Sleep doesn’t help if it’s your soul that’s tired. Unknown
When Jimmy was a toddler, he didn’t like to nap. In contrast to his first love, Kelsey, who would sleep for four hours every afternoon from 1:00 pm to 5:00 pm and then to go bed at 7:30 pm, Jimmy had a hard time settling down in his crib. I tried to convince him that if he would just relax and lay down, sleep would come and he would fall asleep. Instead, he would stand in his crib, hold on to the railing and jump up and down. He would talk to his stuffed animals and fling his books over the side. He would call out to me over the baby monitor, asking for water, snacks, more books, a different stuffed animal, and when I arrived in his room, he would announce, “Sleep is not coming to me, Mommy.”
During Jimmy’s cancer odyssey, I learned to sleep anywhere and everywhere — a chair in the pediatric oncology waiting area, the miserably uncomfortable pad that passed for a mattress in his hospital room, our couch at all hours of the day, a chair at our dining room table, even at our kitchen counter while sitting on a bar stool. Between my fears and Jimmy’s medical needs, sleep was in short supply, and I grabbed it whenever and wherever I could. I’ve always been a night owl, which means I am perpetually sleep deprived anyway, so falling asleep had never been an issue for me.
After Jimmy died, it was a different story. I love the bed that Dan and I sleep in. The mattress is firm, the pillows are just the right amount of poofy and in February, the month Jimmy died, we sleep in the warmest, coziest blue flannel sheets. But no matter what time I crawled into bed, no matter how tired I was, no matter how little sleep I’d had, I couldn’t fall asleep. My thoughts would race, and I would replay all the most awful moments of Jimmy’s illness and death. Did I do all the medical research I could have done? What if I had asked Dr. Nicholson to add (or subtract) one of the drugs from Jimmy’s low dose chemo protocol? Shouldn’t I have paid more attention when his sodium levels dropped just before his final Christmas and thus been able to prevent the seizure he had on Christmas Day?
I got to a point where I hated going to bed. Dan and I would read until we were sleepy, Dan would fall asleep immediately and I would lay there wide awake. Eventually, although sometimes not until the wee hours of the morning, I would finally fall sleep, waking only when my alarm went off and then feel too tired and too heartsick to want to get out of bed.
Because that’s the bitter irony of soul fatigue. You have a hard time getting the sleep you so desperately need but when you wake up, all the memories and pain come rushing back in, and all you want to do is put your head under the pillow and go back to sleep, for the light of day brings no peace.
The passage of time has helped. So has exercise, no caffeine late in the day, no hot fudge sundaes late at night. Nowadays, I’m better able to fill my thoughts with happy memories of those I love most who are no longer here instead of focusing on their worst days and mine. On those nights when I just can’t nod off, I use some of the orange ginger hand lotion Jimmy loved and wear the lavender scented eye pillow he gave my mom to soothe my tired soul as I wait for sleep to come to me.
