Sleep deprivation is just pure unadulterated torture. Of course, people really use it for torture. People that aren’t even babies.
E. has been up at night again and again and then sometimes she throws up. We have to have her sleep upright in a sling which has her looking like she is some sort of mountaineer—because of the reflux she has to get velcroed in against a steep wedge in her crib, with her feeding tube sticking out. It seems terribly uncomfortable, but puking is certainly worse. The apparatus is supposed to help relieve her poor sweet gut.
Before bed, when she first came home from the hospital, A. took one look at the set up and was like, ‘What is this?” And then he started yelling about how he wanted to take her tube out. He laid himself down on the hard wood of her bedroom floor—like the four year old conscientious objector that he can be (about lots of things, like anything nap related or the foods that he is “allergic” to which mostly include green vegetables) and he wouldn’t move. He insisted on sleeping in her room, right next to her. And I get it, because last Sunday the child went to sleep and everything was fine. Then the next morning he woke up, and his sister was already admitted to the hospital for another week.
I wouldn’t want her to go to sleep alone either. I don’t want her to go to sleep alone now. I would do anything for that girl.
Should we all just be sleeping in the same room to watch over each other? Because we are up most of the night anyway, and then at least we could get more snuggling done.
We had a nice Father’s Day on Sunday, against pretty much all odds. It was mostly unplanned and the day unfolded in the best ways. Our general family tradition for these types of holidays is that we have a good mid-day meal and most importantly, whoever is being celebrated gets some time to themselves. And that person can choose to do the kid stuff that they actually like to do and almost nothing that they absolutely don’t want to do (i.e. no diarrhea duty, which is fairly hard to escape right now). But I have to say that Cedar was up not once but two times in the night and got puked on at five AM. I sauntered downstairs after sleeping in a little and said to Cedar, “Happy Father’s Day.” So basically, he’s amazing. I organized some things throughout the day and beforehand, like a 1;1 yoga session for him a few weeks ago, which hopefully absolved me a little.
I want to be real with you. And if I’m being real, then I need to include this: E.’s medical problems have been hard on our marriage. And also have given us this inescapable bond which brings closer together. I think it’s actually both, all at the same time. But it’s no honeymoon phase right now, that’s for sure.
A lot of the time it feels like we are coworkers in an enterprise called keeping our children alive and thriving and the house reasonably clean and oh yes, deal with the meals and the dishes and the lunch packing (ones of my least favorite tasks) and of course, of course, the medical appointments.
Sometimes I am hard on Cedar because he doesn’t match my relentless productivity. Because lot of times, it’s work work work, which is the opposite of romantic. So we argue over who does what and when because we are both overwhelmed and there’s not enough time in the day. And not enough rest for our souls or bodies.
I get tired of feeling responsible for so much, because taking care of E. is more than a full time job. As a skilled nurse, but without the training. A lot of this falls on me. When I get overwhelmed I’m truly not very much fun at all. Mostly, I’m focused on checking off the tasks from our ever-growing to-do list. And sometimes, when Cedar is overwhelmed, he turns into a professional avoider, and avoids helping me with the housework and all of the other tasks that need doing. Like scheduling/forms/laundry/cleaning/and what is going on in our refrigerator?
Luckily, he does not avoid our children. It would be hard to avoid our children, since they certainly aren’t shy about their needs. But I know that many, many people do.
There are moments when we are really enjoying things, like other other night when after dinner we put on Van Morrison and we all danced in the kitchen. Even E. joined in from her high chair, with some subtle dance moves. Dancing in the kitchen is one of the best measures of happiness that I know.
And there are many moments, like basically anytime when it is just the two of us away from our to-do list or a medical intervention, where we really, truly, enjoy the hell out of each other. Because I genuinely like Cedar, and I love being around him. He’s funny and kind and amazingly empathetic. Among many other things. But this family gig, this non-stop child-rearing life moment we are in? This thing where E. is relentlessly needing us? Not sexy, and really it’s about 20 to 25 percent fun and about 80 percent drudgery. And maybe the 20-25 percent is a high estimate, at least for today. Which, when I put it that way, sounds pretty rough.
My hope, by the end of the summer, is to hit 50/50. 50 percent enjoyable (or even semi-enjoyable) moments and 50 percent drudgery. Is that realistic?
Today we are again on the edge of E. being hospitalized—she just can’t keep anything down— and today A. is home sick from camp with a fever.
It could be worse. It could be a lot worse, and I am always working to stay mindful of that, of all of the good things we have going for us. Our people, our family, our love. And, the real truth is that I’m tired. Also, it’s scary. Because she is not getting better. So, I am currently accepting words of encouragement from any and all people.
Thank you in advance, I couldn’t do it without you.