Ishan my son, my sun (Ishan in Urdu Language means Sun), my world. Ishan was born in October of 2001. I had a normal pregnancy, but the minute he was born my perfect little world was shattered. Ishan came out blue and not breathing. Two weeks after Ishan was born I was given the devastating news that my child had a rare chromosomal disorder called Cri Du Chat Syndrome. I can remember every little detail of that day. It was the evening of the big day, Ishan was supposed to be discharged from the hospital, when the news was delivered. Through my tears my only question was will my baby live?
The first year of Ishan’s life was nothing short of a nightmare. I was working full time, trying to cope with therapies, a constantly crying and sick child with the clinical label “failure to thrive.” I hate that label; “failure” is such an awful word, makes me feel like a loser and that my son is a “failure in life”.
A year later I quit my job. Since Ishan’s birth, my life has become a huge emotional rollercoaster. And it doesn’t get easier as years fly by, because as Ishan grows older the gap between him and his peers just gets larger. The sadness of all the “normal” things that Ishan cannot do still gets me at times. Taking him to the park or attending a birthday party is a traumatic experience for me, as it reinforces the fact that he is different.
Ishan, as it turns out, is on the more severe side of the syndrome. He doesn’t walk (he uses a wheelchair), he is non verbal (he uses a few signs), and needs full assistance with all his self care needs.
Despite all his limitations, Ishan is a very special boy. He is an extremely happy child. And he reminds us everyday that it is the small things in life that matter the most: having a sense of humor, getting tickled, a ride in the car can send him into peals of laughter, eating cold ice cream on a hot day, seeing me after a full day at school can get him all giggly and giddy with happiness, the list goes on and on.
I walk through a toy store and feel lucky when I see other kids pestering their parents to buy them a toy. Ishan is content just looking at the toys, he doesn’t realize he can throw a fit and demand a toy. He doesn’t understand the concept of anger, jealousy, or resentment. He cries only when he is in physical pain.
Ishan has taught me a great deal. I’ve learned to be more compassionate, more patient, and I have become a much more emotional person. I never thought I could love someone so unconditionally. I am today a much stronger person both physically (because I do have to lift him) and emotionally.
My biggest fear is what will happen to Ishan once my husband and I are no longer around. We face a unique situation because we are first generation immigrants and so we don’t have any close family living here in the United States. And Ishan doesn’t have any siblings either. We are still trying to deal with this terrifying reality.
I have heard lots of parents who have children with disabilities say “if they had to do it all over they wouldn’t change a thing.” Well I disagree. I would love to change the fact that Ishan cannot run around a playground, I would love to change the fact that Ishan is unable to talk up a storm, I would love to change the fact that Ishan cannot play on the grass or in a sand box because he mouths everything, I would love to change the fact that Ishan cannot eat a pizza because he can eat only pureed food.
But then on the other hand, if I could change all these things for him, I guess I would also have to change the fact that my little boy is full of innocence, he is pure and unadulterated, and he remains uncorrupted by life.