People ask from time to time how Violet is doing with her cyclic vomiting syndrome, and it means so much to know that she is in people’s thoughts. I don’t generally mention every single time she’s sick, because in the passed it’s been so frequently off and on that I know it would seem repetitive. She was sick today. She wasn’t sick today. She was sick today. She wasn’t sick today. Starts feeling like the days when people would post pictures of their lattes on Instagram. Oh look she had a coffee today. Oh look she didn’t.
Well one thing that I’m not sure I mentioned is that she went the entire summer without a single full blown episode. FOUR whole months. That’s definitely a new best (previous best being 40 something days in early 2016).
The spring was so awful, which made this long summer stretch that much more appreciated. It was nice to have one less thing to worry about in the midst of moving, busy summer schedules, and the disorder of a kitchen and bathroom that are barely usable. I got used to her being healthy. I stopped waking in the night with a certainty that I had heard her vomit in her sleep. I stopped repetitively texting the babysitter “she seemed a little off this morning, hows she doing now?” The feeling of dread on the subway every evening as I wondered if I would get home to find her sick or not, slowly slipped away.
I’ll admit, every time we have one of these long stretches, I get a faint little hope in the back of my mind that she has outgrown it. I mostly push that idea out, I can’t let myself go there. She could outgrow it. But mentally, for me anyway, it’s better to assume it could always come back.
Because so far, it has always come back. We’re into day 9 of her current episode.
9 days is pretty long for her. 4 days is her usual episode length. We’ve taken her in twice for IVs to hopefully prevent a hospital admission. Our insurance no longer allows us to go to our usual hospital, and it’s been odd going to a new one. All the doctors and nurses at the old hospital knew Violet and our family. They even knew our babysitter. At the new hospital they are still giving me the side eye and sending in the social worker to ask questions that give me the feeling they are trying to rule out munchausen by proxy. (“Um ma’m would you be willing to take a small sip of the alleged gatorade you are attempting to feed the child?” What are you, the TSA, yes I will take a sip.)
That is an old picture, but we had a similar situation yesterday. The hospital thought they just needed to bring her the right liquid to get her to drink, even though I had told them she refused to drink anything. Water, Gatorade, pedialyte, and popsicles. She’s like “Nice try but nope.” That missing popsicle bite was me in an unrequited attempt to prove how delicious it was. When she refused all those things the doctor was like “I know! Let’s try the ORANGE popsicle.” Nope.
In spite of how terrible she feels, she has been insisting on wearing her fanciest dresses. She woke me up at 3AM a few nights ago “Mommy, I threw up in my bed. And tomorrow I want my zebra dress.” Mariyah commented this morning “maybe she doesn’t feel good, so she wants to look good.” That seems like a complex thought for a two year old, but you never know. She’s currently at the babysitter’s house in something with flowers and tulle.
It’s hard to look at my baby and see her in this kind of pain. That’s the worst part of it all. The way she wiggles around and cries. When my big kids are hurt, I can give them a hug or a kiss and all is right with the world. When James was little he used to tell me my kisses were magical. “When you kiss my owie, it’s gone!” he exclaimed. But not for Violet. I’ll never get used to that sad look in her eyes and my inability to make it better.