My four and half year old daughter Sarina has twinkling brown eyes, beautiful long, black curly hair, dimples like her daddy, a big toothy grin like her mama, and spastic quadriplegia cerebral palsy. She is not defined by her diagnosis, but it is an essential part of her life, and ours. My husband and I have been on a long journey to come to terms with the reality of our lives and have found ways to find the hidden blessings in it. We have formed a stronger bond with each other and our children. We have overwhelming joy at the tiniest of milestones and bittersweet acceptance of watching our younger daughter Aleena move with such ease and grace while her older sister struggles to make her body work. We know we’re not the ‘typical’ family, but to us, we’re as normal as can be.
We go out to the mall, eat out at restaurants, hang out with friends. And we do this as best as we can. Yup, we’re the family with bags and bags of crayons and coloring books, iPads and activities, in addition to the adaptive stroller and booster seat we carry along with us. Every now and then we venture out with Sarina’s walker to give her more practice. You might see us out and about; praising Sarina’s every step, running after Aleena to catch up, watching the girls interact and play with each other. And you might not see us, or, at least, all of us. There’s always that person who sees Sarina, and either pretends not to notice, or watches a little too long.
I can understand-I felt that way myself about 4 1/2 years ago. Didn’t want to seem like I was staring, but was just trying to understand all of the varieties of human beings Allah (swt) created. I would pretend not to see the little boy who was a little too loud while his parents were trying to calm him down. Or the teenager in the wheelchair that was so tricked out that it was practically screaming out for attention. But no, ‘just keep looking straight ahead’ I would tell myself. And now I realize that was the wrong thing to do.
I don’t want people to pretend not to see my beautiful daughter as she makes huge strides in her life. I don’t want people to look away as she struggles and regains her balance and act as if she isn’t there. Or not hear the words coming out of her mouth as she sings her princess songs or tells us about her day. I don’t want people to act as if my daughter is invisible.
I see the ones who can’t spare a moment to repeat themselves or wait for Sarina’s response to a question. The ones who are too busy interacting with Aleena to recognize that there is another child present. They might think she doesn’t know any better. And she doesn’t, yet. But we do. And she will. She might feel that people think her contributions are less worthy because of the time it takes for her to accomplish them. Or she may think that her value as a human is less because of her different appearance. But she would be wrong, and so are the many others who feel this way and act on it.
When you see us in the mall, a big gangly group trying to stay together as we walk the halls, please say hi. Let your kids point and ask, ‘Why is that little girl walking differently?’, and answer kindly, ‘Because that’s how Allah (swt) made her’. After all, “He it is Who shapes you in the wombs as He pleases. La ilaha illa Huwa (none has the right to be worshipped but He), the All-Mighty, the All-Wise)”.
If you see us frazzled parents, trying to manage bags and equipment, please smile at us and our kids. You have no idea how much it means to us. If you see our child in a walker, adaptive stroller, motorized wheelchair, orthotic braces or anything else that might set her apart, just take a second and see her for the unique and wonderful creation she is. And smile at her. And if you’re lucky, and chances are you will be, she will flash a huge toothy grin right back at you. And THAT is definitely worth seeing.
Saba Ali Arian
Saba Ali Arain is an amateur circus performer; juggling two wonderful little girls and a loving husband while whistling a happy tune. She lives with her family in Oakland, NJ.