He has always gotten by on minimal sleep. Chemotherapy is supposed to make you tired, right? Not this kid. He had 8 fairly intense cycles of inpatient chemotherapy as an infant. Six months' worth. It was not uncommon for him, at less than one year of age to nap less than an hour during the day. So...imagine a restless 12 month old baby, far from walking independently, but very adept at crawling, tethered to an IV pole for 3 days straight while toxic poison is pumped into him, then flushed with saline (constant peeing, constant diaper changing). And the only napping he does is dozing while nursing. Good grief! Reliving it makes me tired.
He finally started napping every day at around age 3. That's right, when a lot of kiddos are trying to give up an afternoon nap, John finally agreed it would be ok to take one. That ship has more or less sailed by now, though, as he's nearing his 6th birthday.
John never slept in a crib. He quietly and unobtrusively co-slept with us. Well, quietly after he was diagnosed and on the road to healing. Before that he screamed all night long. Anyway, he would lay in bed quietly, waking to eat, maybe going back to sleep, maybe not. When we moved him to his own bed, we moved along with him because he had a TPN + lipids (think intravenous Ensure shake) infusion going on all night long, so we couldn't risk him getting out of bed or getting tangled in the IV lines, etc. We would all go to bed at the same time. Matt & I would fall asleep quickly, and John would be just as likely as not to be just laying there, wide awake.
When we were able to move to our own bed, one of us would put John to bed and lay there with him until he fell asleep, at which point we would sneak out of his bedroom. Well...three hours later...invariably the one of us on bedtime duty would give in to sleep and end up sleeping with the boy while he was staring at the popcorn ceiling of our old farmhouse.
But...obviously...I have digressed.
Knowing that he struggles with getting up in the morning, I was looking forward to allowing him to sleep in on long, lazy summer mornings when preschool ended this spring. I wanted him to stay up as late as he wanted catching fireflies and roasting marshmallows. I did not want him to go to summer school. I felt very strongly that he should have the summer off from school before starting Kindergarten. I feared school burnout before his school career even got off the ground.
John, however, insisted on going to summer school. It's a full day; preschool was only a half day, so I knew his little butt would be dragging after a few days. He went to summer school Monday and Wednesday of this week. (I'm typing this Wednesday evening). Tuesday was a big day of doctor appointments, capped off with a visit to an arcade/giant indoor playground. He had a baseball game tonight, so by bedtime, the...boy...was...tired.
When I put him to bed tonight, I reminded him that he needed to go to sleep quickly because he would have to wake up super early for school in the morning.
He said, "Ugh! What day can I stay in bed and sleep late? I don't like to get up early."
I said, "Well, you can sleep late on Saturday, and then every morning except Sunday after summer school is over."
He said, "Man, I'll sure be glad when school is out so I can sleep late in bed."
I did not say, "JOHN CLARK! I TOLD YOU SO! I TRIED AND TRIED TO CONVINCE YOU SUMMER SCHOOL WAS NOT FOR YOU, BUT YOU WOULD HEAR NONE OF IT!"
But I sure wanted to.
And...in other news...more important news...John's five-year-post-diagnosis appointment was yesterday. The exam went well. He appears to be a 48 pound picture of health. We're still waiting on the lab results on his catecholomine urine test. (it's a test that checks specifically for neuroblastoma tumor markers in the urine) We and his doctors have no reason to suspect this test will show anything outside the normal range, but I am still biting my nails as I await the phone call from our oncology nurse practitioner telling us all is well.
Thank you for reading this tonight. Thank you for your support of our family through the last five years. Thank you for loving John. Thank you for praying fervently and unceasingly for his healing.
Thank you.
