To Sleep or Not to Sleep; That is the Question


Oh how I love my sleep and for me that is the irony of being the Doodle’s mom.

Seriously, I have not had a good night sleep since before the Doodle was born. The last trimester of pregnancy I was so uncomfortable and had to pee so much that solid, uninterrupted sleep was not in my forecast. Then he was born. And he was never a good sleeper. He would wake himself up all night long with these weird-falling-bad-dreams and startle himself awake. I couldn’t wait for him to grow into becoming a good sleeper. That never happened. Just to get a few hours of sleep I allowed him to sleep with us. Because God forbid I moved him or even sneezed, he would wake up and be awake for hours, crying.

His entire infant life he would hold his breath and stop breathing while he slept, for up to 25 seconds. I would shake him to wake him up so that he would start breathing again…then he would gasp for air; which most of the time woke him up. I found out later after several doctors’ appointments that he had severe sleep apnea at just age 2. Part of what they thought caused the sleep apnea were his enlarged tonsils and adenoids. This made sense because he was constantly sick with upper respiratory issues and colds. So again, sleep apnea was interfering with his sleep (and ours).

Then at about age 2 1/2 the seizures started. The big, scary grand mal seizures—if you’ve never seen one it’s about the worst thing you could ever watch someone you love experience. It’s the most awful and helpless feeling I’ve ever had in my life. So the doctors thought maybe the sleep apnea and lack of oxygen to the brain could be a contributing factor to the Doodle’s seizures—so we elected to have his tonsils and adenoids removed immediately; hoping that would solve everything. Nope. While having them removed has helped with him not getting sick so much, the seizures kept on coming. And the sleeping never really got much better either. He’s still a light sleeper who wakes at least 5 times a night.

So to monitor the Doodle’s many seizures and try to get him the best sleep possible, I would sleep with him and cuddle beside him. Which, besides being a light sleeper, he now cannot sleep on his own. He’s now become so dependent on someone sleeping next to him—he can sense when he is left alone in the bed—even if it is just in the middle of the night for me to get up to go pee for 3 minutes.

We’ve done everything we can to accommodate his sleep issues. We even bought a King bed because he’s pretty big and likes to crowd me to the edge. Yes, he’s been known to push me out of bed a few times. Lately, he’s been having more and of the scream out, stiffen up seizures. It might look like a bad dream but his eyes roll back in his head and he usually stiffens his legs or arms. These last only 3-10 seconds but leave him a little disoriented (and me too) and then he usually goes right back to sleep.

Last night he had around 10 of these episodes. We really need to get him into Stanford to do another sleep study but that will be brutal on him. Immobile and stuck in a bed for 48-72 hours. The thought of it gives me a panic attack.

Laying there last night, listening to my hair grow because I could not get back to sleep, I couldn’t help but remember how sleep used to be one of my favorite things to do. I cherished my sleep and sleeping in. I could easily sleep until noon. The last time I had really good, uninterrupted R.E.M. sleep was in 2007 when I underwent hours of sedation dentistry. 

I had just returned from a 3 night trip to San Diego in a plush 4 star hotel with a King bed all to myself…crisp white sheets, a down comforter and black out curtains and do you think I was able to get any sleep? Nope. Now, I cannot sleep without that little back-kicking-sweaty-head assaulting me all night long. I actually missed his Doritos breath blowing my hair back and his one leg draped over me. That’s my ironic sleep story and I’m sticking to it.

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