Things I Wish He Could Know

This morning on the way to school, Jack expressed frustration over his interactions with the other kids at recess. He has a really good buddy that he plays with, but he complains that the boy wastes playtime by spending too much time planning (and thus little time actually DOING). I tried to give Jack tips on how he could negotiate more playtime with his friend, including the idea that he suggest they take turns selecting and planning their play. He then said if he were to take that kind of stance, he was afraid he would be acting “too grown up.” And the other kids would know he wasn’t grown up!

I was a little taken aback. After all, when I was a kid I wanted to be grown up! Grown ups had the power, man. And, well, I was the big sister so I was used to being in charge and leading a group. Jack’s only done this by accident – he avoids being in charge and then gets upset when things don’t go his way.

I had a hard time explaining that if he wants to affect how things are done, he needs to act a little grown up sometimes. He doesn’t need to wait for someone to ask if he wants to take a turn – he needs to speak up and let people know.

He has no idea that if he just took the lead, others would follow. He has an innate ability to be a leader but he doesn’t realize it at all – which just makes him more appealing as a leader.

He ended up getting frustrated and upset with me. His reaction to my ‘help’ made me bite my tongue and reflect on the aspect of my personality that he seems to have inherited – a stubborn refusal to listen to others who tell you what you *should* do. (My little sister has this trait, as well. Maybe it runs in the family!)

Why should I do it that way? Why can’t I do it my way? There can’t be only one right way! I’m going to figure out a way that works for me!

And so, I had to acknowledge that my my kid is reaching a point where he is not looking to me for all of the answers. He is more solidly his own little person and he wants to think for himself and learn how things work instead of being told. And his intellect is at a place where he can piece a lot of things out for himself. I need to step back and let him do that. The more I try to ‘help,’ the more he will do the opposite of what I suggest.

Just like me.

It’s a little sad. There are so many things I’ve learned that I wish I could just TELL HIM. I wish I could save him the time of figuring these things out. Maybe he’d get where he needs (or wants) to be more quickly! Maybe he could have greater success than me.

But since I can’t tell him (even if he listens, he’ll either think I’m full of BS or he’ll become a young tyrant) I figured I’d write it here – the life lessons I’ve learned (and yet do very little with):

  1. Confidence will get you (almost) anywhere – even fake confidence. If you act like you know what you’re doing, people will usually believe you!
  2. Fear of an obstacle is usually the biggest thing holding you back – not the obstacle itself.
  3. You can usually get away with winging it – everyone else is making it up as they go along, too.
  4. Most people are too busy worrying about themselves to notice that you’re worrying, too. And those who are overly concerned with what you’re up to are going to run into their own problems pretty quickly.
  5. It’s better to try and fail than it is to live with the regret of having never even made the attempt. (You might have succeeded.)
  6. It’s pretty miraculous that people manage to stay alive. Seriously.
  7. You’ll be amazed by how often success is accidental.
  8. There are a lot of people out there who will want to hold you back for no reason at all. Don’t be one of them.

I know there are more and they will come to me (probably while I’m driving or trying to go to sleep), but this is a good start.

What do you think about my list? What wisdom would you impart to your child if you could?

Progress In Inches

We’ve made some progress this week! Maybe things are getting better!

(I know – I should shoot myself now for saying that. It will all go to hell now that I’ve made a positive parenting-related comment!)

Jack saw his therapist on Monday. Together they brainstormed ideas for how to deal with anger (besides hurting himself). Jack used one of these methods last night – he drew a picture of the thing that had angered him, then ripped it up and taped it back together in a funky pattern. This seemed to give him a bit more control over the situation and he was happy that he “showed it.” I was proud of him!

