It was a happy day when I had my second baby boy. Everything was so beautiful and new. But, on the third day my baby fell ill with a stomach infection and started having motions. By the fifth day he was totally dehydrated.
Then began the rush with high dose medicines. A cut was opened in his vein and drips were administered. We were all praying. Seeing my three day old braced with medical paraphernalia made me anxious and nervous.
God heard our fervent prayers, Rizwan recuperated. All seemed to go well till he was 7-8 months, but then we realized that he still could not balance his head. From there commenced a saga of many trips to doctors and hospitals. My June (Rizwan) was diagnosed with cerebral palsy. This came as a shock. Honestly, we had never heard of it before. After recovering from the initial shock began the reality of everyday life. June was special, so every thing in our life became different.
|l-r, Shaheen,Itrat, Nusrat, Arshad, Abid|
I had five more children after June. Each of my newborns had June as a playmate while they were growing up. There were always two feeding bottles, one for the toddler and the other for June. As June’s brain was not developing much, it was always the younger sibling who had to sacrifice his rights for the benefit of June.
I still remember an incident, when I was visiting a friend with June and his younger brother, then a two-year-old-child. I had June in my arms and the younger son by my side. The younger son asked me to pick him up but I said “beta please walk the distance I can’t pick the both of you together”
This was the day when I vowed never to go out with the children unless I had an escort.
|June with his Pappa and Nanna|
My husband and my mother were always a pillar in bringing up June.
With six children going to school and June still a baby, life was not easy. School going children had their own needs and June also needed full attention, he was always very hyperactive. There was constant chaos in the house. “Mummy, June has chewed my eraser”, or “June Bhai broke my pencil” or “tore my book”, but it was always the sensible child who was reprimanded for not keeping his or her things properly.
All children were made to understand that June was a special brother and that they had to insure that he didn’t get into trouble. Despite this pressure, my children excelled in their studies and extracurricular activities in school.
We had our special moments with June. He was unable to walk till the age of 6-7 years. So the slightest change in his behavior was a moment of joy for the whole family. His first staggering steps, his response to his name, the way he handled his toys with intelligence or just playing with his ball or balloon filled us with happiness and joy.
When June suffered the whole house was sad, and when he was happy and playful everyone’s spirits soared. Our lives started revolving around June. As time passed by June learnt new tactics to express himself and it made life a bit easy for us.
He responds to questions like “where is your bottle (he loves tea), and “sit down”. He loves to travel in his car (he can’t sit on the scooter). His outings mean that he will be bought a packet of Chips and he waits for it patiently. Dare you forget to buy it and drive past the shop; a tantrum is bound to happen.
So this in short is life with Rizwan, a little child (as we call him). Life was and is still an uphill journey but all of us are very proud of having Rizwan in the family and we are proud of him.
What hurts then is when you realize that other people don’t look at him as special in the same way as we do. Recently, when my daughter and me were trying to fly with him to Mumbai – the ground staff at Indigo Airlines didn’t allow him to board the flight. According to them he was a threat to the other passengers, as he could attack them.
But June had already flown with the same airline twice before and all had passed off peacefully. We even had a medical certificate that deemed him ‘fit-to-fly’. But what was worse though was that the ground staff was completely awful in their behavior – making jokes about how this crazy boy can make the plane crash etc. It seemed that because both June and I were on wheelchairs and were not accompanied by an able man – we could be bullied and taunted.
This is a recent incident, and it has left a bitter taste in my mouth. We’ve met some wonderful people over the years, but it takes just a few insensitive people to shake up your faith.
|Our Strength, June's Father|
Rizwan was very fond of his maternal grandmother and his father. Unfortunately, he lost both of them within a span of 7 months in 2009. God rest their souls in peace. It is in moments like these, that my mind longs for their support, even though I know I find my inner strength from their Blessings.
Rizwan is special and all I want is to protect my son and to not allow anyone to snatch his fundamental rights to travel and his fundamental right to expression.
My son is lucky, he has the support of a loving family who are ready to fight for him (we have served a legal notice to Indigo Airlines & have also filed a public grievance) but there are many who lack the means to fight back. Who will help those people from humiliation at the hands of people like the ones at Indigo Airlines?
|Memories and photographs|
Rizwan in the Islamic theology is the angel at the gateway of heaven and truly he is our gateway to heaven. I thank God for choosing me to be his mother. Thank you God.
(Article written by Meera Jafri, originally in 2009 for Tehelka's last page; post the Indigo incident. I'm not sure if it got published)