When My Disabled Child Lights Up: Parents Speak

How awareness of struggle need not eclipse the joy. Which is real. Always.
When My Disabled Child Lights Up: Parents Speak
When I like my disabled son more - Shadows and Lights no. 88, 2004
Archival content: this article was published more than 20 years ago. The language and content reflect the sensitivities of the time.

Daniele

I'm Stefano, Daniele's father. He's a sweet boy who doesn't speak. We understand him through what we call empathy—a daily knowledge built on small signals and habits.

He tells us so much. When he looks at us and squints hard while smiling as we speak gently and with love. When he pats our shoulders or ruffles our hair or stares at us or hugs us when we least expect it, always passing along courage and calm. Those are the moments we love most.

This and so much else is Daniele. He never stops amazing us with his sweetness and tenderness, even toward his younger brothers.

Stefano Manfucci, 2004

Vincenzo

I wept in silence so many times, bitter at God for what my son had to bear.
Now that he's 32, I see the differences, the struggles—what a great gift they've been. I've had a messenger of the living God beside me all these years.
From an earthly view, yes, it could have led to despair. The differences in Vincenzo, the hardships—they were so plain to see.

The looks of others. Their pity. Their praise for the work I was doing. None of it helped my fragile state of mind.

I could never do enough—I mean everything I could think of—to make Vincenzo's life livable, not for my own sake but so he might have some measure of independence.
I should admit: the plan didn't work. But I haven't given up.
What I gained was Vincenzo's sensitivity. It repaid every sacrifice I made.

Vincenzo saw my despair and took responsibility for it. When he saw me angry (for any reason), he'd apologize: "Dad, don't be mad". In those few words I always read his need to blame himself for my moods. I understood and always tried to talk him out of it.

So Vincenzo changed tactics. He started speaking only positive things, even asking me: "Am I good, Dad?"
That's when I knew: if I had even a tenth of his sensitivity, I'd have been a hundred times happier.
Now that he's shown me, I can finally live. I have an angel watching over me: VINCENZO
Egidio

Silvia

When Silvia was a teenager, I used to think about my future. In the dreams of youth there's always the prince charming, the wedding, children. Now in my third age, I sometimes look back to take stock. I was blessed to find my prince charming. I was blessed to have children. But Silvia, my second, carries a physical and psychological disability.

Trying (I'm not sure I succeeded) not to rob the others of anything, Silvia took all my strength and my husband's. She was a source of worry, but also of satisfaction and joy. After many struggles—struggles so many parents like us know—we found others with the same journey in our Fede e Luce group. Together we created a group home where Silvia lives with her companions, serene and happy in what she can do. Workshops. Baking. Therapy. And what she loves most: vacations.

Her little face, so often marked by tension and rebellion, is now more at ease. She smiles easily. In her eyes I read a need for protection, but also joy and a hunger to live. What touches us most is Saturday, when she comes home. Happy, she hugs us. In that embrace, my husband and I read her happiness at being back where she belongs, back with the love that gives her strength to say: "I'm here too! Here I am!" After 36 years of fighting, this gives us peace. We've found the path for Silvia we thought we'd never reach.
Gemma Magnanelli

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