle cell. I would have given anything to have a support group growing up, of people just like me…because back then there was so much that I didn’t know and so many emotions that I had that I couldn’t share with others without sickle cell.