Articles


Not-So-Special Needs


I learned big lessons from a small person. Four pounds, 10 ounces to be exact.

Amanda presented herself to the world on July 29, 1997. She was our first child. She was in the breech position and decided to arrive three weeks early.

We opted for a cesarean section. It turned out to be a good decision because the umbilical cord was wrapped around her neck, twice. Even with this rocky start, Amanda appeared calm. She seemed to marvel at her new surroundings.

The first thing I noticed was her nose. I am Italian. No one in my family has a small nose, yet there was this tiny, pink, turned-up nose attached to the baby they had just pulled out of my uterus. She was sending me a clue.

Brian went to the nursery with Amanda and the head of neonatology while my doctor put me back together. I was waiting in the recovery area when Brian pulled the curtain back and stepped inside.

“They think she has Down syndrome.”

I was sure I had not heard him correctly. The head of neonatology appeared in the room. He sat a noticeable distance from us. He repeated Brian’s words: “I suspect your child has Down syndrome.” Then he said, “There are many people who adopt children like these.” I did not hear another thing he said.

I needed to see Amanda. I needed to hold the baby from 10 minutes ago. How could my idea of our future change with two words, “Down syndrome”?

Kindly, the hospital gave me a private room. Brian and I stared at the door, waiting. Thoughts banged through my head. What are the things Amanda might never do? Would she walk? Would she talk? Would she go to school? Would she be happy?

I was given a book that showed children with Down syndrome and their families. The pictures were adorable. The text was scary. It listed all the medical issues people with Down syndrome can have. It gave life expectancy. It frightened me to death.

A nurse wheeled Amanda in. She was wrapped like a burrito and wore a striped pink-and-blue hat. All you could see was her little face. Peaches-and-cream complexion. Reddish eyelashes and eyebrows. Cute little turned-up nose. Tiny rose-petal mouth. She looked perfect to me. The doctors must be wrong, I thought.

The lactation specialist arrived. She proceeded to explain that babies with Down syndrome have difficulty breast feeding. They have a “weak suck,” making it hard to latch on. We would “give it a try” but might need to go to the bottle.

I had failed at giving birth to a “healthy baby,” and now I was being told I would probably fail at breastfeeding. I wondered if we were already heading down the path of “things Amanda can’t do.” Confidence was not oozing through me as I began my first attempt.

Amanda and I looked at each other—me with nervousness, Amanda with expectation, or maybe hunger. I put Amanda in position and pushed my breast up and out as far as I could. To the surprise of everyone in the room but Amanda, she latched on and began to nurse.

The next few hours, specialists came and went. She would need heart surgery, we were told. She might have intestinal anomalies. She would need blood tests. We would have to speak to a geneticist. Every time a doctor entered my room he or she brought news I didn’t want to hear.

I insisted Amanda stay in the room with me, instead of being shuffled off to the nursery. Watching her sleep quieted my brain. She looked like every other baby, except prettier. She slept like every other baby. Life would be OK. 

Every time they wheeled Amanda away for another test, they brought her back all clean and bundled up in her blanket, and I managed to go many hours without having to change a diaper.

But then my time came. I was all fumble fingers as I unwrapped a bright-red screaming Amanda from her blanket. Her arms and legs were flailing about as I attempted to unstick the adhesive on the diaper. She was so tiny the nurse had rolled the diaper’s edges down not once but twice, to avoid irritating the umbilical cord stump, and making diaper removal even more challenging. Amanda was a scabby, angry, noisy octopus.

And then I saw it. Black tar. My baby had black tar in her diaper. I was horrified. The phrase “intestinal anomalies” sprang to mind.

My first thought was to scrape it all off, put a clean diaper on her and wrap her back up. No one would know, and I wouldn’t tell. I looked around for wipes. I didn’t want to leave her on the bed. I was having a not-very-nice conversation with God in my head when a nurse appeared.

“Oh, meconium,” she said. “Let me get you some more wipes.”

This is normal? Why hadn’t anyone told me about this, for Pete’s sake? Amanda was just like other babies. They all poop black tar.

Amanda established her routine, the routine that all mothers learn: eat, sleep, poop. Amanda did these things, and often. Keeping her fed, clean and comfortable kept me in the present. I had no energy to look beyond the now.

The world was going to make decisions regarding Amanda, based on their experience or perception. They would decide who she was by the way she looked, or her diagnosis. Amanda was teaching me to ignore those voices. Pay no attention to the questions in my head. Place no limits on expectations. And, of course, love her with all my heart.                

Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs and publishes the blog www.momofmanyneeds.com.

 





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