Penny stands at the stove making omelettes

Down Syndrome and a Lack of Ego

When Heather Avis and I talked about being at Hope Heals Camp last summer, she mentioned that what made it so distinctive was the lack of ego present. 

Heather’s words made me think about our daughter Penny, who was diagnosed with Down syndrome sixteen years ago. Penny has plenty of flaws. She can be mean and rude and selfish. But she doesn’t have much of an ego. 

Ego is what tells us to compare ourselves to others, to make sure we look better or sound better or achieve more than others. Ego is the part of us that guards vulnerability, the part of us that needs to become invincible and important. Ego is the part of us desperately hoping no one will notice how fragile and uncertain we are. 

Penny takes pride in what she does well, but she doesn’t need to be better than everyone else around her. She laughs freely, at herself and with other people. She forgives readily, both herself and others. That lack of ego opens her up to disappointment and pain and celebration and delight. 

As far as I can tell the ego props up the false self, the self-protective actions and behaviors that prove our worth to others. The true self is the beloved self, the part of us that is vulnerable and gifted and seeks to make connection and contribution out of that belovedness rather than out of a need to achieve. Penny doesn’t have a highly developed false self. Her true self shines through. It makes her vulnerable. And it also welcomes anyone who gets to know her into a place of authenticity and love. 

Perhaps that’s the invitation for all of us during this Down Syndrome Awareness Month. To recognize that the distinctive qualities of receptivity and welcome so many of us experience in relationship with someone with Down syndrome are actually present within us all, if only we can let go of proving ourselves and receive our belovedness. 

(And if you want some practical ideas on how to receive belovedness, look here.)

5 ways to experience God's love and practice peace book cover

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  1. Lynda

    Embarking on the incredible journey of raising children with Down Syndrome is a unique and rewarding adventure, filled with love, joy, and discovery. In this blog post, we unveil a treasure trove of invaluable life hacks that not only simplify the daily challenges but also amplify the extraordinary moments of parenting. Join us as we navigate the terrain of raising remarkable kids with Down Syndrome, offering insights, practical tips, and heartwarming stories that will inspire and empower every parent on this extraordinary path. Let’s celebrate the exceptional journey of parenthood together, unlocking a world of possibilities and embracing the beauty that comes with raising these incredible individuals.

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