"I feel much better knowing you're in there with her"

 Jo Jo got tubes placed in her ears this morning. We had to be at the hospital at 6:30 am. I got up at 5:30 and quickly got her dressed, carrying her sleepy and warm out to the car. We registered quickly and were ushered into the surgical center. Jo Jo happily settled in a chair to watch Sesame Street while I paced the room, restless. The center smelled of harsh antiseptic hospital soap, and it brought back memories of her birth, of her first surgery and subsequent time in the NICU. I remembered standing in a harshly lit hospital corridor, holding onto Jamie’s hand and crying as I watched my daughter, only five days old, disappear down the hallway and into an operating room.  This time, I would be allowed to go in with her, although I’d been warned watching her go under would be pretty traumatic. “They really kick and scream when the anesthesia mask goes over their face, and then all of a sudden they just go limp and their eyes roll to the back of their head—it’s pretty gruesome,” another mom had told me a few days earlier.

I was thinking about all of this when the operating nurse walked in. “Why hello there pretty girl,” she said cheerfully to my daughter. Jo Jo grinned and stuck her tongue out at her. “Tongue in,” she said, tapping my daughter on the arm. Jo Jo ignored her. "Tongue in,” she said, more sternly, and nudged her under the chin. Jo Jo looked startled, but obediently stuck her tongue back into her mouth. I looked at the nurse, wondering how she knew how to do that, but before I could ask her she had started grilling me about Johanna’s health history.  

“Wow, you’re lucky,” she said when she had finished. “No major health issues.”

It seems like every nurse or physician I ever meet who sees my daughter says that to me. “I know,” I said, and shrugged.

The nurse leaned over to stroke Jo Jo’s hair.  “My son has Down Syndrome,” she said matter of factly, and we spent the next several minutes talking about him. He was nine, and had had every health issue imaginable for a kid with Down Syndrome, including heart surgery, seizures, and even leukemia. But he was doing well now—he was mainstreamed in a regular classroom, and had just learned how to read. “I’m not going to lie to you,” she said as she stood up to leave. “It can be very hard, and it's a lot of work. But he’s an amazing boy and I am so lucky to have him.”

It wasn’t until she left that I realized I hadn’t asked his name.

Another nurse came to get us a few minutes later, and we walked down the hallway, Johanna holding my hand, ambling along in her blue surgical gown and socks. As soon as we got into the OR, Johanna stopped in her tracks, stared at the surgical table, and burst into tears.

A nurse was suddenly next to me. “Mom,” she said, “can you put her on the table?” I tried, but the other nurses had to literally pry her off of me. They wrapped her in a canvas blanket, holding her arms and legs together as they placed the anesthesia mask over her head. “No!” she was screaming. “No no no!” A few seconds later the shrieks were replaced by soft mews, and the nurse with the son with Down Syndrome tapped me on the shoulder. “She’s going down,” she said. “It’s time for you to go.” She walked me out. “Are you okay?” she asked. “I know it must be hard to watch, especially with you being pregnant.” “No,” I said. “It was fine.” And then I said what I had been thinking the whole time I was in the OR: “I feel much better knowing you’re in there with her.”

She nodded in understanding. “Good,” she said, and turned around to return to the OR. “Just go back down the hallway and through the doors into the main waiting room,” she called back over her shoulder. “We’ll come get you as soon as the surgery’s done.”

A few minutes later, Jamie arrived, and about 45 minutes later her ENT doctor came out to tell us she was waking up. Both ears had been filled with fluid, and since her ear canals were so small it had taken a little longer to drain her ear drums and put the tubes in, but the procedure was done and she was fine. “I think you’re going to see some pretty dramatic differences with her speech,” he said. “She was really clogged up. I’m surprised she could hear anything.”

He was right. I went down to the cafeteria to get a cup of coffee and when I came back up Jamie was already with her in the recovery room. She was clinging to him and crying. “Jo Jo,” I said as I walked in, and at the sound of my voice she instantly turned. She crashed as soon as we got home, but when she woke up from her nap I walked into her room to find her sitting up in bed smiling. “Do you want a snack?” I asked her and was stunned when she said “Jo Jo snack” and proceeded to tell me she wanted to eat macaroni and cheese, applesauce, cookies and peaches—more spontaneous words than I’d heard in months. I brought her downstairs and as I was getting her food ready I heard the sound of Ivry’s collar tinkling as she walked down the stairs. Johanna’s head snapped up. “Ivry,” she said in wonder, looking at me, and as the two of us stared at each other I realized how severely her hearing had been compromised.

The words kept spilling out of her all through the afternoon and into the early evening, until she got cranky and tired and had to be tucked into bed at 7 pm. Tonight, all I could think about was this past winter, and how moody and withdrawn she was, and how much I worried about the fact that she seemed shut up in her own little world, barely responding to us, her family. Now, I realize it must have been due to the fact that everything she heard was muffled, like being under water.

I’m grateful that my daughter seems to be back, and angry at myself for not figuring out what was going on earlier. But I guess that’s just one of the challenges of parenting a child with Down Syndrome, or any kid, really, for that matter. You fly by the seat of your pants, learning as you go along. And sometimes, when you're lucky, you'll have someone there to guide you--like that nurse in the OR this morning--on your journey.