West of Wickenden

A Ray of Hope

Finding the bright side – and some perspective – in challenging times

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I looked around the tiny restaurant, with its roaring fireplace and twinkling white lights setting the stage for romance and relaxation. Each table for two was set with white cloth napkins and red tapered candles, which were glowing with enthusiasm. It was Friday night and all around me, couples were huddled in intimate conversations.

My date sat on my lap, legs spread wide, his arms slung around my neck as he stared me in the eye. Nobody can love you more fiercely than a three-year-old boy.

Before I had children, I was that person who said things like “I would never bring a small child to a nice restaurant.” But then I gave birth and I realized that you do what you have to do to get by.

Had I any inkling at all that I’d end up in a fancy bistro that night, I would have at least thrown on a little makeup – or worn anything other than a ratty T-shirt and running sneakers. But when I set out from home that morning, my destination was a hotel in Hoboken, New Jersey. I was expecting to have time to relax and shower. It wasn’t supposed to end like this.

My daughter Penelope is one year old. She’s been hospitalized three times over the past six months, and was diagnosed with reactive airway disease. She can wake up in the morning with a runny nose and end up on oxygen by dinner.

She was eight months old the first time we rushed her to the emergency room. ER staff sent her by ambulance to Boston Children’s Hospital, where she was admitted to the ICU. Four days later, she finally came home.

Penelope had been healthy for several months when we took a weekend trip to New Jersey. We had passed a sign that read “Welcome to the Bronx” when we heard telltale wheezing from the backseat. As soon as we entered the Garden State, we drove straight to the ER.

Everything that could have gone wrong did. Before long, Penelope was screaming hysterically and I was crying my eyes out and saying some pretty mean things to the hospital staff.

“Take Sebastian and go get dinner,” my husband told me. “I’ll take it from here.”

I took my son’s tiny hand in mine, and led him into the cool nighttime air. We walked a block and ducked into the first restaurant I spotted. And that’s how I ended up at a candlelit table for two, drinking a gin and tonic while my smiling three-year-old sat on my lap and caressed my face: “I like you, mommy. You’re cute and sweet and awesome!”

That perfect moment was a ray of sunshine amidst a dark and rainy storm.

A few weeks later, we were back in our local emergency room – Penny was being admitted once more. Inside I was raging: Why does this keep happening? I can’t take more time off work! We can’t afford any more hospital bills! Why me? Why her?
Why us?

During this hospital stay Penelope had a roommate – a delicate thing with a horrible, persistent cough. It was the type of sound you can never unhear. Our nurse assured me that the little girl wasn’t contagious. And by the way, she was nonverbal. Truly, there was nothing to worry about.

Over the next two days I witnessed what it was like to have a chronically ill child. I couldn’t help but sneak quick peeks at the beautiful young mother, a beacon of calm and strength, curled up against her suffering daughter in a narrow hospital bed. Home away from home.

Finally I had perspective. In a few years, Penelope’s disease would be nothing more than a distant childhood memory. Not every family is as lucky.

Every day that my kids can sling their arms around my neck and call me mama is a good day. I vow to never forget how fortunate we are, even when the storm is raging.