A couple of days back I was working on an article for work and was busy reading up a lot of research articles. The one I was reading on was about a mother’s life with her two daughters, one of them is suffering from cerebral palsy, a condition that has made the daughter unable to walk, talk, respond, do anything – basically she is incapable of any activity and has to rely a 100% on the assistance of her parents and care-givers.
Though the girl has now turned 15, she has the mental ability of a 2-year-old, a condition that doctors have told the parents will not improve.
I know this may make many of you out there sad, or even not wanting to read further. That’s perfectly fine. In India, discussing such topics is still quite difficult, as many people have different visions of how the child may be, what kind of a life do such children and their parents and families have, and of course, there’s the on-going debate of whether such children should be put to sleep at an early stage or whether they should be forcefully made to lead on their ‘difficult’ lives. If you’re wondering which of the above topics I am going to choose to talk about, I’m getting on to something different.
While I was reading the article, I came to the point where it was mentioned that the parents have now approached the judicial system to ask for a permanent removal of the girl’s reproductive organs and to give her a medically-treated life that will not let her get pregnant.
Just to let you know, this family lives in the US, not India (I’m not aware if this kind of a situation has come up in India yet, I am only aware of the one where the parents of a foetus had given an application to the judicial system asking for permission to terminate the pregnancy as doctors had clearly told the couple that once born, their baby would forever be on life-support and other help – I’m not getting into any more details about it here).
The thing with this couple, the one who have asked for permission to remove their daughter’s reproductive organs, is that, while many people have understood where they’re coming from, many have immediately jumped on to make a judgement that this is a case of horrible parenting, that no parent can have the right to decide whether their kids will go on to have kids or not.
As I was reading, I began thinking of how much we actually decide for our kids on a day-to-day basis. My daughter is now all of 5, and there are many things about her life that I decide without asking her. I have always been careful about the kind of friends she makes, I have always monitored what kind of content she watches on TV and movies and what games she plays on-screen, I have ensured that I always keep the channels of communication open with her so that I am aware of what she is learning and picking up from people around her.
I won’t say I’m taking control of her life entirely, but yes, even when I make decisions for her, I make sure they don’t seem too over-bearing, or that they are done in a way that my daughter understands the logic behind it. I know I can’t make her decisions forever, even though I will remain her mother forever, there will be a time when I will have to hand over control in her hands, and that’s only fair, and I want her to know that time when whatever she chooses from life will only be good and fair.
I can definitely understand what the parents of the girl might be going through. As she went on to say in the article, her daughter, who can’t even wipe off the snot off her face or remove a fly or insect that’s troubling her, is the center of her life. Of course, there are days when she feels frustrated, when she wishes she had a normal life instead of having to look after a 15-year-old for the rest of her life, 24 hours of each day of her life.
Her daughter still wakes up about 10-15 times in the night, and the mother doesn’t remember when she’s had a decent sleep in the past 15 years. I completely understand her point when she says that her daughter growing up, facing hormonal changes and becoming pregnant will be too much burden on a girl whose mental level will always remain at the same stage as that of a 2-year-old.
I am lucky to have a healthy child, and I know that we are truly blessed when we have kids who are capable of taking care of themselves on their own. It may sound selfish, but what I mean is that for a parent, nothing can be more troubling than not knowing how well their child will be taken care of once they are gone. I am blessed because I will not have to worry on that front.
I still continue to make many, and major decisions for my daughter on her behalf. I know these will decrease over time, but I don’t think they will completely go off in the near future. I just hope that my daughter understands that whatever I do for her is keeping in mind her best interests, and that I remain true to that myself.
Debolina Raja Gupta loves being a mommy and best friend to her 5-year old princess. A working mom, voracious reader, social activist, photographer, poet, travel freak, beauty writer and an everything-of-sorts. Best fun is story time and our fashionista time together. My blogs: The Book Worm, A Few Thoughts Here And There, My Little One And Me, Beauty Makeup And More.