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Starting Special

Sara Miriam Gross

Some women enter motherhood with a child who, from the very beginning, doesn’t look or act exactly like the other babies on the block. How does having a firstborn with special needs impact the family? Three women share their experiences.

Wednesday, March 23, 2016

WhenDebbie gave birth to her first child, she did everything her friends did: she bought a fancy stroller and an entire wardrobe of cute baby clothes. “I was fresh out of seminary, just 20 years old, and I confess I was used to life going according to my plan,”Debbie remembers. “I thought motherhood would be smooth sailing.” But when her son Shimon was born, there was something decidedly different about him. His eyes, nose, and mouth were very puffy and that didn’t change until around age one. “My mom actually freaked out the first time she saw him,” saysDebbie. “Much, much later, my sisters-in-law admitted, ‘We felt so bad for you. It was your first kid and you were probably so embarrassed to be seen outside with him.’ ” Shimon’s unusual facial features were just the first sign that something was amiss. He also suffered from extreme colic. “He screamed 24/7, and I’m not exaggerating,” saysDebbie. “After a few months of the unbearable nonstop screaming, my neighbors couldn’t handle it anymore and we were kicked out of our apartment.”Debbie went from doctor to doctor trying to figure out what was wrong. “In the beginning, we went for the colic. We were so busy dealing with the crying that we didn’t pay attention to the fact that Shimon wasn’t developing. Had I not been a first-time mother, I would have noticed sooner that something was off — for example, that he wasn’t smiling at four months.” Despite running countless tests, the doctors couldn’t figure out what was causing Shimon’s symptoms. They assumed, by default, thatDebbie was the source of the problem: “You’re feeding the baby too much — that’s why he’s getting stomachaches,” some of the specialists told her. Others claimedDebbie was feeding him too little, or holding him too much. When there was still no improvement by six months,Debbie took Shimon back to the developmental specialist and announced: “I’m not leaving here until you tell me what this baby has.” Remembering that day,Debbie says, “What I meant was, ‘Something is hurting my son — can you figure it out?’ I thought the doctor was going to tell me that Shimon had a hernia.” The problem, unfortunately, wasn’t as clear-cut as a hernia. It took almost a year for the doctors to figure out that Shimon was suffering from a rare genetic disease (Debbie didn’t disclose details). With this diagnosis,Debbie was thrust into the world of special needs.

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