Finding Shelter

Anne Penniston Grunsted Special Needs

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My son Bobby was crying under the sound of country music playing in his room. Even though the volume on the radio was low, his weak cry was a stark contrast to the powerful voice of Loretta Lynn telling the story of a “Coal Miner’s Daughter.” Only two months old, my son was in congestive heart failure. He took seventy or eighty shallow breaths every minute, trying to clear his lungs of excess fluid. He needed surgery but the doctors hoped he could gain more weight first—the bigger he grew, the more likely it was he would survive the operation.

If Bobby ever writes a song about his beginnings, he might call it “The Son of Two Very Anxious Mothers.” My partner Valerie and I were caring for him at home—hospitals are full of viruses and bacteria and our little guy was vulnerable to even a minor illness. Per doctor’s orders, we kept him quiet as possible, no tummy time and no play. Every calorie was precious. In fact, we did not even ask him to use his energy to suck—we fed him through a tube that snaked down his nose into his stomach.

And we waited. We held him, obsessively scanning his face for the blue tinges that sometimes appeared over his lips and down the middle of his forehead. Sometimes we walked him around our condo looking for the brightest natural light, trying to decide if the darkness on his face was caused by shadow or lack of oxygen. We pulled up his onesie to observe his stomach; when his breathing was overly distressed his abdomen caved into his ribs with each exhale.

So when I heard his cries mixed with Loretta’s singing I hurried to his side, hoping to prevent a long crying jag that might compromise his breathing or cost him too many calories. After deciding that his complaint was neither hunger nor a wet diaper, I rocked him back to sleep, staring at the mural over his bed. Dr. Seuss’ Horton the Elephant was sitting on a rock, holding his talking flower. Above the picture big bright letters proclaimed “a person’s a person, no matter how small.’

I designed the mural after Bobby’s heart condition was identified in utero, after the doctors told us that his type of heart defect meant he almost surely had Down syndrome. It was my way of affirming the humanity of the unborn boy. I would listen for his voice among the cacophony of diagnoses.

After Bobby was born I realized that I had more in common with Horton than I thought. I felt like Valerie and I were all alone, stranded with our precious flower, unsure of how best to help our son but determined to protect him no matter what.

I wished my own parents were still alive. I desperately wanted someone else to be in charge or at least confident in our direction. They had both died when I was in my mid twenties, my dad of a sudden heart attack and my mother three years later after a battle with breast cancer. I remember feeling silly in the years after they died, thinking of myself as an orphan when I was a grown woman.

Being grown didn’t make me any less lonely. My siblings were all older and had spouses and children to go home with after the funerals. I went back to empty apartments. When my parents were alive, I considered Thanksgiving and Christmas trips to visit them to be “going home.” After they died, I relied on invitations to other people’s houses for holidays.

Slowly, I built my life without them. I came out as a lesbian, forming a new family with my partner Valerie. Our son Bobby was to be my hope for the future. The death of my parents had severed my link with the seceding generations; I would start a new living lineage with my son.

But with his heart defect, his future was far from secured. I did not feel up to the job of keeping him safe. What if his face turned blue and I missed it? What if he threw up so much formula he didn’t gain weight before surgery? If I did manage to keep him alive what business did I have raising a child with Down syndrome? The weight of his tiny life nearly crushed me. I wanted to be able to turn back and hand some of the heaviness to my own parents, but they were long gone.

So I started playing old country music in Bobby’s bedroom during the day. It was the music of my childhood. On summer Sunday evenings we used to pile into my dad’s car and take long rides on country roads, with George Jones, Conway Twitty, and Loretta Lynn playing through the speakers. The drawn out cadence of the singers’ voices matched the drawn out days we spent waiting for my son to slowly gain weight. Their songs evoked memories of a simpler time. At least a simpler time for me.

Growing up, my parent’s income was below the poverty level, a fact I did not realize until I was an adult. My father earned wages working at a factory, coming home with cuts on his hands and arms and bits of metal on his clothing. He handed his paycheck to my mother who ably budgeted our lives so we never worried about whether dinner would be on the table.  They carried that burden. I barely felt it. I am sure they kept me oblivious to many other challenges in those years.

Sitting in a darkened nursery, holding my son as we rocked back and forth, the country music brought me at least the memory of comfort from my parents and reminded me of a time when I was at least partially sheltered from the world.

I knew most of the lyrics by heart. Sitting in the rocking chair I sang along with the radio, hoping my son took some comfort in my voice. Maybe hoping he could feel a little of his grandpa and grandma in the music too. When Bobby fell asleep I sat quietly, determined to be a loyal Mama Horton to my flower at the same time I was wishing I was still somebody’s daughter.


About the Author

Anne Penniston Grunsted

Five years ago, Anne Penniston Grunsted was a data analyst living in Chicago. Today she is a writer based in Southern California. Her son and a midlife crisis inspired her to live the kinder, sunnier life. She writes about family. Follow her on Twitter at @AnneGrunsted or read more .

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