A Child of Difference

originally published in the New York times

AT 16 WEEKS into an uneventful third pregnancy, I insisted on a statistically unwarranted amniocentesis and got the result we all want: normal. The child was the daughter we hoped to conceive after two sons, and I fantasized about a long-legged creature in a ballet tutu, one more noisy kid scrambling onto the bus.

On a sunny June morning my daughter lay in her hospital bassinet, sucking in her sleep, dreaming whatever it is babies dream on their third day of life.

“We think she has achondroplasia, a form of dwarfism,” the doctor said without actually meeting my eye.

The word sounded sort of pleasant — mellifluous, non-threatening. But achondroplasia forever defined my daughter as different.

I read somewhere that even without conscious awareness, a mother will gently examine her baby as part of the bonding process. With my other children I had eagerly unfolded the blankets and inspected every inch. This time I was content to feed her and let her sleep. I chalked it up to the third child being less of a novelty, but I realize, in retrospect, that I must have had a mother’s instinct, some sense that she was different.

Even as I knew the diagnosis to be true, I clung to the hope that my doctor might be wrong. But the diagnosis was confirmed by X-rays, and the reality was newly shattering.

With one word my husband and I became unwitting members of a community whose bonds are not only the natural elations and tribulations of parenthood but also deeply confusing sorrow — a new understanding of random events, a skewed sense of reality. It never occurred to me, not even in my wildest disaster scenarios, that I would have a child different enough to illicit stares and change the way I think about a trip to the store or a walk on the beach.

My need for information and answers was compulsive. The geneticists gave me two pamphlets: a blue one simply called Achondroplasia and a yellow one entitled My Child Is a Dwarf.

The more I learned, the more my search for order and reason intensified. I called clinics, holistic doctors and the head of a group called Little People of America. None of the information satisfied. It was correct, but wasn’t what I wanted to hear. I wanted an elixir that produces long-limbed creatures, a magic cure, a fabulous new technique from an obscure doctor in India. The instinct to make my daughter mine existed in startling juxtaposition to my desire to put her back where she came from and start again.

Doctors reminded me that she was, after all, a baby pure and simple — in need of attention, diaper changes and love. Our baby girl was indeed a good feeder, a terrific sleeper. Her skin was unblemished and she was a rosy, contented bundle. Gradually I began to relax and realized that it’s impossible with any child to predict things like how tall, smart, pretty, well-liked or successful she will be.

Achondroplasia, a disorder that prevents the proper growth of cartilage, is the product of an accident, a spontaneous genetic mutation that produces a shortening of all long bones. So her arms and legs are short, her head is big and her torso average for a person her age. Intelligence is not affected: a huge relief.

One of about 250 syndromes causing short stature (women are an average of 4 feet 2 inches as adults), achondroplasia is the most common, though still rare at about 1 in 26,000 births. Eighty-five percent of children with achondroplasia are born, with no heredity involved, to parents of average height; the other 15 percent are the children of achondroplastics. As hard as it is to believe six-foot parents can have a child who will look 4 years old when she’s 12, here we are.

About six months prior to my daughter’s birth, doctors discovered the gene that causes achondroplasia. Achondroplasia and some other forms of dwarfism can now be detected in amniocentesis. But since those conditions are so rare and there are no heredity indicators, doctors don’t routinely test for them. For dwarfs themselves, however, it is a different story: an achondroplastic dwarf carries this dominant genetic anomaly, and if his or her mate is also a dwarf, the baby has a 1 in 4 chance of a double dose, which means the baby will die. Early detection in amniocentesis could screen out these fetuses.

The inevitable question is, Why us? There are no satisfactory answers to cosmic accidents. Then there are logistical questions: how do we refer to her condition? Well, she is, to be politically correct, a little person. I reject the word special. All my children are special; this one is just a different, more complicated kind of special.

