I told you so!

John is not good at getting up in the mornings. This is mostly because, no matter if goes to bed at 8:00 or 10:00, he is just as likely as not to lie awake in his bed, completely still for one to three hours before finally giving in to sleep. If he takes an afternoon nap, it is all but impossible for the child to go to sleep. He typically goes to bed with minimal protest, but sleep is elusive.

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.

Sleep

Supposedly, it's right up there on the list of human needs along with food and water. But I'm here to tell you today that sleep is overrated. I don't think I've blogged this topic before.  Warning: some deep, dark secrets and personal character flaws are about to be revealed.

Why?

I think because in my mind, I've worked this out to be our own personal cross to bear, refusing to believe anyone else has experienced/is experiencing what we are.

So, I don't like to hear:

"Oh, I know that's just awful. You must be exhausted. Billy never slept well until he was in the 5th grade"

Seriously, you think this is helpful...5th grade is 10 years away!

or (worse),

"Oh, I've been through that. It'll get better. They grow up so fast!"

Whatever. Clearly you have no idea. If you did, you wouldn't say something this stupid to me.

or (worse-er),

"Well, that must be awful. I can't even imagine what that's like. I was so lucky that my kids always slept through the night."

Why are you telling me this!!!!! Is this supposed to make me feel better?

or, the one that causes the most rage:

”Wow, we've always been so lucky with Sally's sleeping; I know I couldn't get up and go to work if I didn't have a good night's sleep the night before."

WHAT!!!! HELLLLLOOOOOOO?????? I WORK TOO! I cook clean-up after at least 3 meals a day AND run an increasingly busy accounting practice. ***have to admit here though, this has gotten better because I finally put the boys in daycare mornings 4 days a week.***

Keep in mind the person forming all these mental responses (me) is not playing with a full deck. Sleep deprivation makes a person cranky and irrational. All of the above statements were likely intended to be sympathetic, rather than rage-inducing. And, I realize that I too have found myself guilty more than once of saying a variations of these stupid things to desperate moms.

Ok, so back to my thesis: "sleep is overrated."

John taught us that a body can function on less than the recommended 7-8 hours of nightly sleep. A lot less. The first night John was at home, he screamed the.entire.night. All of it. I'm not exaggerating. His sleeping was terrible. The irresistible question from friends and strangers alike seemed to be, "Does he sleep well?" And when I would answer honestly, I would get one of the aforementioned responses. Well, that got old, so I kept it to myself and put on a happy, perky face.

So, nine months later, we found out that he had a big, giant tumor. And another little tumor. And diseased bone marrow. Hmm. Maybe that's why he couldn't sleep. (wouldn't eat and couldn't poop)

By this time, we were already accustomed to sleeping with him. It was the only way any of us could get any sleep. The time he spent sleeping in his bassinet was literally a few hours. Not a few hours at a time. A few hours. TOTAL.

The time he spent in his crib was similarly limited. The only way any to get any sleep was to become co-sleepers. So we did.

By the time we got to June and his diagnosis, we were well accustomed to sleeping with him, so sharing a hospital bed wasn't that much of an adjustment, though it took some convincing (and a power struggle between me and one of the nurses) to get approval to have a regular hospital bed and not a baby crib for our room. (that's probably a whole blog in itself)

We continued to sleep with John all though chemotherapy and beyond. It wasn't a big deal He was a quiet sleeper, even if a light one. He would lay there in his bed, perfectly still, literally for hours, just staring up at the ceiling, as Don Williams's Greatest Hits played over and over and over, until Matt or I would give up and fall asleep ourselves. We'd wake up and sneak out, then repeat a few hours later. Nothing but sheer willpower kept him awake.

You're probably wondering, "Why didn't you just Ferberize him?" (that means let him cry until he learns to go to sleep on his own.) Well, we did try that a few times between 6 and 9 months. Turns out, HE HAD CANCER! That's some guilt I don't want any other parent to know. And why didn't we Ferberize him later? Like after he was perfectly healthy? Well...it's not really an option when your child's bedroom doesn't have a functional door. And it wouldn't have worked anyway.

