Three and a half years ago something happened in Rabia’s life that, for a while, turned her life upside down. She was blessed with a beautiful baby girl who she named Alia. Soon after Alia’s birth it was discovered she suffers from an extremely rare form of genetic mutation called Apert Syndrome. The syndrome causes fusion of some skull bones and prevents the skull from growing normally which affects the shape of the head and face.
“Within twenty four hours of my baby being born I knew that she is going to have no one to support her. Within forty eight hours I had told myself that my daughter will have to fight a battle in life and I will fight it for her and with her.” Rabia soon found out that there is no medical, physical, or emotional support available in Pakistan for parents in her situation. Rabia’s commitment to herself that she will raise Alia to be an independent and emotionally stable member of society is what eventually gave birth to ‘Special Needs Pakistan’, an online support group for families and mothers who are raising children with extra needs, and invisible or visible disabilities. The one biggest challenge that Rabia says parents needs to overcome is the self-pity they put themselves in. “The day you pull yourself out of pity, guilt, and emotional distress is the day you start to get strength. You realize that those feelings come when you are putting yourself ahead of the needs of the child. The needs of your child come first. You are the only advocate they have in life and they are the ones who have to deal with their disability for their entire life. Once you pull yourself out of that zone you understand that there is nothing that you cannot achieve.”
That, however, doesn’t mean that the parent doesn’t take care of themselves. Rabia is a big advocate of knowing yourself and understanding your own needs first. According to her, if you are not able to keep yourself happy then you will never be able to keep anyone else happy. One of the biggest hurdles to that happiness, which is deep rooted in our culture, is what everyone else has to say about you and your child. “How do you take your child out of the house? Did you do some gunah? Did you go out during solar eclipse? Do you have a cousin marriage? And the list of questions goes on and on. Even with healthy children people are constantly questioning. If my son, who is seven, is doing well at school they will ask why he isn’t doing well in sports etc. The point is to take yourself out of the equation. Understand that it’s not about you. It’s not about something you did. It’s about your child and her needs. People will always talk. Let them talk and continue on with your work.”
Rabia’s work involves going to schools and communities to raise awareness about these issues. She knows that parents try to keep their children away from children with special needs. So it is of utmost importance that both parents and children are educated on this topic. It is her mission to ensure that all children are able to walk the corridors of society as strong and free willed human beings and not worry about hiding behind walls.Rabia is waiting for the day when as a nation and as a society we are able to raise compassionate children who will in turn become compassionate adults, giving everyone an equal opportunity to shine. And with the resilience we sense in her voice there is no doubt in our mind that this Miracle Woman will one day make her dream a reality.