Baby Steps Forward and Backward

11“It’s like she takes three steps forward, then takes one step back,” Lynnette said to a friend who asked about Avery’s condition this evening. Avery’s doctor called us at 11:30 last night (Sunday) because she has having difficulty breathing and cooperating with the ventilator. The episode was over by the time we arrived at Kapiolani, but the short version is that she lost all of the progress she had made earlier in the day.

She’s improved today (Monday) and is right around the levels she hit yesterday afternoon. Basically, she lost a day of recovery. It’s an emotional roller coaster that feels as if it was designed for maximum terror; the highs aren’t very high but the lows are abysmal.

During the first week of Avery’s stay, Lynnette and I left for the hospital in time for the doctors’ rounds. If Lynnette’s parents were unavailable to watch Cole and/or Madison, they’d come with us. We’d leave, have lunch, then try to nap before heading back to Kapiolani in the afternoon. It feels like we’re changing that up for week 2. Lynnette heads to the hospital in the mornings to sit in on the doctors’ rounds while I stay home with Cole and Madison. Madison and I take care of things at home like the laundry and vacuuming, as well as other mundane housekeeping tasks. Lynnette returns in the late morning with an update on Avery. Lynnette and I try to nap before we head back into town in the afternoon to visit Avery. Madison is still a Never-Napper, so she’s pretty good about watching Cole in his play area.

Though these routines have formed quickly out of necessity, we still very much feel the void left by Avery. It’s the little things. I only carry Cole up and down the stairs in his car seat; I always carried them both at the same time. Cole rides alone in the double-stroller. On a few occasions, people have asked where the other occupant is. “She’s sick,” we say because it’s the straightest line. I make one bottle at a time. I feed one kid at a time.We go through formula slower. Washing the dishes is a noticeably shorter chore. The laundry seems light. There is only one cub rolling around in the play area of our living room. There is only one laughter, cry, voice. Everything is exactly the same, save one thing. It is the disorientation of staring curiously at a familiar skyline before realizing a large tree has been cut down and that only sky has taken its place.

Avery’s swelling is down a little every day. Her thighs and calves have a little give when prodded gently by finger. We can see her neck. Lynnette and I had a laugh tonight because it looks like Avery’s hair is somehow darker and thicker. This might just be a trick of light, or the fact that it’s all matted down, or the outcome of avoiding the bathtub, but still. She might just get her scalp covered after all. Lynnette and I take turns filling Avery in on happenings in our house. I tried to tell her about Pokemon Go but decided it would be best to wait to show her. Lynnette told her that Cole misses playing with her. I added that Cole probably does not miss Avery’s pinches, however. I told Avery that I miss her non-selling of my jokes, faces, and tickling. I can’t make the PITA Girl laugh, only Madison has been able to do it consistently. When I tickle Avery or play a game with her, the closest signs of amusement she gives is two hands raised to her ears followed by the pushing of air through her nostrils. “She’s going to be one of those girls that says ‘That’s funny’ instead of actually laughing,” I told Lynnette. “And it will destroy me,” I continued. “Really? Why?” Lynnette asked. “I consider myself a pretty funny guy. What does it mean when your own kid won’t even laugh at your stuff?” Lynnette was silent for a few beats, then she chuckled. “That’s funny,” she said. Total troll job.


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