About Tomorrow, and the Day After


E.’s been throwing up a few times a day again and we are not exactly sure why. Our best guess is that it’s because we started putting a few milliliters of water into her stomach tube to see what she can tolerate. If this is the reason for the vomiting, we are really in trouble.

It’s not like the adult type of throwing up where you get it out and then it’s done. It’s a wretching, sputtering and then nearly choking thing. It’s terrifying.

Watching E. struggle feels like ice cubes between my toes. Except substitute heart for toes. Or something like that. I know this sounds self-sacrificing, and not in a good way, but I wish that all of this was happening to me and not her.

I guess a healthier way to think about it is that I wish it wasn’t happening at all, to anyone.

She never used to throw up, before she had the second surgery in May. I just don’t get it. Why was she basically puke-free for the first 11 months of her life and then now she can’t hold down half an ounce of water? I wish we had answers, not just more questions. If things continue as they are, she’ll need another major abdominal surgery.

Cedar and I are feeling pretty burned out with the intensity of caregiving. A.’s been perfecting the art of being four years old, which involves melting down regularly, running around the room, and speaking at top volume no matter what the occasion. He also, thankfully, can be hilarious, kind and uncontrollably charming. A few nights ago, we stayed up late talking. It was almost 9:30 at night but there was a grand finale of fireworks going on outside so I wasn’t even trying to get him to go to sleep. A. turned serious, stating that he had a surprise for me. He then whispered in my ear, “Tomorrow is your birthday. I’m going to go with daddy to get you flowers.” And followed this declaration with a big kiss on my cheek.

The point is not that there were no flowers the next day or that it was very much not my birthday when I woke up. I wasn’t counting on either of these events to actually happen. I know that A. is not the most reliable narrator, nor should he be. The point is that right now, I would like to be surrounded by any and all types of wishful thinking. That works for me. I don’t even care what happens, let’s all pretend that something lovely will take place tomorrow, because why not?

Yes, E. is going to be better soon. Life is going to get easier for her. We won’t see a post-op recovery room again for years and years. Maybe we won’t even see a hospital for a long time, unless someone we love has a baby. And also, I’m going to have time every day for writing and for a bath and maybe I’ll spend a quiet hour this afternoon cooking dinner. In addition, world peace.

Great plan, A. I’m on board with the whole concept.

I do have some great news about E. that is rooted in reality. She made it back on the charts for weight. Which means that she no longer has a Failure to Thrive diagnosis.

Also, her pediatrician thinks she’s developing nicely. The doc told me yesterday (at her 15 month well child exam) that she believes that E. will be able to walk up the stairs in our house someday. And also, she thinks that she looks good cognitively.

And did I mention that E. has been (mostly) sleeping through the night?

Things are up and down. We get some of these hopeful doctors visits and then we get the ones that project all kinds of long-term problems. We have the kind of sleep that we have been lusting after for months, and then we have what happened last night when I forgot to unclip one of the ports to E.’s gastric relief bag. A 3AM wake up call from her, throwing up like crazy. Actually, technically, I woke up to Cedar flashing the lights on in our room, announcing that he needed my help.

What does anyone know about the future anyway? We can’t predict what’s ahead for E. or anyone else. Not the doctors, not the rest of us. The big thing is—the unrelenting challenge, is to stay in the moment. Not to be swayed by the easy, ever-accessible fears about what might happen someday.

I’m not saying I’m good at this. I’m working towards A.’s way.

Maybe tomorrow there will be flowers.

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