My young boys, 5 and 7, remain oblivious to the implications and only vaguely aware of what it means that their pesky little sister is different. Their only real reference is Snow White and those cute little guys they think are called “dorfs.” My oldest chimes in now and then: “She’s so beautiful. Isn’t she?”

My husband began with the blindly optimistic desire, rooted in denial, to fix “the problem”: bone lengthening, gene therapy. It wasn’t until he accepted the little girl who is our daughter that he was able to simply let her be.

Integrating all of this was hard enough in the privacy of our home, surrounded by family and caring friends. The next hurdle was going out into the world. The first truly bizarre thing I have done since my daughter’s birth was to go right up to two little people I didn’t know from Adam, introduce my six-foot self as the mother of a dwarf and find myself saturated in awkward silence. The first was an Italian man in an airport whose main concern was a cheap hotel and a packet of filterless cigarettes. The second was a man I saw outside a local inn. This man said, “Right, well, is she healthy?” When I assured him she was and how much we loved her, he said, “Right, well, could you give me a lift to the chiropractor?” Which I did.

THE OBVIOUS LESSON here is that stature is a relatively superficial bond. We all suffer with our dilemmas and afflictions — some more obvious than others — and it’s pretty loopy to give someone a hitch down the road just because he’s little. I have stopped accosting strangers, whatever their height.

Now that she’s 2 years old, we are out and about in the world quite a bit. Anywhere but home is an excursion into a troubling, sometimes heartwarming land of possibilities. Early on I learned that the way other people react to a child of difference becomes integral to your experience of the world. I am happy to report that most people genuinely seem to want to say the right thing even if they aren’t articulate editors of their own responses.

We’re in the vegetable section of the supermarket. An acquaintance politely inquires after everyone. “Is LilyClaire really a dwarf?” her 7-year-old son asks with innocent incredulity. “Yes,” I answer. “That’s O.K.,” he says, undaunted. “It doesn’t matter how tall you are if your heart’s in the right place.” For the 100th time, with tears in my eyes, I wondered how all this happened. I was moved that these parents took the time to teach their son compassion and concern.

Then there was the friend who called, expressing his own opinion: it might be best for you and the community to put her up for adoption. It’s hard to describe the way this knocked the wind out of me. For months I couldn’t figure out how to respond. Having a baby is not, after all, shoe shopping. Even if we were to consider putting her up for adoption, it would surely be in the privacy of our own home and minds. I was angry — angry at friends who weren’t sympathetic enough, at my own distress over the whole situation.

Perhaps the most important thing about people’s reactions is that they take their cues from me: if I’m cheerful and positive, people are delighted to point out all of my daughter’s special qualities — bright eyes, charming smile. They are relieved to see she doesn’t have two heads, to see I’m neither fragile nor shattered.

At the beach last summer: I am standing with a woman. We are each bouncing a daughter on our hips, chatting. All the while there is loud debate in my brain: I think I see her staring at my daughter. She has twice asked me her age. I am hopeful she can’t tell there’s anything different. Then I realize that’s ridiculous, of course she sees. Suddenly out pops that old compulsion to tell all. She gets the edited version, the explanation that the terms dwarf and little person are interchangeable, while a midget is a proportionate small person and something different entirely. I explain the haphazard nature of it all, which makes me feel better. “Thank you, I knew it was something,” she says, relief in her eyes.

It’s like this: Under certain circumstances, not telling can be a withholding, even hostile act. Other times, telling puts an unnecessary burden on people, like pregnant mothers already apprehensive about their unborn. Mostly I go with a spontaneous sense of what’s going to make me feel most comfortable with the person at hand.

I can’t know how others feel when they come across a child of difference. I can only state the obvious and say that whatever you do, speak out of respect and from the heart. Of course, there is danger in this approach. Like the “friend” who suggested adoption, a person’s reaction to difference may reveal more about themselves than they want other people to know.



personal stories about being or living with someone or loving someone with chronic illness or defining difference

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