Finally, a few months shy of his third birthday, John's sleeping problems disappeared, and he's slept wonderfully since. We said, "Listen here, kid. This stops now. Go to sleep, and you will earn a special treat in the morning." Praise God, it worked. (the special treat was a new book)

Wait. 

Don't think for a minute we've enjoyed great sleep since May 2010. Nope, nope, nopey, no, no. Don't forget about PW.

This child (as they usually are, I hear) is a whole 'nother story.

As an infant, he had to sleep upright because he seems to have been born permanently congested. So he'd sleep propped up or I'd hold him all night long. He at least slept some in the bassinet, but went on strike against the crib at about 13 months. That damn crib has been the most useless piece of baby paraphernalia in our house. Leave him in the crib to cry, and puke would ensue. Plus he had the, "I can't breathe. My nose is so stuffy" excuse. "Just hold me and rock meeeeeee!!!!!!!"

He goes to sleep fairly easily around 8:00/9:00. One of us lays down with him for about 10 minutes until he falls asleep, but invariably, he's trotting into our bedroom about midnight. It seems he prefers memory foam. And at least one parent. And it also seems that he doesn't actually really need much sleep.

"Put him back in his own bed!" you (and his pediatrician) shout. Ok...fine...I'll do that. At midnight. And 1:00. And 2:00. And 3:00. I think you get the idea. You think we haven't tried this? And for more than one night? We can get by on minimal sleep, but we can't get by on ZERO sleep.

John taught us to be ok with co-sleeping. Or so we thought. It really wasn't a big deal. Not a problem. We adapted, and we honestly weren't sure why people made such a big deal about kids sleeping with their parents, especially since he learned to sleep just fine on his own once he was old enough to be reasonable.

Now we know. Patrick will not hold still. And, he has to have his fingers entwined in my hair all night long. A hundred times a night, I scream at him, "LET GO OF MY HAIR!!!!!!!!" I imagine Matt gets really tired of hearing that.

We've tried benadryl. It makes him spastic. 

This morning about 5 am, we realized we had lost track of him.

"Where's P. Dub?" Matt asked.

"Uh, I don't know," I replied.

We were imagining that he had gotten up to watch TV. (he can start the wii all by himself...we're so proud of him) Or getting himself a refreshing glass of iced tea. Or fixing a delicious breakfast of bread smeared with honey and peanut butter.

Thankfully, this time he wasn't. Somehow, he had managed to woller to the foot of the bed and was laying perpendicular, just beyond my feet. That's a first. Maybe he was needing some space. Fine with me.

Again, "why don't you Ferberize him?" Uh, well, now we have a functional door for his bedroom...but...he has this other problem. When we last attempted to implement Dr. Ferber's plan, he screamed for about 2 hours nightly without falling asleep. Somewhere in this time frame, he would throw up from screaming. After a couple nights of this, he started turning grey and green, as the wave of anticipatory nausea hit him during the bedtime routine. And the puke happened before he even uttered a single cry. 

We tried this for at least a week with the same disgusting , foul, putrid result every night. And this was not him making himself throw up. This was genuine. He would get quiet as a worried look came over his face. Then his skin would turn cold and clammy, and the parent-in-charge would rush him to a hard-surface (easier to clean up) floor. We usually weren't quick enough.

I've managed to get the smell out of his carpet, but not the stains. I covered it with an area rug. Clever on my part, huh?

Well, anyway, that's where we are now. I get only a few hours' sleep nightly, and then I'm up early, early, long before dawn because my office is gently calling to me.

I console myself with thoughts of how I'll torture him during his teen years by waking him up at dawn's earliest crack. But I know in all honesty, I'll still be catching up on the sleep of which he has deprived me.

"So, why should anyone trust you to do their taxes?" you may be wondering. Well, it's like I said to start with:

Sleep is overrated.