this post powered by caffeine.

His under-eye circles are easy to hide in photos, in real-life he looks like he’s been on a 4-day bender

Last night I went to bed at 4:40 am.  The night before, 5am.  Both times my rest lasted less than 2 hours.  I am awake 20 hours a day. Seven days a week. Weekends mean nothing to me.

I have long ago let the guilt of daytime naps keep me from going back to bed, fearing what people would think of me for being sound asleep through lunchtime.   That late-morning nap might get me another 1-2 hours more rest for my day’s quota. That is the last time I see the inside of my eyelids until 4 or 5 am the next day.

Corrigan is racking up a few more hours of slumber than I, he goes to bed at 8pm but only sleeps until 1-1:30am. There is no amount of persuasion, comfort bottles, threats or pleading that will coerce him to close his eyes again until he is good and ready and that is now just before sunrise. He falls out again around the time that fictional vampires hit the coffins and don’t even think for a second that he “should really sleep after being up all night!” because you couldn’t be more wrong. He just needs a power nap.

I sleep from 4 or 5am until 7am (Maybe. -Often Corrigan will wake when Connor gets up for school at 6:40am)  Corrigan and I then go back to bed around 11am and sleep until 1.  That is it for me.  We have to squeeze therapy in between those sleeping times.  Twice he has fallen asleep right beside the therapist, middle of the session.

Sometimes, in the darkest hours of the night,  I am so irrationally angry that he is wide-awake that I have to leave the room, bend over and take some deep breaths.  It feels like torture. Corrigan is 2 1/2 years old this weekend. That is 30 months of misery.

Everyone tells me that I should just got to bed when Corrigan does (at night) but I cannot.  I am unable to run his night feed until a few hours after he goes to bed because I put him down for the night with a bottle. I know that it is a terrible habit, that nighttime bottle, but it is one of only two times a day he will drink anything by mouth now.  The therapists want us to do whatever it takes to encourage any mouth success because all of those skills (desires?) are disappearing.

The pump runs for about two hours during his night feed. Sometimes more if he has failed to eat even the teeny amount of protein(from solids) that we leave for him just in case he decides that today is the day he would like to chew something.   At night, I cannot run the pump as fast as I can in the day because he does not do well with volume while laying down Neither can I turn the pump on and go to bed because this pump, just like the one we exchanged it for, often thinks that the dose is finished when, in fact, it barely even started.

Twice I have fallen asleep, nearly against my will, and woke by Corrigan’s cry to find that the stupid pump has errored out again and then we are now so behind I want to cry. If that happens that means I have to put his pump in his little backpack, at 1 or 2 am in the morning and let’s just say that Corrigan doesn’t love wearing that backpack. He dislikes it in a loud way. I have to work harder to distract him than any other time in the day when he is wearing the backpack.

Last night I let him play in the empty bathtub ( he loves the tub, empty or full) for an hour, while hooked up to his pump/pack, and I sat on the bathroom floor to make sure he didn’t sneak out and splash in the toilet. The alternative was 60 minutes of crying.

Aside from pump issues, Corrigan is a very active sleeper. He often even sits up in his sleep and sways side-to-side, eyes closed tightly.  After a few minutes he just flops over dangerously whichever way gravity pulls him and I sometimes find the tubing twisted around his upper body or that he managed to kick the tubes apart with his foot and formula is soaking into the mattress.

So now I just stay awake and creep into his room every twenty minutes, flashlight in hand, to make sure that all is well.  Mark and Connor go to bed around 10pm and that is when I am able to work on photos or blog, eat fatty comfort foods at my desk and long for the comfort of my bed.  By the time Corrigan’s feed is finished, I have certainly had enough of the day but to my great dismay this is around the time that Corrigan’s body has had enough rest and his day begins.

The past two nights he has woke even before his feed was finished, once I opened his door to find him standing at the doorknob, testing the tensile strength of his feeding tube and pulling his Mic-Key button out so far that I gasped. It must be 10 feet from bed to door. I have no idea how we have not had to replace that button yet.

I have tried so many things to encourage Corrigan to sleep well.  We have an evening routine. We try not to dump him with too much of his allotted protein before bed, we have tried melatonin (under doctor supervision) and found it absolutely ineffective and we have a theory that it might have contributed to his sudden loss of appetite that has caused us to have to completely redo his entire day’s diet (under metabolic dietitian’s supervision) and lead to him having to be pumped, by tube, every three hours from 7am until the end of his night.

He has to be fed as often, and sleeps as little, as a newborn baby.

Friends advise us to just let Corrigan cry it out , or just let him play in his room ( in the dark) but, because he shares a room with his older brother who needs his rest to tackle his tough classes in 8th grade, I cannot .  There are nights, when Connor is away at a friend’s house, that I am able to try shutting Corrigan in the room and trying to ignore the noise (or put in ear plugs) but he just plays in the pitch black room for hours, splattering the night with whining and temper tantrums, and bangs on (and yells through) his door.  We rent a two-apartment home.  On the other side of our bedroom wall we have wonderful neighbors that do not deserve to be woke six times a night by a ticked-off toddler.

