No Boundaries

On August 16, 1991, I returned to London after a two-week trip to visit my dad and my grandparents in Kolkata, India. My grandfather had recently had a stroke, and I needed to get to Kolkata fast. The cheapest way? Fly Aeroflot–via Moscow, Sharjah and New Delhi, eventually landing in Kolkata. I’ll never do it again. Passengers with duty-free microwave ovens in the aisle; toilets being shut down in mid-air because there was no longer any water; smoking anywhere; only the hardest pieces of bread for food; and my favorite–no assigned seats, so you better fight for one!

Lucy and Ben, Giza 2007

Despite feeling quite poorly after my return, I mustered enough energy to make one last visit to our usual Gilbert and Sullivan pub in Covent Garden, as a farewell to my summer roommate Mimi who was soon returning to graduate school. I absolutely did not want to go out, but Mimi insisted. That very night, I was introduced to Sherin through our mutual friend Garry. This is how our love blossomed during our first conversation: Sherin: “Where did you go to school?” Me: “Michigan. Where did you go?”. Sherin: “Michigan State”. Me: “Oh”. [Turn away, go find Mimi.]

Such was the promising beginning to our courtship. When Sherin later that evening suggested that the group go out for an Indian meal after the pub, as is the English tradition, I screamed “NOOOOO!” (we went out for Chinese instead). When Sherin told me he loved Woody Allen (yes you did!), our future was solidified. We got married on April 23, 1994, eighteen years ago today.

One thing that I’ve always loved about Sherin is that he is a true mixture of race and ethnicity, as I am. He was born in Cairo to an Egyptian father and German mother–and grew up in Nigeria before coming to the U.S. to attend Michigan State. So when Ben was thought to have a genetic disorder, you can imagine how bizarre this was–how can two people, with such diverse backgrounds, whose children had 4 grandparents from 4 different continents, have anything genetic in common?

In May 2003, after meeting Dr. Hal Dietz at Johns Hopkins and finding out that Ben had Schwartz-Jampel syndrome–the culmination of almost 21 months of searching for this genetic answer–Sherin and I learned that we most likely share a mutation on the perlecan gene on chromosome 1, the result of which is SJS. Since SJS is autosomal recessive, every child we bore would have a 25% chance of having this condition. Lucy and Charlotte are in the 75%; Ben, obviously, is not.

Scientists are just beginning to understand how our genes can predict how we respond to adversity–had this part of Sherin’s genes been examined during genetic counseling, we could have received “good news” along with the bad. Sherin has always been extremely clear about his love for and dedication to Ben. There hasn’t been an activity that Sherin hasn’t made work for Ben–laser tag, swimming, soccer, gymnastics, trampoline jumping, ghosting. If Ben wants to do it, Sherin will find a way. When 5-year-old Ben’s love of planes and flying was comparable only to his love of geography, Sherin took Ben (and Lucy), by himself, with suitcases full of medical supplies and equipment, to Egypt to visit his parents (not by Aeroflot). When Ben is invited to sleepovers, Sherin goes along to make it happen. When I worry that Ben might injure himself, it is Sherin who reminds me that Ben needs to be a boy–and when Ben does his wheelies in his walker, or does spin outs over ice in his wheelchair, it is Sherin who has taught me to either close my eyes or keep my mouth shut and let Ben have his fun.

Thank you Sherin for being my rock, my best friend, my chicken curry maker, the person who can rise to meet any obstacle when I cannot, and the greatest dad our kids could have asked for. When Ben tells you “Daddy, you’re the best!”, we ALL know this is right.