How Our Daughter with Down Syndrome Exceeds Our Expectations
"It may take time, but she'll get there."
I'll always remember that morning in the kitchen when my daughter, Johanna, was 20 months old. We had been trying to get her to walk for weeks and weeks, but she would only take one or two tentative steps before crumpling like a rag doll to the ground. Her physical therapist, Isabel, was across the room, encouraging her by shaking a box of graham crackers. Johanna stood with her back against the cabinets and glanced over at me nervously, her big hazel eyes owl-like behind her red glasses.
"Go for it, Jo Jo," I said wearily. I'd been up most of the night nursing her 3-month-old brother, Teddy. It was only eight o'clock, and I was already counting the hours until naptime.
Johanna hesitated for a moment, and then, with her arms thrust forward, she took six Frankenstein-like steps. I stood stunned, staring at the back of my daughter's blond ponytail. Then I knelt down to hug her.
"Yay!" she said, clapping her hands. I pulled away and looked at her -- her wide, upward-slanting, almond-shaped eyes, her button nose, her small rosebud mouth that hung slightly open. Her cheeks were wet, which I realized after a moment was from my crying. "I love you, Princess Johanna," I said.
"You know she'll do everything typical kids do," Isabel said softly. "Kids with Down syndrome -- they hit all the same milestones as everyone else. It may take time, but she'll get there."
I had learned over the previous 20 months never to underestimate my daughter. But it had taken me a while to get to this place. Johanna's diagnosis, delivered an hour after her birth, had seemed overwhelming. Infants with Down syndrome are more likely to have health complications, and Johanna had been born with an intestinal blockage that required immediate surgery. Once she was home two weeks later, our days were filled with doctor's appointments and therapy sessions (she was automatically eligible for the state-run Early Intervention program). My husband, Jamie, and I had just moved from New York City to a Connecticut suburb where we didn't know anyone, which added to my sense of isolation. I liked the mothers I met whose children had Down syndrome, but it was hard to relate to them. Most had refused prenatal testing or had learned early on in pregnancy that they were carrying a baby with Down syndrome and were at peace with the diagnosis. But if we had known, we most likely would have terminated -- a fact that haunted me every time I looked at Johanna.
I loved my daughter, the way she cooed contentedly in my arms, and the reddish-blond fuzz on the top of her head. But what really scared me was the unknown. Every book I read or website I visited seemed filled with terrifying information about raising a child with Down syndrome. I lay awake at night imagining Johanna suffering infantile seizures, or going into respiratory distress, or developing leukemia.
When Johanna was 5 months old, I met Joe, a 12-year-old with Down syndrome. Our pediatrician had given me his mother's phone number, and when she invited us over I was terrified. But Joe turned out to be a soft-spoken sixth-grader in a button-down shirt and khaki shorts who was on the lacrosse team and played the drums. While his older brother stayed outside to play basketball, Joe came inside with his younger sister to see Johanna. I was struck by the gentle way he played with her, how he stroked her hands and sang to her. I'd never seen a boy his age display such tenderness to another child, and when I mentioned this to his mom, she shrugged. "That's just Joe's nature."
When I left their house, I felt hopeful for the first time since Johanna's birth. I knew two things: This was a disability that my husband and I could live with, and I wanted us to have at least two more children. I had seen Joe with his brother and sister, how they laughed as they played Frisbee and scuffled over the TV remote. There was no question in my mind that having siblings had helped foster Joe's development. Three months later, I was pregnant.
New Baby, New Challenges
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.
Two Precious Peas in a Pod
Johanna is now 2-1/2 and Teddy is 15 months. When we go out, they hold hands in their double stroller and we're often asked if they are twins. They both have their father's smile -- a wide grin that crinkles their eyes -- as well as my pout. They have large ears (a gift from my family) and a gap between their first and second toes, which, doctors point out on my daughter, as a clinical feature of Down syndrome, even though my husband has it as well. When he cries, she brings him things to console him: her Elmo puppet, her favorite Dr. Seuss book. There are plenty of tussles, usually over toys or vegetable puffs, or my attention, but there are many moments of quiet coexistence when Teddy shows Johanna something that fascinates him and she pats him fondly on the head.
Every evening, after bathtime and bedtime stories, I place Teddy into his crib. "Night night, Teddy," Johanna says, pressing her face against the side . She slides her fingers through the slats and he chortles in delight. I wish I could keep them in this bubble of innocence, a world without divisive labels such as "typical" child or "special needs," where it doesn't matter that my daughter has an extra chromosome in every cell in her body. I long to postpone that time when Teddy will become aware of his sister's differences and struggle with twinges of resentment or shame. But right now, it's just the two of them, holding onto each other and smiling. Looking at them, I don't see a child with a disability and a child without one. I just see my two precious children, Teddy and Johanna.
Originally published in the November 2010 issue of Parents magazine.