When I bring him out here, to the living room, I have tried keeping the room completely dark, even going so far as  taping over the little power lights on the electronics in the room, to encourage sleep but he still runs around dangerously, banging into furniture or throwing loud tantrums that might wake his brother or Daddy.

I recently purchased dim night-lights so that he could have some light but nothing to encourage him to ramp up to daytime energy levels and I feel better about his safety.  I cannot go to sleep on the couch while he plays because he thinks that I should be a zombie like he is, so he slaps at me when I close my eyes, or makes that annoying whining sound that makes my level of patience bottom out in 2.3 seconds.

So we are up. Well, I have been up but now we are night-owls, watching Backyardigan’s, blowing bubbles and thwarting 3am temper tantrums because he wants to go outside and play. If I try to stay awake by surfing around online while he watches a movie, he will come over every five minutes and yank on my arm. Or dig his little fingernails into my hand to try and get me to engage him.  I love him and want to engage him, but not at 3am. Is that bad?

I whole-heartedly think that Corrigan has a sleep disorder.  His geneticist does not believe that it is related to the UCD and has offered us very little help other than the previously mentioned melatonin trial.

I try not to get angry, I really do.  It isn’t his fault. I compare it to me getting 14 hours of sleep and then waking to find someone standing over me, at gunpoint, ordering me to go back to sleep. It is not as if Corrigan is sleepy but unable to rest. He simply sleeps really well for 5 hours and then is awake.    I do not know if he gets 10 hours worth of sleep in those 5 little hours or if the lack of sleep is about to catch up with him but I do know that we were in the hospital on Halloween, Corrigan was a little boy that was on the verge of the most popular celebrity illness in US Weekly…exhaustion…and his eyes are only getter redder and the circles underneath are only getting darker.

Nothing is getting done around here.  My motivation to do regular household chores is nil.  I am (easily) three loads of laundry behind and my bathroom, oh dear let’s not speak of the bathroom.  The dinners I cook are lazy.   I cry a lot.  I have heated conversations in my head throughout the day because I am so full of anger and I have no idea why.  I figure I will hash out all of those frustrated feelings in my mind so that none of it comes out in my interaction with Corrigan all day.

But it is hard.  He hits. It isn’t getting better. We have tried all of the suggested diversions to get him to stop slapping at me all day but his frustration level at not being able to talk, but understanding that he needs to communicate, is manifesting itself in Corrigan being rough when he wants my attention. He slaps at me instead of saying, “Mama” no matter how many thousands of times we say, “We don’t hit. Say, Mama please” (or teach him the sign, which he knows but he will not use regularly) and the incessant whining all day long, hardly ever being able to figure out what has him so aggravated.

In the past few days, when I tell him that he is not to hit me, he has begun to hit himself in the face with both palms of his hands.  His frustration makes me want to cry.  I cannot imagine not being able to properly convey my needs to another human being.  There is something in Corrigan’s brain that is preventing him from talking. His therapists agree that it feels like we are able to watch the gears in his brain working when he wants to say something.  He stops and moves his mouth, he knows what he wants to say and he cannot. I’d slap myself too.

It has been really hard. The lack of sleep makes it all seem worse, I suppose.  I am incredibly thankful that in the middle of everything else that is going on right now, both in regards to Corrigan and otherwise, he has not been hyperammonemic.  He is metabolically stable and that is more than I could ask for and as tired as I am I wouldn’t trade that stability for anything else in the world but folks, I am pretty much a ghost.

But not the scary kind. I could never be a scary ghost.

Mindy

3 thoughts on “this post powered by caffeine.

  1. Oh Mindy – I don’t know how you are managing. Is there any family around that could come and help you one day a week to let you get a day to sleep? Would insurance pay for a night nurse once per week?

    And NO it is not bad to want to play with him at a decent hour instead of 3am. You are running on empty. I know when my family says that I must take care of myself, I kind of laugh because what am I supposed to do with L while I go and take care of myself. I’m sure it’s the same with you. I wish I lived closer and could come give you a couple hours rest especially since I know how to do the pump and meds and whatnot.

    Or maybe a family member or friend could come and do the things that you don’t have time to do – like a load of laundry or cleaning up the house a bit. I know my fam can’t really help much with L, so I have them do other things like our laundry, or cleaning up a room, or folding our clothes, or do our grocery shopping.

    Has he always had trouble sleeping?

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    • Kate,
      I am doing okay after a few days since that post. Mark offered to take over last night but he fell asleep early and I didn’t want to wake him, his work is stressful and he gets about 5 days off a year (holidays), so I went to bed in Connor’s bed last night and next thing I know it was 6:30am!!!!

      I KNEW the one night I had help offered to take the night shift with Cor would be the night the little turkey actually slept through the night! He slept 9pm-6:30am! That is unreal. And Mark? He is STILL sleeping ( he went to bed at 7pm and told me to wake him up when I wanted him to get up and take over with Corrigan) I suppose he will be plenty rested to take over tonight because no way that kid is sleeping through the night TWICE. lol

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  2. Just wanted to give you a hug. Sounds really tough. I understand your pain cause I live some of what you described out daily with my LO. Wish I had better words of comfort. I pray that the Lord would bless you with His grace to make make it every second of the day. That He would sustain you through this trial. And that He would grant rest to the ones He loves.

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