How funny ironic that today’s post was about Kairos and seeing God in the minutia of life. Because right now, I have to be brutally honest, the God I’m seeing has way too much trust in me.
If you’ve been reading for a while you know how much Luke has struggled with sleeping. He was a good 16 months before he slept any decent stretch of time and a good 17 months before we was sleeping without screaming for 2-3 hours a night. We had a few weeks here and there where it was lights out horrible, but his baseline was “follow the routine, get a good night’s sleep.” Then…we went to Amarillo for Christmas.
I don’t know if it was us sleeping in the same room with him the first night, a new place, a slightly “off” schedule, all the driving, iffy naps or what, but his sleeping totally bites now. I mean, big time. Just in the last few days we’ve been able to get him to take naps again and not fight us and scream out “NO NO NO!!!” everytime we enter his room. The nighttime is killer, though. Quite honestly, I think he’s sleeping decently during the day because he’s stinking it up at night.
Let me back up even further. If you know Luke’s history, you know that he’s missing a fair amount of his colon and small intestine (if not, go read “the preemie“). Possible TMI alert: In layman-speak that means that the part of the colon that squeezes out the excess liquid in your bowel is missing on Luke. His diapers are always nasty and they smell even nastier. I *think* it’s just the way he’s designed, but I’m not 100% proof positive. It could also be that the majority of his calories still come from a liquid source. No matter, this is our reality. Luke makes some humdinger diapers. When he gets teed off, he makes even ickier ones. And, when you’re missing the part of your colon that does that key component, that also means your hiney develops one heck of a rash because everything coming out is so acidic.
Let’s break all that down into simple terms.
– Missing colon makes for bad diapers.
– Being ticked off makes for even worse diapers.
– Bad diapers make for a bad hiney.
– They also make for zero sleep.
– Which means…ain’t nobody getting any sleep.
Luke can nap three hours in the afternoon, Scott and I can’t. Not to mention that the no sleeping at night means he’s not getting the rest he needs and it’s wearing on his weight gain, his immune system and our patience. We can’t leave him with a sitter, we can’t go out on a date, we certainly can’t leave him and go “away” overnight and we are so frustrated that we can’t figure out the answer. Oh, and did I mention he got so mad the other night he threw up? Yeah, we weren’t freaked out about that at all. Hi, flashbacks to June.
Damn you necrotizing enterocolitis. If I ever meet that punk in an alley it will be lights out. Guaranteed.
Some may say, “Oh, leave him with a sitter he will be fine.” Step aside while I punch out some people. If your child is throwing up, has a ridiculously high fever or is otherwise in a bad way, can YOU leave them and feel okay about that? Does your dinner out feel all carefree? Do you feel ok trusting them to someone else? I just can’t do it. I won’t do it.
I know we’ll figure this out. I strongly suspect that in a few weeks, or (whisper) months, he will get back to baseline. The cross is just heavy right now. Sleep deprivation makes you speak crazy talk.
God of wonders, please, please, please work your magic. A sweet little guy named Luke needs a break.