Doors

It happens at bedtime. Wild-eyed and almost vibrating with anxious energy, Jack zooms through the house. He sweeps down the hall and into his bedroom, from which I hear frantic murmurs. Moments later he zooms out again and I catch him up in my arms to steady him. I feel his heart beating rapidly in his chest.

I ask him what’s wrong.

“I don’t know. I don’t feel right. Do you ever feel like you’re stuck in a dream? Do you ever look in the mirror and feel like it’s not you looking back?”

Yes, I say. Many times.

He doesn’t really hear me. He disengages from my arms and zooms around the room again, first toward the kitchen, next toward the door. “Doors,” he mutters and reaches for the knob. I say no and he turns on his heel and makes a beeline for his bedroom again.

I follow. He sits in his desk chair and taps his fingers on the desk. His brown eyes fill with tears and dart around the room.

“My brain doesn’t feel right. I think I’m broken.”

He goes on to tell me that everything is boring. He says that fairytales are lies that are written to cope with the fact that there is no real magic in the world. He reads them and he feels hope and then reality returns: there is no magic, there are only lies. He will never have adventures. He will get up in the morning and eat his boring toast at the boring table and then go to boring school…it is all so awful.

His eyes meet mine and he pleads, “Is there something that can fix this?”

He says he worries about taking pills. He worries he is not meant to take pills, that he is meant for something that the pills will suppress.

Where did he get this idea, I wonder… How can a 10-year-old even possess this level of critical thinking?

“I don’t know how to fix this, Son, but I have ideas for what to do to help right now. You don’t have to figure it out on your own.”

First I give him headache medicine for the pounding in his head. Then we find a music station on his iPad, a soothing station of instrumental lullabies.

Draw, I tell him. Draw the monsters that are in your head right now. Draw and listen to the music and breathe while I make a cup of tea.

I come back with a steaming cup of minty tea and hold it under his nose, telling him to take a whiff. He does and then continues drawing.

He sketches twisted faces, pairs of eyes, a vortex, a banana tree. An instrumental version of “Hey Jude” plays while he draws. A calm settles over him.

“I’m feeling better,” he says. “I’m starting to forget the thoughts. I just need to draw this one last thing.”

He draws a door. “I kept seeing doors,” he explains as he puts his sketch pad aside.

We climb into his loft bed together, where he sips tea while I read to him. He is mostly back to his easy-going self by the time I tuck him in and say goodnight.

I breathe a deep sigh as I walk away from his bedroom door. I am bewildered. I don’t know what happened to my son this evening or why it happened, but we got through it together.

It is behind him, for now. It is my turn to cry.

Living That Normal Life

For the first time in nearly five years, Jack’s latest lab results were normal! While he finished cancer treatment over a year and a half ago, his body has taken its sweet time showing us that it could function normally. The last hold out on the labs was his ferritin level, which stubbornly refused to come up even with liquid iron supplementation. Finally, though, he’s off of supplements and his ferritin is normal!

Health aside, Jack is mostly living a normal life as a regular 5th grader. He’s been improving steadily in school thanks to a teacher that is pretty laid back and increased time in the resource room for math help. He even likes math sometimes!

Oh, and he can tell time now. That finally clicked when we got him a smart watch. He played around with the time display a lot and I think that helped him understand how time works.

Who knows, the increased ferritin level could also be a factor. (Apparently low ferritin can impede brain functioning.)

Things have improved considerably for all things Jack-related. No more fits over homework, very few missed days at school, and mood stability. In our darkest cancer days, we never thought we would get here. It’s pretty incredible!

At the end of January, Jack will reach 5 years disease-free. He survived.

We all survived.

Brothers

Jack and Dez on Thanksgiving.

Double Digits

Tomorrow my first born son is ten years old. Double digits.

I’ve been trying to avoid thinking about this date as it loomed ever closer. The thought of Jack being TEN caused panic to bubble up in my chest and claw at my throat. My eyes would burn with tears and I had to hold back from clutching him tightly to me.

I didn’t don’t feel ready for this.

But the time is here nonetheless.

Jack almost 10

Looking like a teen!

One would think that after ten years as a parent I would feel more ready to let Jack grow up and move into the next stage of his life. But I haven’t been spending my time over the last decade preparing for this moment–not at all. After his cancer diagnosis, I focused on preserving his childhood as much as possible. And before that I spent a lot of time working to figure out how to be the mom he needed and haphazardly uncovering my own issues along the way.

I feel as if I’ve been sidetracked so many times. I’m not sure I’m much closer to knowing what I’m doing than I was on the day he was born. In fact, I feel that only now am I getting to the point where I can see the breadth of what I don’t know about raising a person to be a self-actualized adult. And I guess while focusing on all of that I simply forgot to prepare myself for the whole growing up thing.

But Jack will keep on growing even if I waste time being hung up on worries over the future.

