Down syndrome is not a sickness

After our third daughter was born we were told she had Down syndrome.  Among other things, possible health threats bombarded our minds.

Polly had her heart tested, her eyes, her ears, her thyroid, her spine. At two months old, she was forced to drink a chalky liquid for x-rays of her digestive track.

Those first few weeks after her birth, I fought my imagination. I imagined her sick, plagued with heart disease, taking pills, and going to various specialists for checkups for the rest of her life.

It’s true. Children with Down syndrome are at a higher risk of heart defects, thyroid problems, hypotonia (low muscle tone), hearing loss … Unfortunately,  people with Down syndrome also have a higher risk of Leukemia but they generally do not get any other form of Cancer.

But at the time, in my fear and ignorance, I deemed Down syndrome itself a sickness.

We have a world-renowned hospital ten minutes down the street from where we live. My first time at the hospital when Polly was just two years old, I looked down at the ground a lot. I tiptoed, preoccupied with location. I found our floor, signed in and picked out a quiet spot to wait our turn. My stomach flipped and flopped as I smiled weakly at my daughter. I answered the receptionist in hushed tones, very serious, even though our appointment was in the ophthalmology department.

I never wanted to be in this position. The mom taking her child to a children’s hospital.

The second time we went to the hospital, just a week later, a woman held the door for us as we came out of the parking garage. I thanked her as I glimpsed at her child, bundled up in a stroller. The little girl’s eyes were the color of chocolate. She looked calm, and very sad. Then I noticed that her forehead was enlarged and raised.

The lower part of her face, from her nose down, looked typical, but the upper half was elongated and slightly puffed up.

Something inside me shifted when I met the gaze of that little girl, like someone had put a quarter in my slot and made a selection.

She was sick.

Really sick. Noticeably sick.

I became a cross between Vanna White and Santa Claus. I was a wind up toy, batting my eyes, commenting to the mother about her daughter’s beautiful eyes, what a big girl, how sweet.

The mother thanked me with a tired smile and started to move across the street. I, in my jukebox mode, shoved my stroller forward, and proceeded to talk and talk and talk until we got into the building. The mother said goodbye and I cheerfully bellowed out my sing-song farewell.

I wanted to identify with this woman.

I wanted her to know that I understood the concept of popped balloons … popped expectations of what life would be like with your newborn. I wanted her to know that I was OK with this turn in my life and that I was OK at the hospital.

Somehow I wanted her to know that I understood there was a difference between our daughters, although I wasn’t quite sure, that Down syndrome wasn’t a life threatening illness.

It surprised me to see the mother and daughter in the waiting room on the fourth floor. I smiled hugely and plunked myself down beside this little family who really, I think, wanted to be left alone.

But the mother was gracious. She made small talk as I asked her question after question about her little girl. I asked basic things like her name, her age, is she a good sleeper?  I flirted and schmoozed with the rest of the parents and the kids in the waiting room too. My new persona was annoying even to myself, but I couldn’t find the off button. I needed to just sit down and be quiet but instead I flung my goofy love to everyone.

By the time Polly’s name was called, my eyes burned and my mouth hurt from smiling.

We waited for the doctor in the exam room.

And I realized I had been pretending out of fear.

I played the part of a happy, accepting momma because I didn’t want people to see that I wasn’t completely happy. I still grieved the expectations I had for my third daughter, sure.

But more than that, I was frightened that the other shoe would drop, that Polly would develop a sickness that would once again, much like her diagnosis of Down syndrome but so much more serious, change our lives (which happened, by the way, a few years later).

I still was not used to this special needs skin. But if I showed that to others, maybe they wouldn’t see the new skin growth, thicker, stronger, in place of those expectations and fears.

And maybe the other mom, who probably didn’t think twice about me in retrospect, would know that I understood that I had a healthy child.

Maybe she would know that I knew that although it may be hard and new, that Down syndrome was not a sickness.

Having snapped out of my euphoric, annoying parent mode, I slumped in the car as I drove down to the exit of the dark parking garage after our appointment.  I cried.  Embarrassment burned into my skin.

I spotted my daughter in the rear view mirror. She was throwing the toys I gave her when I buckled her into her seat and cackling at the enjoyment of it. Her pony tail was falling out and she still had some vegetable beef baby food on her cheeks from lunch.

This journey takes time. There is no way around it on top of it, or under it.

You simply must go through it.