Max will be 10 in a few months. In nearly 10 years, I have not slept through the night. Even when I'm alone, for various reasons, I do not sleep anymore through the night. Before Max, it was not uncommon for me to sleep in until noon, or take a mid-afternoon nap, and definitely sleep through the night.
But, like so many aspects of life, Max has changed the way I sleep. Because Max does not sleep, I do not sleep. One of the first clues that something was "wrong" was the fact that he did not sleep. He cried, like a cat, maaaaaow maaaaaaow maaaaaaaaaaaaow, all night long. His neurologist put it best one time when I called, exhausted, and asked what was wrong, why doesn't he sleep, how can we fix it? He simply said, "His brain is not normal, he will not sleep like you and I sleep, his brain just doesn't work that way."
We have tried different sleep aids, melatonin, magnesium, and harder medicines that will keep him asleep....if only he would go to sleep! We actually went through a pretty good stretch for about a year of him sleeping, only waking a few times through the night to be repositioned. Max wants to roll over, or pull his covers up around him, but he's in a body that doesn't work for him, so he needs someone to do that for him.
But then, the seizure monster returned. Precocious puberty opened the door for the monster to get in, and he's plopped down right in the middle of Max's bed, flicking his nose just as soon as he drifts off...or jumping on the bed shocking him awake in the middle of a sleep. Sometimes, he just tickles him...tickles and tickles keeping Max awake and talking all night long. Then there are times like Friday night, which had him so agitated that he screamed and screamed and kicked and hit. At those times, I beat the seizure monster back to the corners of the dark room with the strongest of seizure monster medicine.
It calms Max, he melts into his Batman pillow toy, and falls into a heavy deep sleep. And sleeps. And sleeps all through the night, and all through the following day, and sometimes the following night.
You may think, ah - sleep then!...but if only it worked that way. Especially when he needs the heavy medicines I sleep lighter. I check his breathing. I check if he can't get turned over because he's sleeping so hard. I sleep with my hand on his chest, feeling the rise and fall of his breathing. Then I will doze, and sleep.
Last night, after sleeping for about 20 hours, Max woke up. He did not want to go to sleep when it was time for bed. He wasn't upset, or having seizures, he was just awake because he had gotten such a heavy sleep all day and the night before. So, I held him, and patted his back, and Steve got up and did the same through the night. It is not only me who is up through the night, although I'm not able to sleep through it.
At 4:00am, I pulled Max onto my lap. His full 70 pounds feeling like a thousand. His body felt like an earthquake was going off inside...little tremors, jolting him awake, keeping him awake. I had a choice early in the evening to give him more of the strong medicine. He would sleep, I would rest, Steve would sleep. But, today, we would be in the same situation of him sleeping all day. We would spend another day stuck in the house watching him sleep in a dark room. So, I held him. And we rocked, and we swayed, and we beat that monster back to the dark corners of the room just by holding on to each other.
By 5:00am, he was asleep. My head resting on Batman. My legs aching and tingling from his full weight resting on me. I slipped out from under him, and he rolled over to sleep, a good heavy sleep. I rolled over and closed my eyes for three hours. When he woke again, with the sun was shining in the room. The dogs wanted out for their potty time...as they are the only living things in this house that get all the sleep they want. I said good-bye to Steve as he and Abbey headed out for a fun morning.
Max looked at me and smiled. His big toothy grin. And I asked him pretty please to let me sleep just a bit longer. And he agreed, but only for another hour. No need to waste the day sleeping, Momma.
There's a chapter in the book I've been writing for a million years called "A History of Sleep" and it goes much as this post has gone. You know what, though? Sophie began to sleep much better at some point AFTER her tenth birthday, so I'm keeping my fingers crossed that Max does as well.
AND -- our neurologist recently told me that her kiddos with cerebral palsy who've struggled with sleep issues for many years are finding great success with medical marijuana!
I am hopeful. And I believe one day the neurological community will throw their hands up and try MMJ because our doctors hate seing our kids seize as much as we do. And THEN we will find that cure.
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