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Starting with Akiva

As a Down syndrome diagnosis emerged, they proudly blessed their baby with names that mean tenacity and strength
Gabe, Akiva and Natan a few hours after birth.
Gabe, Akiva and Natan a few hours after birth.

We stand there, looking down at my newborn boy, number three. He’s splayed out like Jesus on the cross, and there’s something about his position that just seems familiar — the open body, the slackly positioned arms and legs. I wonder why he’s not scrunched up the way newborns typically are.

Later that day as I hold him, nuzzling his sweet, fuzzy wobbly head, I have a frisson of awareness as I look at the nape of his neck, a fleeting thought of recognition that flits away quickly. I blame new mother hormones.

The lactation specialist, who will shepherd me through the next six weeks of trial and error until Akiva becomes a full nursling, studies him, and us, as she holds him gently, with easy expertise.

We taxi to the pediatrician’s office on day two for our home birth follow up appointment. I don’t remember having the big boys in tow. They must have been with my sister Jessica, who’d come in from Israel for the birth.

Ira and I are jittery. We’re not sure why.

I have a checkered past with this pediatrician — he’s a NY queen of a certain age with a predilection for drama. He shepherds us in and examines our bundle. We chat in a desultory way.

He closes the door and asks, “You think any of your ancestors were raped by Mongols?”

And the spell is broken. It’s a relief to laugh at his completely inappropriate line, an only-in-New-York, Jewish humor moment, as he pulls out a reference book and talks us through the probability that Akiva has Down syndrome.

Ira, Gabe, Akiva, Natan and me, 2010, the year of Akiva's Bar Mitzvah.
Ira, Gabe, Akiva, Natan and me, 2010, the year of Akiva’s Bar Mitzvah.

He books us an appointment with the neurologist the next day. We pile into his ancient Datsun and drive home. He lives around the block from us. He is kindness personified.

I’ve never seen him again.

Stunned but grateful, we emerge into the tree-lined street, the sultry heat of a summer evening pressing on us as we blink like newborns holding this yet-unnamed baby.

Five days later, we name him Akiva Yehoshua. I wince during the brit milah, finding it especially hard to inflict pain on his infant body. He’s healthy but smaller than my usual. He just seems a little young for all of this.

I feel a little young for all of this.

Akiva for Rabbi Akiva. Who knows if he really sat, a 40-year-old man among the youngest children, willing to do anything to learn how to read, but we’re drawn to his story of self-possession and personal determination. Yehoshua, for another biblical strong-man who led his people into the Promised Land.

We stand and hold him proudly in the synagogue sanctuary, our other Brooklyn home, surrounded by friends and family.

Today he is 19. Happy birthday Akiva.

About the Author
Beth Steinberg is the Executive Director and co-founder of Shutaf, Inclusion Programs for Children with Special Needs in Jerusalem. A believer in Jewish camping, Beth is a graduate of Massad and Ramah camps, where she learned the importance of informal education programs as a platform for teaching Jewish and social values. As a parent of a child with special needs, she struggled to find workable, appropriate activities for her child. Beth believes that a well-run inclusion program can help educate and change values, creating meaningful and lasting social change. Beth is also the Artistic Director of Theater in the Rough, engaging audiences with free summer Shakespeare.
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