Life with Johanna

Today, Johanna -- nicknamed Jo Jo -- is 4 months old. She has reddish-blond hair and hazel eyes that crinkle up when she laughs. She loves to prop herself up on her arms and gaze at herself in a mirror, entranced by her reflection. When we feed her a bottle, her hands grasp our fingers, and she pauses every few moments to bestow on us a beaming smile that melts our hearts. Every morning, we bring her into bed with us to snuggle, and as we inhale the baby-wash scent of her skin and delight in the sensation of her slender arms around our necks, we can't imagine our life without her.

It's not easy all the time, though. We consider ourselves lucky that most of our family and friends have welcomed Johanna with open arms and treat her no differently than they would any other baby. But there are still the occasional comments from people that make me cringe -- like a note wishing us "lots of strength to confront those challenges and burdens ahead." I have to remind myself that these people are simply misguided, as Jamie and I once were. They don't have the perspective we now have that there are many more tragic things in life than raising a healthy child with developmental delays.

Johanna has saved us, in a way we didn't realize we needed to be saved. She rescued us from the über-competitive world of milestones and achievements that dominate the lives of so many people we know. I listen to other moms obsess about why their 4-month-old isn't sleeping through the night or why their 9-month-old isn't walking, and I thank God that's not us. We could have been, so easily, but Jo Jo has taught us to live in the moment. There are so many unknowns with her -- when she'll walk and talk, when she'll learn to read, and when, if ever, she'll live independently. For now, we're taking life day by day. And while my days are filled with coos and giggles, sometimes at night, after she's asleep, I find myself searching the Internet for information about Down syndrome. What I read fills me with dread: talk of increased risk of childhood leukemia, limited job opportunities, early cognitive decline, shortened life spans. It's at these moments that I race into Johanna's nursery and pick her up. As I feel her body, warm, plump, and soft against mine, I realize once again that she's not some statistic in a medical textbook. She's my baby, our Johanna.

Hallie Levine Sklar is a writer in Stamford, Connecticut.

Plus:

Photo Gallery -- A Special Joy: Beautiful Babies with Down Syndrome

Photo Gallery -- A Special Joy 2: More Beautiful Babies with Down Syndrome

POLL: If Sarah Palin were a father to special-needs infant son Trig and pregnant teenage daughter Bristol, what would you think about the VP nomination?

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