Home » 31 for 21 » 31 for 21: Day 4: smile

31 for 21: Day 4: smile

“She has yours you know.”

I looked over at the stranger who was grinning down at the Quail sitting in my shopping cart.

“Excuse me?”

“Your smile. She looks so much like you.”

I smiled back at the woman wondering if she fully understood the gift she had just given me.

Only hours after the Quail was born the on-call pediatrician was standing over the end of my bed unwrapping the Quail from the pink and blue foot-printed hospital blanket her father had just burritoed her into less than an hour ago. He had been in already to check her toes, her heart, her nasal bone and palms. Looking for a clear sign that she either did or didn’t have Down syndrome. Only a few weeks earlier we had visited the Maternal Fetal Medicine OB/GYN and he had explained that since they were performing the ultrasound so late in the pregnancy they had really not been able to see all the soft markers that would indicate Down syndrome. “She may have it or she may just be a genetic match for your older daughter.” In my first full-term pregnancy I had been to see Dr. G as well. I have a couple of blood clotting disorders, I’d had a couple of miscarriages and I wasn’t exactly a spring chicken by obstetrics standards. During those visits Zuzu had exhibited what I now realize were soft markers for Down syndrome. Only back then, those words hadn’t been uttered. It’s why each month, when the OB would suggest I could go back to Dr. G at any time and I could have any genetic testing I felt like; I smiled and declined. Zuzu had shown hydronephrosis and shortened femurs and other than one urinary tract infection, had been none the worse off. In fact, she measured in the 75th% for height. Shortened femurs be damned. As I’d seen each OB in the practice I used in turn, I’d smiled and turned them down on their offers for additional checking; until Dr. B, by far the most direct in the practice and the one who had delivered Zuzu, said outright that they thought there was a good chance the new baby had Down syndrome and I should really go get a level 2 ultrasound done at least. So I could be prepared. With his frankness, dimming my smile, I had nodded and headed over to see Dr. G. Again. My only clue something was amiss was his question of where my partner was when I stepped in his office to go over the ultrasound results. I had assured him I was fine. As we talked I joked that he should see Zuzu’s height. He nodded, shuffling the papers, remarking that it was less likely as the baby was a girl and assured me that after she was born the pediatrician would take a close look to see if further testing should be done. I agreed better safe than sorry and headed back to my car. Stiff lipped and quiet until Lovey’s voice came on the line and I started to tell him what they had said and the dam finally broke.IMG_1887

“I’m 75% sure she doesn’t have it but we’re going to draw blood and send it in for analysis.” The on-call pediatrician called in his colleague for a second opinion and between the two of them they really weren’t sure.

“Do her eyes look like anyone in your family?” Lovey and I shook our heads resignedly. Not really. It was too soon to know by color. But her newbornness, was definitely unique to herself and not that genetic match of Zuzu we were expecting.

Three weeks passed before the call would come and our own pediatrician would give us the final call on her genetic make up. He assured us in an involved and loving home like ours, most of what she would experience as somewhat limiting, could be medically managed nowadays. As he ran down a list of what to keep an eye out for, I sank down on the bed. The smile that had lit up my face as I snuggled the Quail close to me and breathed in her baby head just minutes before, once again faded from my lips. Earlier that day I had made a round of angry phone calls to the geneticist, the hospital, the pediatrician. Tired of wondering. But at that one moment, as time stopped and our doctor explained how an Early Intervention expert would be calling us for more information in the coming week, my place in the world had shifted and I wished I hadn’t been so damn ready to know. I longed to not be so damn sure. I was the recipient now. No longer the public servant. I had a daughter with Down syndrome. A daughter whose eyes didn’t look like mine. A daughter who hadn’t shown me her smile yet. A smile that would mold into my own in the months and years to come, but not right then. Over the next few days I continued to snap pictures but eyed them all speculatively before sharing them. Did she look like what I thought of when I heard Down syndrome? Sometimes. Sometimes I could see just the baby, my baby and sometimes I saw the otherness. I hid those pictures. I wanted other people to see her, and me still. Not the otherness. I cried when I flipped through those pictures. Then the time came to make our birth announcement. We needed a photo. I wasn’t comfortable with a single one I had taken so far. Lovey cleared off our mattress in the magic hour of afternoon light and laid out our sheepskin that had been a gift when Zuzu was born. Her jaundiced skin contrasted it as she slept on, oblivious to our arranging of her limbs. He snapped a few shots, moved her a bit more, angled himself level with our bed and backed up as I looked solemnly on over his shoulder not smiling or laughing. Not confident at all in how we would do this….

The next day as I sat at the computer editing the shots from the afternoon, I smiled seeing that the magic hour had done its job. Her sweet rounded cheeks gave way to her button nose which looked a lot like her sisters and my baby pictures. Her feathery locks of hair folded over her soft forehead. Her small pinky curled up by her ear. And there was my baby again. The one that had snuggled iin to me before the call verifying her otherness. Lovey had given me a great gift. A view of the Quail that I had known was there but still faltered over finding as my maternal hormones had their last bit of way with me.

IMG_2055e

“I know. She’s all me. And a little bit more. Thank you.”

Smiling warmly at the woman, I turned back and grinned down at the Quail as she giggled and mirrored my smiling face back. Together we turned the cart and went back outside.

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‎#IDSC2015‬ ‪#‎DSAwareness‬ ‪#‎31for21‬ ‪#‎dsam15‬ ‪#‎downsyndrome‬ #ordinaryafters

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