He has seemed to be more open to talking about difficult subjects since Monday. Back when Jack was diagnosed, we were given an activity book that is supposed to help kids explore their emotions about their chronic illness. Jack has mostly refused to talk about cancer at all before now. But last night I said I had a neat workbook that I hoped he would try and suggested that it would be helpful with some of the frustration he’s been feeling. I sat next to him and flipped through the book, summarizing the different activities. When I mentioned “Things That Make Me Feel Alone,” Jack said he felt alone when his dad takes him to the redwoods and also on an empty street. :( He didn’t want to draw or write that down, though. I moved on and when I got to the one entitled “Things I Hate About The Hospital And Clinic,” he grabbed the packet and took off to the living room where his colored pencils were located. He drew a syringe, an elevator, a dressing change, and he wrote down ‘procedures’ because “I don’t know what they look like since I’m asleep.”

It was interesting that in thinking about it, he said there are several things that he doesn’t mind at all – i.e. the waiting, the examinations, the infusions. I made sure to point that out to him – it’s not all horrible even if it’s boring!

He went on to another page and drew the reactions of people around him when he was diagnosed. His picture showed indifference, the one of his parents showed worry, the doctor looked confident (“like ‘I know how to fix this!’”), and new people he met were nervous.

WOW. I was so relieved that he was actually expressing these things! Jack is a total people-pleaser and doesn’t want to talk about things that aren’t happy or cool because he doesn’t want anyone to be upset. It was part of the reason for the delay in realizing he had cancer – he won’t complain about something until it is unbearable. And even when he does complain, it’s understated – “my throat feels weird” becomes puke two minutes later. “My legs are floppy” means his legs are feeling weak and unsteady and he can’t walk well. The things going on with his body are generally the last thing on his mind (which can be good and bad).

We’ve been encouraging him since he was admitted to the hospital to complain more. I know that sounds strange! But his physicians would ask if he was having diarrhea or headaches or cloudy urine or tingling in his hands and we would have no idea. He’s king of “I’m fine!” But seriously, kid, we need to know if anything at all is bugging you because it can be a sign of something big!

Anyway, he’s getting better. He definitely complains more, although often still in a roundabout way. It’s weird when you have to suggest to your kid that he needs to eat or maybe he needs some allergy or headache medicine! And while I know what to look for to anticipate these things (hm, he’s very intent on coloring that dragon even though it’s lunch time and he is surely hungry!), others don’t and I’m not there all the time.

One thing he definitely hasn’t had trouble complaining about is clothing! It’s been an ongoing battle to find comfortable things for him and sometimes we lose the battle. However, I took him to buy (a third pair of) new shoes two nights ago and after trying nearly every pair in the store on, he was absolutely sure that some fur lined boots were The Ones. He freaking loves them. Yay! Now to find more pairs because those are not gonna last!

I’ve ordered socks without seams (they have them on Amazon!) and socks of various lengths and good quality in the hopes that we can get past his sock issue (also – he doesn’t feel right NOT wearing socks). And yesterday I ordered NINE pairs of shoes from Zappos that looked comfortable – some of which are fur-lined and others that are just fairly trim in design. I hope something works. Summer is coming and he’s not going to be able to wear those fur-lined boots forever. (I’ve tapped out my local resources for shoes – at least as far as how much I can afford!)

I’ve spent ungodly amounts of money on clothing for Jack this year. There should be a special charity for soft, comfortable clothing for kids with cancer!

David took Jack out for ice cream yesterday after he got 10 lilypads colored in on his behavior chart (he gets one each time he finishes homework, brushes his teeth without dawdling, and remembers to not maul the cat). We’re trying to reinforce the fact that he’s good and does good things because he’s WAY too hard on himself. The therapist said we should avoid charts with sad faces since he already focuses on his ‘bad’ behavior so much. Anyway, this seems to be working.

It’s a weird balancing act to parent such a sensitive kid. It’s nearly impossible to discipline him because he already punishes himself more than necessary! I’m not exactly a subtle person so it’s been challenging to dial back my reactions to some of the things he does – even a stern look will have him in tears in no time flat! Thank goodness I’m not more authoritarian – that would crush him!

The insight shared by you all has helped me, as well. I’ve learned that six year olds are very particular and kinda jerky. I’m trying to remember that his behavior is usually not a reflection of what I’m doing (or not doing) – it’s more about what he is feeling or trying not to feel. I can help guide him but I can’t fight all these battles for him.

