Yes, I know what it’s like to have a child with a delay

By Diana Kupershmit

“Why are you punishing my child?”

This was a question posed to me by a parent I sat across from at an Early Intervention meeting. Her son had been receiving twice weekly physical therapy through the program and part of my job entailed facilitating these annual meetings with families, to reassess their child’s progress and determine the direction of future services.

When I collected myself, I reminded the parent of my role and the purpose of the meeting. The truth was that her child had been receiving PT services for two years, from which he had benefited greatly. He was now, according to his therapist and mother, walking, running and jumping, and presented as age appropriate—on all levels—in his motor skills. The mother’s reaction was in response to my suggestion that, based on his progress, physical therapy once a week would now be sufficient moving forward.

But she was not having it. Her eyes brimmed with tears as she raised her voice at me once again. “Do you have any idea what it’s like to have a child with a delay?” She spit the venomous words in my direction.

Oh lady, I thought bitterly, you have no idea.

What I wanted to say but couldn’t, without the risk of losing my job, was that she was the one that had no idea what it was like to raise a child with delays, real delays, life altering, soul crushing delays. She could not have known of course, that my daughter, Emma, was born with a rare chromosomal abnormality that left her physically, intellectually and developmentally delayed and disabled. That at age twelve, she remained on a one-year-old level, non-ambulatory, non-verbal, G-tube fed and with a host of medical challenges.

That instead of being grateful that she had a healthy boy who perhaps didn’t walk at exactly 12 months on the dot, and qualified for free services from this generous government program, she was bullying me in the most personal and hurtful of ways, lashing out like a demanding, protective, feral…mother.

She could have been me. I could have been her.

Because the truth is, when we try to compare miseries, heartaches, injustices—there’s no comparison. Each person’s struggle, no matter how large or small, real or imagined, is the most devastating, the most debilitating, the most grave and insurmountable to that individual. The beholder of such perceived suffering cannot be argued or reasoned with. Theirs is as subjective as one’s religious beliefs or political leanings. It is worthy of battling for and defending, ferociously.

And this mother was preparing for war.

Then there were the other mothers. The ones of whom I could inquire with compassion and knowledge: “Is your son on Keppra or Trileptal for the seizures? Is your daughter on a continuous G-tube feeding at night as well?” They did not know my story, did not know that I had “insider information.” But we shared the road less traveled—a narrative—these mothers and me. Our eyes simultaneously glistened with sadness when talking about our children, their struggles, our fears. I felt a kinship with these women however brief, a shared mission; I also felt gratitude for being part of this community of Early Intervention and being able to give back. I was a veteran; they were only starting out on their journey. I wanted to reassure them that everything would be okay, but I wasn’t even sure of it for myself.

When Emma was six years old, my best friend gave birth to her first child. “Please come to the hospital,” she called to tell me, the doctors suspect Down syndrome.” “I need your opinion. I think she just looks like my father, has his eyes, you know?” she continued. The request unsettled me. What if the doctors were right? Would I have the heart, the gall to be honest with my friend?

When the moment came, and I saw the sweet little girl’s face, with all the tell-tale signs of Down syndrome, all I could say was, “She’s beautiful. She looks like your father.”

Life happens to everyone. It doesn’t discriminate.

But finally, I wasn’t alone.

Finally, I had someone—a close someone—who would genuinely understand my frustrations, despair, fear. We could lift each other up, compare stories, battle the same enemies and walk parallel lives. I was hopeful, buoyed by a sense of my enclosed little world expanding to make room for another.

But my friend was grieving.

She was standing in the exact spot I stood six years prior. She was in denial, in shock, wading through the same dark waters, grieving a loss. This friend was there for me. Now she was at ground zero, our positions shifted, and I had to be there for her.

Before long, my friend’s daughter began to take independent steps and string words together and I felt our worlds diverge. Emma was not doing any of those things and I suspected never would. I berated myself for comparing our two special children, for thinking that if I had been given a choice of disabilities, that I would choose Down syndrome, without hesitation. Because there was so much more knowledge about the syndrome, and nothing about ours, because Emma was so much more limited and so much more medically involved—just so much more.

And even so, even though there were so many things Emma did not have agency over, there were critical things she could do, that we took comfort in, like the way she smiled in acknowledgement each time we walked into a room and the way she folded in half, laughing her silent intelligent laugh when we said or did something funny; the way she blew kisses by putting her lips together and effecting a loud popping sound, and the way she reached for us and put our hands together, instructing us to clap for her. She gave back to us emotionally ten-fold and I was grateful for it.

Still on a deeper level, I realized I was invoking a ladder of suffering—of incomparable things. I wondered that if there was a choice offered, like in the anecdote told of people hanging their struggles out like laundry on a clothing line and getting permission to swap their worries for another’s—whether in the end, you always end up sticking with your own, because you’ve learned them, embraced them. Owned them. Love them.

Working in Early Intervention, sometimes I felt uncomfortable at being allowed a peak into other families’ most private experiences. This was the human condition at its most raw, most vulnerable, most human. But I also felt infinitely more thankful for the knowledge that ours was not such a singular life as I once thought. Because even with the occasional knots, together we could weave a stronger tapestry.

Yes, Emma was one of a kind, but so were all the other children: abled, disabled, differently-abled. In some circles, it seemed, we were not so abnormal. Our lives had similar patterns after all.

Diana Kupershmit holds a Masters in Social Work degree and works for the Dept. of Health and Mental Hygiene. She has just completed her memoir about life with her special needs daughter, Emma, who passed away unexpectedly four years ago. Emma continues to inspire her to tell her story. 

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