Jack is an incredible human being. If I stop thinking about my own experience being his mother for even a second, I know that he will navigate the coming years in his own way and craft them into an adventure as he goes. That same creativity and empathy that seem to emphasize his youth right now will also help steer him on his path to becoming an amazing man.

I really just need to stand back and let it happen because, whether I’m ready or not, Jack is growing up.

Crystal and Jack in Bath

On an adventure together in England.

My Two Boys

I’m not sure that I say this enough, but I have two amazing kids. They are both sweet and adorable and they make me laugh constantly with their bizarre shenanigans. They take my breath away on a regular basis.

How? How did I get so lucky?

It’s incredible to me how different from one another they are, though. I can’t help but marvel at how two kids that have been parented mostly the same can be so very different. (Nature, I guess!)

Jack, my first born, is creative, funny, and sensitive…he has always had a carefulness about him that makes him seem older and wiser than his years. He has a unique way of looking at the world that influences everything he does – and really, everyone around him.

He worries about the future…about growing up and his childhood being gone before he is ready. I find it a bit strange considering the fact that his life thus far has not been exactly carefree, but it is one of the reasons why I am endlessly curious to see what his future holds and how he navigates this life.

Jack and dragon drawing

Showing off his dragon drawing at the oncology office.

Dez, on the other hand, is fearless and determined, albeit goofy as heck. He is not even two yet but this kid is full of energy and life. He never stops moving and is constantly keeping us on our toes. He reminds me of that old game on ancient cell phones called Snake. As the snake eats he keeps growing and getting bigger than he (or anyone else) can handle. But no matter how big he is or how many things he runs into, he gets back up and redirects himself around the obstacles.

His drive is completely foreign to me but already I admire him (all while knowing I will go fully gray by the time he is a teenager).

Dez taking a walk.

Dez taking a walk; he loves going outside.

The boys love each other so much. When Jack comes home from his dad’s, Dez is so happy he breaks into peels of laughter. He just can’t contain himself. They play together often – sword fighting with pool noodles or tickling one another or chasing each other around furniture. Our house is loud and boisterous.

I wanted this, dreamed about it for years, yearned for a house full of children laughing. I have my dream life!

I don’t always enjoy it, though. It’s not so easy to remember to do that when I’m running around preparing various meals, running to doctor and dental appointments, struggling over homework or diaper changes, constantly picking up after a toddler who doesn’t stop moving, the lack of sleep… It’s hectic and it’s easy to get swept away in the whirlwind of life with young children.

But I cherish these boys and my little family with every fiber of my being. I hope they know it.

Progress in Getting a Better IEP

After many years of back-and-forth with Jack’s school, we have finally gotten an IEP that I think we are all happy with!

For the first time since we started meeting with the educational team at the school back in 2013, they didn’t fight us on where Jack is academically. Everyone agreed that he is demonstrating the long-term effects of his cancer treatment. Everyone agreed that what we’ve been doing so far has not helped. Finally, the school accepted that the holes in Jack’s learning would not just magically fill up again now that chemo is done. They have conceded that Jack has a huge gap between intellectual ability and academic achievement in math due to processing problems (i.e. dyscalculia), memory, and attention issues.

fear of math

Does not compute… Photo © Jimmie, Creative Commons usage.

I can’t tell you what a relief it was to walk out of that IEP meeting last week and have plans in place – not just HOPE but plans.

Jack has four new goals written into his IEP, including learning to tell time*, learning to count money, practice basic math facts so that he can get 80% accuracy, and fraction learning in the resource room prior to learning it in the classroom. Accommodations will include shorter assignments, untimed classwork, and the teacher will make sure he understands instructions/repeats them back before left to do the assignments.

Jack previously had time one day per week in the Resource Room (which amounted to 75 minutes per month) along with two other students and no individual help. Now he’ll spend time three days per week in the Resource Room and one of those will be solo with the resource teacher!

It feels like the future is looking brighter! Even if these things don’t work, we’ll know more about whether Jack can learn certain things if taught in a different way or just…not at all.


* Jack has no concept of time – not hour of the day, not day of the week, etc. He can’t tell how long something takes or how much time has passed – whether it is nearing bedtime, whether it’s late or early in the day, or what day tomorrow is. He floats along and has to have everyone around him tell him what to do next. This makes time management impossible! Part of the problem is that he can’t hold onto information about sequences longer than maybe two steps (so even if he does know that today is Monday and tomorrow is Tuesday, he has no clue where those days fall in the sequence of the seven days of the week). Another part of the problem is that he has trouble with assigned meaning of things – i.e. a quarter is worth 25 cents because someone long ago decided that was the case; the value isn’t inherent to circular pieces of metal of that size. He can’t wrap his brain around that. It’s like it’s another language that he can’t comprehend – the language of sequences and numerical meaning.