So…progress for him AND me. I’ll take it!

Jack at Age Six

Jack doesn’t do favorites. He likes all the colors. He likes a variety of cookies and books and animals and activities.

He likes how he looks in black and red.

He doesn’t like obnoxious cartoons. He swears that the sole purpose of Johnny Test is to be annoying.

He prefers Mystery Incorporated and What’s New Scooby-Doo? over the original Scooby-Doo cartoons. He says the artwork looks better.

Jack thinks skateboards are the worst toys ever. He’s “not into” cars or trains.

He’s obsessed with aliens and monsters. He likes dragons a lot, too.

He totally hates it when someone talks about (or jokes about) bodily functions. It will ruin his day and any friendship.

He thinks spiders are cute.

Jack says cancer is “the most boring thing ever.” He doesn’t want to talk about it.

He won’t wear jeans or tank tops. He doesn’t like pants with buttons. He likes knit hats.

He doesn’t drink juice – only water and milk and sometimes Vitamin Water. Oh and he hates carbonation!

Playing in dirt is not his idea of a good time. Sticky things are even worse.

Despite his parents’ love of board games, he’s not that into them. And he’s only now liking coloring – at least if he’s coloring dragons. He did seem to inherit a love of crafts, though.

Jack can read really well. Recently he’s read some 60-page books. We read three books every night before bed – one from school that he reads and two chapter books that I read to him.

Plush animals are probably the number one toy for Jack. He has a ton of them (most are cats or monsters). Several sleep with him at night. When we are choosing the order of books to read at bedtime, he usually selects a plush to make the choice for him.

Our (mostly alive) cat Wicket also sleeps with him.

Jack draws and draws and draws. He’s been drawing since he was 2 years old and was handed a magnedoodle. We have boxes of his drawings and I don’t know what the heck to do with them all! He even draws on his schoolwork!

He’s awesome and I love him to pieces (even when he’s acting like a little jerk).

Everything Is Against Him

It’s been a hard week. And it’s only Wednesday.

Monday and Tuesday Jack was late to school. This is sadly too common. He is soooooo slow to get anything done and any hurrying I try to do just stresses him out and delays him further. The school office doesn’t blink anymore when we come in late. They also don’t mark his tardies as excused, though.

The biggest issue we’ve been fighting with is clothing. Monday he had trouble with pockets being too bulky. Tuesday it was that the waist of the pants was too loose. Sometimes things don’t feel good on his skin. Or they feel damp (when they are probably just cold). This pair of underwear goes up too high, or this shirt isn’t the one he feels like wearing today.

Today it was all about socks. They bunch up. They don’t fit right. They feel weird when he puts his shoes on. The heel is in the wrong spot. The seam bothers his toes.

His shoes are a whole other story. He wears one pair and the soles are badly worn down. I’ve bought two pairs in the last two weeks and he can’t stand to wear either of them because they are too tight or too uncomfortable. Even though he tried them on at the store and said they fit!

Homework hasn’t been easy. Jack hates to be corrected. We ask him if he’s put forth his best effort and he says no…so then he has to keep trying. And then he says he’s tired. Or he storms off into his room and slams the door and hides because he’s frustrated about having to think. He did this several times last night. I try to get him to focus on doing what he knows first. We can worry about corrections later. But he stumbles over some of the math concepts and gets frustrated when he can’t grasp them quickly.

I don’t doubt he’s tired, honestly. He is difficult to drag out of bed in the mornings (at least, during the school week). He gets to bed much later than I would like because of how long it takes him to eat, and then the hour of waiting time before he can take his pills, and then the dawdling that happens during bed prep time. By the time I get him to bed my evening is gone, too. We’re all tired.

Time is a big problem. He eats slowly and runs out of time to play, which upsets him a lot. At school he hasn’t been finishing his lunch because he’s afraid of running out of time to play. Or sometimes another kid distracts him from eating.

Jack exclaims, “Everything is against me!” or “I never get to have fun!” Then he berates himself – “Ohhhh, why do I waste so much time?!” and smacks himself in the head.

