It's been a long while since we talked. You might think that everything is going smashingly, I guess compared to last year at this time, we're fucking living at Disneyland.
Cyrus is healthy and incredibly charming. He can wave and blow kisses. He can kind of say words. He stands on his own, reaches his arms high above his head and waits for you to say "Sooo big." He likes to play with bouncy balls. He loves the cat, Remy, and when he's not pulling at his fur, he's looking at his face saying, "gung-gung." He loves his moms. I look forward to the day we have conversations, but for now, I accept his open mouth kisses and teeny baby hugs.
He's nineteen months, but should be 16 months. He's behind, for sure, but he's doing it. And he will do it. One day he took two wobbly steps. I snatched him off his feet, pulled him to my kisses, and cried. At one time, you'll remember, we didn't know, you know...
If you're not close to us in a geographical sense, you might be totally alarmed to know he still eats nothing with his mouth. That's right; all of his calories come from a feeding tube and a hole in his stomach. Now, here you go, saying things like, "Well, you should feel soooooo lucky that that is all that he has wrong with him." And you know, we are very, very lucky. But that doesn't mean it's alright that we feed our child with a tube.
The doctors seem to think so, though. They don't give a fuck. In the 16 months that Cyrus has been home, we've asked doctor after doctor why our son won't eat. They mumble something, send us to someone else, and we never hear from them again. There have been a few tests a few answers, but it all turned out to be bullshit.
Once our awesome pediatrician left, we had to find another. He seemed nice enough, even told us he had a tube fed son. We sat in his office and said, "No one will listen to us," and he gave the impression of listening. We said we wanted to find the real answer to why Cyrus gags and retches and won't eat. He sent us to St. Louis to a feeding clinic. We took our Speech Pathologist, the only person in the world who seems to care this is happening, and the results were just as I suspected: nothing. They basically said, well, we are a speech pathologist and an OT and you guys have all that at home. I cussed.
Parenthood is isolating, frustrating, and exhausting. The small moments of joy are overshadowed by doctors who won't listen and others who don't understand. We are still tired, as I imagine most parents are, but we were exhausted before we even began. We take turns getting up around 2:30 every night to give the little man his quit-retching drug. Since he started daycare in August, he's been sick a lot. And when Cyrus is sick, he coughs. When he coughs he gags on his own mucous. Then he retches. And screams. Screaming makes him cough... We never seem to sleep.
Even if it's not my night, I wake up. When it is my night, I give the drug and then lie awake for an hour, sometimes two. Just as I slip back to sleep, he coughs or cries or makes some noise to wake me, and the process starts again. I don't know why I try to sleep anymore. I fantasize, as I toss and grunt in bed, that I could get up and start writing. That the middle of the night should be my writing time. I imagine that I'm some machine. That sleep is a stupid excuse that lazy people need to justify not doing anything. But I don't have the strength to get up. So I stare off into the nothingness on the verge of tears. They never come.
Just the other night Mindy woke me up saying she was going to call the doctor. He had a fever of 104.1. While we sat up, looking to see if the tylenol would help, I suggested we turn on the t.v. The over head light was low and we watched some documentary about Pompeii. It was about 2:00 a.m., so my body was used to being awake. It was nice. It was time we spent together. In that hour, I was convinced yet again, that I could live without sleep. That I could stay awake all night catching up on all the films I've neglected to watch, reading all the books I don't make time for in the daylight, writing and revising all of this fucking blog. All of everything I've ever written.
I've heard it too many times: "Having a baby is hard work, but I wouldn't trade him/her for the world." Well, of course you wouldn't, that would make you a horrible parent and human being. But you're all lying. You'd trade money for some time alone, for some time out with your friends, for some time out with your loved one. You'd trade lots of shit if someone watched him while you took a vacation. Somewhere with a beach, even though you hate sand. Somewhere that looked nothing like work, home, or a doctor's office. You'd trade him, not forever, but for a while, for some sleep. Some sanity.