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Life Work

When I was pregnant with my first child, I thought I knew how my working life would change. I had a vision.

My husband, Brian, and I had picked out names, put the crib together, decorated the room and attended the baby shower.

At the time I worked out of my house selling computer hardware and software nationally to corporations in our then-hometown, Redondo Beach, Calif. I had an established and loyal client base that started my phone ringing with demands at 6 a.m. West Coast time. 

I loved the hectic pace of sales. The highs and lows. The anticipation and then exhilaration when you closed a deal. It was a job that could be done anywhere as long as you had the motivation. And the beauty was, when the day was done, I could head to the beach.  

It seemed so simple. I planned to have the baby, take a few weeks off, then head back to my office down the hall in my PJs and slippers. Baby would sleep quietly by my side.

The only part that actually took place was I had the baby.

At birth, Amanda was diagnosed with Down syndrome and multiple heart defects. She needed surgery, therapy services and early intervention, just to start.

As soon as I was able, I began carting my five-pound baby all over town for X-rays, ultrasounds, echocardiograms, blood work, assessments and physicals.

The next two years were spent in and out of intensive care. She required open heart surgery, two airway repairs, a fundoplication (a surgical procedure to wrap the upper part of the stomach around the lower part of the esophagus) to fix reflux, and a tracheostomy (creation of a hole in the trachea to insert a tube) to assist in breathing.

Much, much later, we went home from the hospital with a medically fragile soon-to-be 2-year-old.

Miraculously, I still had the option to work. My employer contacted me a few months after we had settled at home with an offer. They needed someone to monitor and train existing salespeople. I could do this remotely from my house via a special phone hookup.

I had always worked. I felt pride in my ability to be successful in the career I had chosen. I had been a saleswoman longer than I had been a mom. I liked making money. This opportunity would keep me connected with that world.

But reality set in. My toddler needed more than the typical amount of time from a parent. She received speech, occupational and physical therapy multiple times a week. She was being followed by numerous specialists for her various health issues. If her tracheostomy tube was accidentally dislodged it was a life-or-death situation.

On top of the daily routine, we had nighttime to deal with. Amanda was hooked up to an apnea monitor and a mist compressor while she slept because of her tracheostomy. Between monitor false alarms and the loud gurgling of mist compressor tubes, the household’s sleep was often interrupted. We darn near killed ourselves numerous times racing down the hall to make sure she was still breathing or hadn’t drowned from the tube water.

Manage all this and function successfully at a job? Even if I felt comfortable putting my non-verbal child on a bus in a car seat, or dropped her off at an all-day program, I was constantly exhausted and cranky.

We were lucky in a few ways. We were able to live on my husband’s salary. We lived in an area where there were many options for Mommy and Me activities. There were numerous programs that welcomed children with special needs and included them with their typical peers.

There was the beach. The park. Disneyland. Legoland. Knott’s Berry Farm. Sunshine almost every day of the year so we could be outdoors.

These factors were important when considering staying at home.

Still, I struggled with accepting the change in identity. I had seen the look of disinterest when a woman was asked, “What do you do?” and she replied, “I am a stay-at-home mom.” I feared my ability to have adult conversations about timely topics would be replaced by talk of potty training, nap time and baby’s first words.

I could have claimed handling Amanda’s medical issues by myself was too overwhelming. We were approved through our insurance for in-home nursing. There were programs that took medically fragile children and provided the therapy services on site. I could have returned to work full time.

Brian made it clear he would support me whichever option I chose.

What I realized is during all those days, hours, and minutes since Amanda’s birth, I had been making my decision. While sitting cribside in the hospital, next to her in her high chair, rolling with her on the floor, my heart had made the choice. The offer from my employer made me say it out loud. I would be a full-time mom.

Amanda was giving me the chance to be great at something. I had been pretty good at many things in my life: I was a pretty good student. I was a pretty good athlete. I was a pretty good salesperson.

But here was my daughter. She needed someone who was more than pretty good. She needed someone to give everything they had into being her mom. Hadn’t I made that promise to her when I decided to have a baby? I realized I couldn’t do that and succeed at a full-time career.

I can say now I made the decision with not nearly enough information. I had no idea how physically and mentally draining staying home with your child can be. I know I have made many mistakes. I know I have been by no definition perfect.

I also know I have been rewarded in ways more important than money and prestige. I have been paid in hugs, smiles, tears and giggles. I was lucky. It turned out what was best for my family and my child was also best for me.

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.

Photo above:© Fabiana Ponzi | Dreamstime.com

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