We try to remind him that he has friends and family that aren’t against him. That clothes aren’t out to get him. That he gets to have fun at recess and he gets to watch Scooby Doo and work on various craft projects. We make deals (he’s been a fan of deals in the past) – if he finishes two pages of homework, we can build or color or craft together. We have reward charts for things he needs to focus on – finishing homework, being gentle with the cat, brushing his teeth without dawdling. Various things work for a day or two before they no longer seem to motivate him.

I don’t know how to help Jack. I don’t know how to help myself, either. I feel defeated and so very tired.

Somehow, we need relief.

Almost Spring

So, it’s February. Barely so – it’s closing in on March quickly! And I will mostly look back on the first two months of 2013 and not remember what the hell I did with my time.

But! Jack got glasses a week or so ago. We found out he is very farsighted and so now he has a pair of glasses with very thick lenses. It bummed me out a bit – another thing for him to have to deal with, and the glasses hide his gorgeous long eyelashes. But his vision shouldn’t worsen with age (this is a genetic thing and not cancer-related) and he can now read more easily and quickly! And this should mean less headaches for him, as well, which I know he’ll appreciate.

The adjustment to having glasses has gone surprisingly smoothly. Jack doesn’t normally handle transitions well, but with the glasses he tends to forget he is even wearing them and I have to remove them at bedtime. His classmates chattered a lot about the change when Jack showed up at school, but as far as I know there haven’t been any problems with teasing.

Jack’s teacher told me recently that he has caught up academically with his classmates! She has been very impressed by and proud of him! This was before he got glasses, so I’m sure that he will continue improving with the aid of being able to see properly. He recently read his first 40- and 50-page books, too!

I’m still a bit mystified by Jack’s social interactions. On any given day he’ll say he doesn’t have any friends or that no one wants to play with him. Yet walking through school and seeing all the kids who say hi to him tells a different story! He even gets hugs sometimes! It also seems that, from what we can interpret from the few details Jack gives us, it’s not that kids don’t want to play with him but that they don’t want to play what HE wants to play OR they don’t play it the way he wants them to. I’m not sure how to help him be more assertive with his needs (it’s taken a ton of work just to get him to tell us when he’s not feeling well – he doesn’t want to upset us!) and also to be less rigid. I’m hoping he’ll get it figured out on his own. :P

Physically Jack is doing fine. Maintenance continues as normal, although we did have to add Tums to his regimen on the weeks he takes steroids. A 6-year-old with heartburn is a pity (and kinda scary because all he knows is that his “chest hurts;” I already had the worry about when his stomach hurts – kidneys? liver? just constipation?). He’s also had either the same cold or four different colds since before Christmas. But his ANC is good and his exams have been fine so I try to focus on that. Plus, he is definitely growing! The kid needs new clothes and shoes again.

It had seemed we were making progress on the self-flagellation but yesterday Jack got really frustrated with himself for going through several pairs of socks before finding comfortable ones and slammed his forehead against the arm of the couch. He said he didn’t have time to draw that lesson (we were running late for school). And unfortunately he wasn’t feeling well enough to go to therapy on Wednesday since he’d had chemo the day before, so we’ll have to wait until March to address that again with his therapist. Maybe in the mean time I’ll coat the walls and hard furniture with bubble wrap!

So that’s what’s going on with my little ewok dude lately. It’s fairly tame stuff and for that I am grateful!

He Wants Money

While Jack has no concept of monetary worth and is a bit shaky on his math skills these days, he is still motivated by money. I discovered this a couple of years ago when we were working on potty training. Well, ‘potty training’ isn’t the right term really – he knew exactly what to do and didn’t need training, he just didn’t want to do it. Stickers, candy, etc. were not good enough incentives for him. The thing that finally worked was $$MONEY$$. Every time he used the toilet I gave him some coins to put in a clear bucket. At the time he responded with wide eyes and asked, “I can buy ANY toy I want???”

Sure, honey, just keep saving those nickels.

