Choice Quotes From Jack

Some of my favorite quotes from Jack’s twitter account.

(Holding up Yogurt Drops and Wheat Things) “I feel up for a little fusion.”

Those are old school cool! They’ve been around since I was like 1 or 2.

Why is it so peaceful here? I want to be a hero but there’s no chance here!

In the sense that I have all the parts I need, I’m complete. But in the sense that I’m still growing to be a grown up, I’m not complete.

The bad thing about getting older is that things get harder.

Sometimes I eat more sophisticated chicken.

I feel like chicken filled with whipped cream instead of muscles.

You know why I’m like this – it’s because of the droids! (Just wrapped up a week of steROIDS.)

Being all amazing and things is not hard at all for me.

Maybe in the future, maybe in 20 years, we can learn to make magic happen.

I have three parts: good parts, bad parts, and dragon parts.

You can’t touch time. But a clock can!

Milk glues bones together in a tasty way.

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It’s Not About You

Six-year-olds are jerks.

Did you know that? - I love being a kid because when I act like a jerk my mom will totally blame herself.

We’ve been struggling for weeks and weeks with all manner of things with Jack. Finally I went back to the parenting bible I had browsed a year ago – Your Six-Year-Old by Ames & Ilg – and everything became clear. I’m not failing and cancer isn’t stealing Jack’s youth and soul. He’s acting like a jerk because he’s six!

I don’t know why this surprised me. I’ve experienced similar revelations about other frustrating ages and stages. And as each year passes I revise my opinion that the age we just said goodbye to was the worst. Because seriously, kids only get more complicated with age!

But six…I really can’t imagine much worse. At least it’s well known (possibly because we remember them better) that the teen years suck. I remember enough of my teen years to know that I was a royal asshole and nothing my mom could do would have changed that fact – it was like I was implanted with a rage generator. I do not, however, remember much about age six so I just assumed it was mostly shiny and happy. I remember loving school, after all!

My memory is obviously faulty.

It’s always been amazing to watch Jack’s mind work, but now it’s getting scary. He understands – and correctly uses – sarcasm. He imagines up new species and describes their evolution – and it sounds plausible (and sometimes it’s a real thing that he thought he made up!). He states facts about science that *I* have to look up. His mind is getting sharper while mine is slowing down.

He is getting smarter than me, people!

He doesn’t know that, though. He’s still under the impression that adults know everything (although he argues anyway) and he doesn’t want to be an adult quite yet because he’s intimidated by how much it seems he has to learn first. Still, he wants to be important and he wants to be heard. He’s just unsure whether that is a function of age or something else. The uncertainly and anxiety have given him a raging case of “short man syndrome.” And the best person to take that shit out on?


At least in our family it’s that way. Sure, Jack is a jerk to his other parents, too, but I seem to draw most of his ire. Maybe it’s because I’m the reminder of how much he has yet to learn. Maybe it’s because he feels safe and secure with me, thus he can act like a complete asshat and know that I will still love him 150%. Or perhaps it’s just a function of the mother-son relationship. I don’t really know.

In any case, I now know that it’s not about me.

And now I’m telling you all, too, so you don’t agonize like I have been: it’s not about you.

You’re welcome.

[Jack is seven soon. Please tell me the madness stops…]

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A Plant In A Boot Saves The Day

Jack has these meltdowns sometimes. He gets so agitated and upset that he starts making all kinds of noises – growling and moaning and seething. He kicks and hits things and looks wild-eyed. He rocks and flails. He is SO UPSET and his whole body shows it. He radiates stress.

When he was a toddler, it wasn’t that big of a deal. It sucked, but it was usually in connection with being overtired and overstimulated. The best way to handle it was to let him go at it in a darkened room. He was smaller and less destructive then.

Waiting it out is harder these days. He can cause real damage to himself and the stuff around him. The dark room doesn’t seem to penetrate the haze and he gets even more upset if we try to hold and hug him.

So last night when Jack went into his tailspin (because I had demonstrated to him why I didn’t like to be climbed on), I was at a loss. He didn’t want to be held or massaged or even talked to. I tried anyway, but he was completely out of control of his own faculties and I had to just get out of the way lest I get kicked in the face. When I reached the point where I just wanted to yell at him to STOP IT STOP IT STOP IT, I realized I needed to leave the room.

I traded places with David and he wasn’t much more successful than I was. Instead of Jack calming down, the tension kept building. David tried to get him to think of happier things but that just seemed to piss him off more. Finally, David passed the torch back to me and left the room.

A few minutes later he came back, this time with one of Jack’s plants. He had recently planted some Dragon Tongue beans and the sprouts are shooting up fast. Jack started to calm when he saw the sprout, and then he had an idea. He asked for a boot and David complied. Then Jack created an ode to WALL-E:

This helped immensely! You can’t help but smile at a plant in a boot, right?

I then offered to read one more chapter from The Strange Case of Origami Yoda (<-sponsored) so that Jack had a bit more time to wind down and all was then well with the world.

But who would have predicted that a plant in a boot would do the trick? What will the solution be next time??

