It was a difficult time. In the eyes of others, it still is. It seems like yesterday when our darling “Bitto”, Fatima was perfectly fine. However, successive bouts of fever and doctors’ delayed treatment have left our little three-year-old angel bedridden.
It is not easy to care for a child with mental or physical disability. Mothers and carers who selflessly look after these unique children and adults deserve the highest praise. Then there is the compassion of people like the Provincial Minister of the Punjab province in Pakistan, Fayyaz Chauhan who believes that disability is a punishment for one’s sins. Which mother, myself included, hasn’t heard these pious, religious women who are hell bent on declaring that our disabled children are a punishment for our sins by Allah?
I do not understand the nature of these mothers that they enjoy dwelling on thoughts of ‘punishment’. They spend the golden years of their lives in a struggle that is fruitless in this world. There is a saying of Prophet Muhammad (peace be upon him) that the gender of a baby is written in its father’s destiny. So why is this sin associated to mothers? Why doesn’t anyone tell a father that a disabled child can be a punishment for his own sins? Why must the mother always be sinful?
My three-year-old daughter has undergone eight surgeries and recently contracted a shunt infection. While she was being transitioned from ICU to the ventilator, doctors advised us to stop the treatment and leave matters to Allah.
As my facial expressions changed, the doctor further explained, “I know this is your first child. Today she is young, but when she grows up, you’ll have to clean her urine and faeces on the bed.”
I never expected this coming from the neurosurgeon working in the biggest private hospital in the city. I do not know where I gathered the courage from to reply, “To you, she might only be a patient, but to me, she’s not only my first but my only child. Even if I had ten children like her, I would never stop their treatment. Life is given by Allah, and it’s in His control when to stop our breaths, so I’ll never kill her by not letting her get treated!”
My daughter and I very fortunate to have supportive people in the form of my mother and siblings who encourage my daughter at every step of the way. That is why, just a few days after her surgery, Fatima began to return to life. The whole house is ready to become clowns just to see her laugh once. When she calls me Amma [Mother] and hugs me, she brings all the joys of the world to me.
Dr Khalid Jameel Akhter is a name that does not need any introduction when it comes to the rights of people with disabilities. Talking to him some time back on this subject, he said, “For the last 30 years, we’ve been trying to change the way people think about those who are ill or disabled. However, those who present themselves as being religious, have this negative thinking. I feel very sorry for the mothers whose first child is born disabled, because this woman who’s just become a mother is drained taking care of the child. Ninety percent of the time, sick and disabled children who come to us for treatment are accompanied by their mothers, uncles or aunts. The father doesn’t feel responsible or just gives money and thinks that his duty has been fulfilled.”
I have been very fortunate to have God-fearing siblings who did not let my child’s disability be a burden. My sisters have played a bigger role in making her life easy but not every woman is so lucky.
While visiting hospitals in the last few years, I have met mothers with such burdens, that I feel I have no problems in comparison to them. These mothers without any support and out of love for their children are battling with difficult circumstances. I shudder to think what they go through.
Dear mothers, I know it hurts. You complain to God too. But look at the other side of the picture. These very people give us a reason to live. So let’s move forward and just think for a moment if these disabled children are a punishment for our sins, then what about those rapists, the killers of Zainab , paedophiles, people selling their children for money and those killing their parents for wealth… are they fruits of good deeds?
Dear mothers, stop thinking of these diseases and disabilities as God’s wrath. Your children are unique, do not lose hope. People might try and stand in our way like mountains and wait for us to fall flat on our faces and cheer, but standing strong against all odds is the only guarantee for your child’s life and health and it’s not easy to stand firm.
The responsibilities of mothers who raise children with special needs increase every day. Their interests and desires aside, their families assume that the child’s bathing, feeding, being taken to the hospital, everything is only a mother’s responsibility. The in-laws are either repenting and praying or keep expressing their concern out of worldly fears, but when it comes to taking responsibility for a child with special needs, they hesitate.
In this frenzy, mothers not only grow old but fall into depression too. Remember, if someone around you is upset or troubled, do not just think it is their test, it is yours too!
Dear mothers, raising children with special needs is a remarkable act that might not get you any praise in this world, but it has the greatest reward in God’s court. Nevertheless, remember in all of this, to always take some time out for yourself and if you can find meaningful employment, so much the better.
Even if circumstances do not allow, try meeting relatives, go out for a walk, go shopping and take the children along. Engage in whatever you like doing, make up, listening to songs, praying, watching TV, just make sure to always step aside from your responsibilities for a moment and take out time for yourself.
I know it is hard, it is very hard but it is not impossible. You are not doing this for yourself but for your child because your happiness and wellbeing is important to your child’s health.
To end a child’s disability or pain is not in your hands, so why be bitter about this helplessness? Rather, you should always keep in mind that the child’s mental and physical health is dependent upon you. Would you want them to grow under a roof that can collapse anytime? What would happen to them if you fall?
This thought can inspire and motivate you to live. Remember, a healthy child is a mother’s love and is the darling of everyone: the father and the grandparents. But a child with special needs doesn’t belong to anyone but the mother.
It is true that everyone is proud of winning, but the ones who do not lose hope even after losing, are the real winners indeed.
This article first appeared on our partner site, Independent Urdu
Translated by Tooba Ali, Edited and proofread by Celine Assaf