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MamaLA: What Conjoined Twin Josie Hull Taught Our Family
Soraya’s oldest daughter, Siena, and her group of friends are your typical gaggle of tween girls. They love school and spending time together, and Instagram and Vine are newfound pastimes. What makes them unique is their close friendship with Josie Hull. You may remember the story of Josie and her sister, Theresa. They were born in Guatemala conjoined at their heads. Their birth made headlines as did their successful separation in 2002 by a team of expert doctors at UCLA. Josie was adopted by her mom, Jenny Hull, shortly thereafter and has grown up with Siena and their group of friends in Los Angeles.
What strikes us about this friendship is not that the girls would choose Josie as a friend—she is a warm and extremely social 12-year-old who enjoys the usual 12-year-old girl things—but how little they make of Josie’s differences. If you asked the girls about being friends with a child with special needs most would ask what special needs are, because, to them, Josie’s seizures are now normal. In fact, they are so commonplace they don’t break conversation. On a recent beach day spent on Balboa Island, the girls went swimming and splashing around in the bay. Josie is an excellent swimmer, but the girls stayed close by so that if a seizure should hit, they could make sure Josie’s head didn’t dip underwater. On sleepovers or at restaurants, the girls flank Josie so that they can be close by in case of any problems.
Josie’s mom, Jenny, credits her daughter’s can-do attitude with her ability to live a full life after such an intense surgery and separation, but Jenny is a big part of Josie’s social success. Jenny adopted Josie and jumped right into building a community. She enrolled Josie in preschool and then elementary school, signed on as the leader of her daughter’s Girl Scout troop, and got busy arranging play dates and swim parties. “Everyone has special needs when you really look at life.” she says now. “It’s all in people’s attitudes.” She and Josie don’t focus on what Josie cannot do but instead make the choice each morning to get up and be happy that Josie can go to school, ride her Standing Dani (an engineered people-mover that she operates on her own), and enjoy the fun days filled with friends and family. We should mention that Jenny and Josie have the tremendous support of a close-knit and loving family with grandparents, great-grandparents, uncles, aunts, and cousins who are part of their daily lives.
Josie may be the one with “needs,” but she contributes to her circle of friends in every way, and what we have learned from her has transformed our family’s outlook on life. As moms, we know that life’s lessons are often best learned in practice and not in preaching, and we’re grateful our children have an example of strength and positivity in the face of challenges. We hope that her story inspires you to look for opportunities to reach out and include kids with special needs into your lives, too. The message Josie’s story taught us is simple: we all need each other in different ways and being special is, well just that, special.
With seven children ranging in age from nine months to seventeen years between them, sisters and bloggers Yasmine Delawari Johnson and Soraya Delawari Dancsecs are experts at parenting in L.A. They take a break from PTA board meetings, cooking, and producing films to blog at CityThink each Thursday.