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Jewish Genetic Diseases: Thoughts from a Bubbie

Jewish Genetic Diseases: Thoughts from a Bubbie

Our life changed the day our grandson Sam was diagnosed with familial dysautonomia. My husband and I are both in our sixties, still working but with the freedom to visit our out-of-town grandchildren frequently, go out as often as we like, take the vacations we never took when the girls were young and then in college. Our friends ask us why we are so involved in our children's lives; isn't there someone else whom they can rely on for help with our grandson? My reply: What greater mitzvah could we be doing than helping our family? What greater joy? Should I volunteer elsewhere and let a stranger take care of my daughter, son-in-law and grandson?

For the past three and a half years I have had the privilege and blessing of spending at least two days a week with Sammy. Before he started preschool I would go to my daughter and son-in-law's house every Wednesday and Thursday morning and spend the day with Sam so that my daughter could work and help support her family, as well as keep her sanity! When Sam was younger and Becky and Larry were figuring out his medicines, blood pressure swings and feeding regimen, we often received morning, night or weekend calls asking for our help, and we never considered not getting there as soon as we could. If plans with friends were cancelled, they understood, and if they didn't, they weren't true friends.

Sam now attends preschool five mornings a week and I pick him up at school two days a week and spend the afternoon with him. Art and I are often with Sam in the evenings and on weekends as well. Sam has taught me wonderful lessons ranging from patience, how to handle a feeding tube (including not minding the inevitable spill), the long-forgotten intricacies of potty training, and the importance of a sense of humor-which Sam has in abundance. Being an integral part of Sam's life has pushed me to do things I didn't think I would be able to do, such as administer strong medicines and operate overnight feeding pumps. I am also allowed to simply be a Bubbie with a wonderful child-we play games, read, laugh and snuggle.

When you have a grandchild with special needs you can approach the situation in two ways. You can say that you're the grandparent and you get to spoil the child, come over for a few hours, and then give him or her back, as many grandparents joke about doing. Or you can say, "This is my family, they need me, and I'm here for my grandchild just as his parents are." I think that every grandparent can benefit from taking a step back, special needs or not, and asking themselves, what is more important than my family?

Debra Skaroff is a Philadelphia native and graduate of Temple University who lives in Plymouth Meeting, Pa. with her husband Arthur. They have five grandchildren, including Sam's 10-month-old sister. Debra has worked in human relations, administrative and editorial positions. She is a member of Hadassah, a past co-president of the sisterhood of Tiferet Bet Israel synagogue and a current synagogue board member, a former guide at the Philadelphia Museum of Art, and a board member of the Graduate Guides group.

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