How Our Daughter with Down Syndrome Exceeds Our Expectations

New Baby, New Challenges

Joanna and Teddy playing the drums

Amy Postle

The first time I saw my son was at his 12-week ultrasound, and he was a mass of wiggling arms and legs. "This one's a mover," the doctor said as he inserted a long needle through my abdomen for the chorionic villus sampling (CVS), a procedure in which cells are extracted and analyzed for chromosomal abnormalities. (At age 34, I hadn't had genetic testing when I was pregnant with Johanna.) The week before, I'd panicked when the genetics counselor told me that because of my previous history, my chance of having another baby with Down syndrome was one in 88 -- more than four times higher than for an average woman my age. I had known the recurrence rate was high, but not that high. Although I didn't think we could handle having another baby with special needs, my husband often pointed out that we hadn't wanted a child like Johanna, either -- and now we wouldn't be able to live without her. But watching Teddy swim on the screen in front of me, I was calm. A week later, I got a phone message with good news.

During my pregnancy, other mothers of children with Down syndrome told me that watching a second, typical child pass through infancy would seem nothing short of miraculous. Indeed, I've been blown away by Teddy's development, and how all the things we worked so hard on with Johanna -- transferring objects from hand to hand, sitting up, crawling -- now unwind before us naturally. However, when Teddy smiled at me at 6 weeks, I was elated but I also cried. It had taken Johanna almost twice as long to do that. I know it's likely that within a year or so, he'll have caught up with her developmentally and then will surpass her. We spaced our children closely together so they could be companions and so Johanna could have a sibling whose behavior she could model. But I have moments when I wonder if that was fair to Teddy. Will he spend his life feeling responsible for his sister's well-being and resent us for it?

A few months ago, when we were on a family vacation, Teddy ate a piece of his cousin's peanut -butter toast before anyone could stop him. Within an hour, his eyes and tongue were swollen, and his face and chest were covered with hives. I remained calm as I phoned the pediatrician's office and the nurse told me to call 911, and when the paramedics came and escorted Teddy and me into the ambulance, and even as they clumsily tried to insert an IV of Benadryl into my son's tiny veins. But when the doors slammed shut, I had a vivid flashback to when I had sat in another ambulance with Johanna, then only 2 days old, en route to the hospital in New York City where she would have surgery. She lay in an incubator covered with monitors and wires, and I was filled with a deep, primal terror that left me feeling unable to breathe. This time, however, as I cradled Teddy in my arms an hour later and the E.R. doctor told me that he appeared to have an allergy to peanuts and could go into anaphylactic shock and die the next time he was exposed to them, my mind drifted to my happy little pigtailed daughter -- and I realized that when it comes to my children, nothing is insurmountable. We would regroup and once again adjust to a new normal, scouring food labels for potential allergens and carting around an EpiPen.

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