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Leukemia, Section 504, and Education Planning

I met with Jack’s first grade teacher, the school principal, and the district nurse yesterday to discuss a 504 assessment for Jack. If you aren’t familiar, Section 504 is part of the Rehabilitation Act that protects students with disabilities. Since Leukemia is a chronic, life-threatening illness that impacts his learning, working, and performance of manual tasks, he qualifies as disabled. Once a 504 assessment is made and it’s determined that a student qualifies, an IEP (Individualized Education Plan) is typically created to address the student’s needs in school.

Obviously, it’s taken me a while to get in gear and ask for this. The irony of requesting this assessment now is that Jack has caught up to his peers in most areas of concern since he started back to school in October. With that said, he is failing Physical Education, missing quite a bit of school, and his self-esteem and confidence are low. His stress level is difficult to manage even on a good day.

I was nervous going into the meeting. Not only am I still getting used to being an advocate for another person – a person whose needs have changed dramatically in the last year – but I’ve also read complaints about parents’ frustrating experiences with schools when enacting 504. I worried that I might get pushback from the school because Jack really is performing well. Thankfully, the school officials were all very understanding. I feel like we are off to a good start in helping to get Jack some relief.

In our hour-long meeting, I summarized Jack’s medication and treatment routines, explained how his health and side effects of treatment can impact him on any given day, and shared my concerns related to the challenges these things present to his education. Mainly it boils down to the fact that Jack puts forth so much additional effort in order to meet standards because of these challenges that it has compromised his emotional health and feelings about school.

We recorded the following challenges that impact Jack’s ability to learn:

  • Sensitivity to temperature changes
  • Bone and joint pain, soreness
  • Catheter in chest
  • Lowered muscle definition
  • Difficulty with coordination
  • Delayed reflexes
  • Shortness of breath
  • Dizziness
  • Weakness/fatigue
  • Attention/focus impacted by chemo treatment levels
  • Monthly steroid impacts mood and ability to cope with expectations
  • Medication taken at school, can get headache near time of receipt

Based on these things, the school will make accommodations for him to aid his learning in the following ways:

  • Additional time to complete assessments and assignments
  • Extra opportunities to repeat and explain information and directions
  • Extra time to respond to information and questions
  • Teacher will provide parents with work when child can’t attend school (to be completed if he feels well enough)
  • PE accommodations, such as alternate responsibilities/tasks
  • Teacher will remind Jack to eat and take snacks to accommodate his lack of appetite and slowness/distractibility when eating

This plan is a bit vague, but it should be enough to give the teachers the ability to customize the help they give Jack without making it a big production in front of his peers. I’m hoping that the additional understanding of Jack’s health issues from his teacher’s will take some of the pressure off of him and maybe that will even result in less self-injury! That’s my hope anyway.

I felt so relieved when I walked out of that office! I alternately wanted to cry and giggle hysterically. I didn’t have to push for any of this and it felt like I was part of a team that has Jack’s best interests at heart. There are people who have access to things that I don’t and they are going to help my child – we aren’t alone and we don’t have to spend tons of time blindly fumbling around the educational system.

Instead we can spend our time blindly fumbling our way through the parenting of our chronically ill kid! It may be a small victory but I will take it!

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The Great Shoe Struggle Of ’13

Last week I threw my hands in the air and waved them around like I just don’t care whole self into the challenge of finding shoes for Jack. We did end up finding a pair at Payless. They are Airwalks (really) and look like this:

They only had this single pair in a size 13. 13 is the cap on “little kids” sizes or something. And then they go to 1 again. And have different styles and such.  Or something. I’m no expert in kids shoes. Or adult shoes, for that matter. I own a bunch of pairs of Clarks and a couple pairs of Roxy and that’s it. (I’m picky, too.)

Anyway, these shoes aren’t available in big kids sizes. And they are girl shoes – not that I care but another kid at school did make fun of Jack for wearing girls shoes. Kids are jerks.

Summer is coming and we live in a hotter climate that we used to. It’s likely to be 90 degrees regularly this summer. Not to mention Jack’s feet are going to grow. And a single pair of shoes gets worn out QUICKLY. He needs more shoes!

So, like I said, I threw myself into the challenge. I ordered nine pairs of shoes from Zappos (since they do free shipping and returns) in a variety of brands and styles. They all looked lightweight and comfy. They arrived yesterday and Jack tried them all on and in a matter of 15 minutes or so they were all deemed AWFUL.

I have illustrated the reasons below:



My kid can’t even wear Crocs, you guys! Or Keen, Lacoste, See Kai Run, Sanuk, Cienta, or Morgan & Milo. He really wanted those brown Crocs to work – he loved the yeti on them. He chanted “please oh please oh please oh please” while trying them on. Still, no luck.

And yeah, I tried to get him to try them without socks. He refuses to not wear socks. He wears socks to bed! Feet must have socks!

So I packed up over $400 worth of shoes into a box, and back to Zappos they shall go. Thank goodness for a generous return policy!

** This post is not sponsored but I would totally accept money to ease my emotional pain.

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