Join The Conversation With Mishpacha's Weekly Newsletter



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.

To read the rest of this story, please buy this issue of Mishpacha or sign up for a weekly subscription

Share this page with a friend. Fill in the information below, and we'll email your friend a link to this page on your behalf.

Your name
Your email address
You friend's name
Your friend's email address
Please type the characters you see in the image into the box provided.
CAPTCHA
Message


 
Top-Down Theory
Shoshana Friedman Our true currency, the accomplishments we value most
Strive for What Binds Us
Yonoson Rosenblum The chareidi community represents something of an oasis
Embracing Victimhood
Eytan Kobre Combating the allure of victimhood
The Kids Are Going to Camp, the Parents Are Going Broke
Miriam Klein Adelman Mindy has to feel good; it doesn’t matter that I feel ba...
Work/Life Solutions with Carlos Wigle
Moe Mernick “Rejection is Hashem’s protection” 
How to Create a Simple 900-Page Novel
Rabbi Emanuel Feldman All of us can reset the titles of our own lives
Stand There or Do Something
Baruch S. Fertel, MD, MPA, FACEP It’s called collaborative care, and it works miracles
I'm Here — Are You Ready?
Riki Goldstein Upbeat and catchy, but still makes listeners think
Back in Time
Riki Goldstein "I wish I could recapture that excitement"
Mixed Messages
Riki Goldstein The unsung craftsmen who give albums their special touch
Go in Peace
Faigy Peritzman Inner peace makes us vessels for blessing
All Work and No Play
Sarah Chana Radcliffe A life only about doing your duties loses all its color
Dying to Believe
With Rav Moshe Wolfson, written by Baila Vorhand Emunah peshutah is the force behind Jewish continuity