Most of the time, Ondine is so chill that everyone compliments me on how lucky I am. I protest that I’m just proactive in attending to her needs so she seems more chill. But the medical team seems to think so too so maybe I am that lucky. We are 50 days out from surgery and it feels like we’ve come a long way. But the journey is far from over.
Every week since she was 2 weeks old we have taken Ondine in for molding. Molding of her lip, now molding of her nose. Every week we adjust the device. Somedays she cries, somedays she sleeps right through. Today we added a piece of tape to press down the middle section of her lip just bellow the nose. She didn’t cry, she screamed.
Maybe she was hungry, maybe she was upset that it’s hot in Seattle and we don’t have AC. Maybe she was hurt by the device and couldn’t express it any other way. But she screamed. She screamed when she was on the exam table, she screamed in my arms, she screamed until she was exhausted and a cuddle on my chest seemed to dissipate it for a minute.
The doctors see her every week and comment on her progress. They’re great doctors. So kind and helpful. Anything I could need and they are there for me. But they aren’t the ones who have to put the tape on her cheeks. They aren’t the ones who take a wet cotton-swab to rub away adhesive so you can change the tapes on her device so she doesn’t accidentally swallow pieces. They aren’t the one who has to swaddle Ondine because she’s too strong and jerks so violently away from the tape that the threat of damaging her eyes is very real. I am. I am the mean person who tortures her and she looks at me with big wet eyes that ask one question: Why?
I’ve had to get creative to help expedite the process, otherwise I break down in tears myself and have to walk away for a moment.. I created a portable medical kit out of a diaper wipe container that goes wherever Ondine goes now. It’s more of a stock pile in case she rips tape off her face, which she does any time she’s angry.
I’m blessed that she has started to pacify herself with her fingers by sucking on her hand. The thumb-sucking doesn’t work because the device is in the way. She tried at the docs office today but it just wasn't the same. It took her until she had nearly cried herself to sleep plus a bottle plus a car ride before she actually settled down. Her brow was furrowed in sleep. She was anything but relaxed and I just sat there and cried. I cried like I cried when I went to visit my own mom.
My mom had taken the device out to let Ondine rest and I cried because it wasn’t fair. My mom got to see her smile. My mom got to see her at peace. And when I had her I had to be the adult and keep the device in, so she never really rested. I cried because I was jealous that I might never see her smile. Silly I suppose. But it was how I felt at the time.
Just a few days ago she started to smile for real. But this device ruins it every time. She smiles for a moment then remembers that she’s not that comfortable, that there is this tape pulling her checks towards her nose, that there is a piece of metal and plastic pushing her nostrils open and a final piece of tape pulling her lip down. Molding her face for the future. But today… I just want to see her smile.