More recently we’ve been trying to help Jack with his memory. He tended to forget things before cancer came into the picture, and ‘chemo brain’ is certainly not helping his recall. He’s terrible at remembering kids’ names and can’t for the life of him remember what he did during the day. Half the time he’ll make up some story about monsters or aliens on the playground to cover up his shoddy memory.

It’s a good thing Forgetful Jones isn’t around on PBS anymore, otherwise he’d have that nickname like I did! Someday I’ll have to apologize to him for passing on this sad trait of mine (if I remember).

When Jack came home from his first day of school and actually told us all about it (first time ever!) we were super excited. We immediately decided to encourage this behavior. Thanks to their ready availability at the clinic, Jack is no longer interested in stickers in the least and he already gets chocolate following his regular doses of antibiotics…hence, we offered him money if he remembered the name of his projects partner at school the following day.

Upon hearing “Gabriel who is a boy” announced, Jack was handed a dollar. Yesterday he came home and told me about Toni, and also about a kid from Room 1 that he’s decided is his enemy (the kid tried to get Jack to say “underwear” in a knock knock joke – Jack is much too proper for those shenanigans). When David asked if maybe he wanted a treat, Jack said yes and drew a rectangle shape with his fingers to indicate he wanted a dollar. We cracked up and handed it over.

I’ve given Jack his first wallet so he can stash his cash. He’s up to $3 so far. I believe he plans to use his money to buy monster berries in his favorite iPad game Monster Pet Shop (which involves breeding, raising, and selling monster pets – we’re actually both addicted – be our FRIEND!). I would be encouraging him to save it for college but I think we might have an entrepreneur on our hands!

Just A Phase or Full On Mama’s Boy?

Yesterday I sat down and tried to write a post about Jack and what it’s been like since he’s turned six. I wrote a lot, actually, but it’s all very disjointed. I found it very difficult to describe Jack’s recent exploits without the cancer stuff. I honestly can’t say whether some things he does these days are just part of being six or caused by side effects of cancer and its treatment.

I decided to pare it down and just write about one that’s been troubling me lately. Perhaps I can get some insight from other parents with kids around this age as to whether this is a ‘being six’ thing or a ‘kid with cancer’ thing. And if y’all have ideas on how to handle it, I’m all ears!

Jack is seemingly obsessed with me doing things for him.

Whether it’s making his meals, deciding on an outfit for the day, or playing Scooby Doo with him…he wants me, and only me, to do it. In addition, he demands that I LOOK!LOOK!LOOK! at particular scenes of shows we’ve seen a bunch of times. I have to acknowledge every robot he makes in his iPad game and every time he feeds one of his monsters in his other games…

At first I thought we just needed to spend more time together. He’s been at his dad’s more this year, so perhaps he was just missing me? But I’ve taken fairly large chunks of time off lately to be with him and that has not seemed to lesson his need one bit.

I asked him why he needs me to do things for him. Why can’t David fix dinner? Why can’t someone else read even one of the three books we read at bedtime each night? Why me and only me and all the time ME?

“Well, mom, it’s just that I’m attracted to you.”

Um, okay. I told him he should probably use different words, but alright. I guess he has a need he can’t explain, either.

I’ve thrown around various theories from him needing extra comfort since he got sick or because of the move or maybe it’s a phase…but it has been going on for months and months and hasn’t let up. It’s nice to feel wanted and, gosh, he must think I’m pretty great, but I would really prefer it if he’d led David take care of him, too.

I miss my fearless, secure, independent little dude. I hope he comes back.

Go Team!

It’s Friday and I’ve pretty much poured my brain into the posts of earlier this week (please read them!). So, I thought I would bring you hilarity to start off your weekend. A picture of ME, Crystal, EWOKMAMA, as a cheerleader.

Now, I only lasted one season – way back in 1993 (I’m SORRY if that makes you feel old). I wouldn’t go along with the “OMG you guys! Let’s try this super cute thing OMG!” because, uh, yeah. No. I’mma be over here, doing what I was told to do. And I’m going to do a damned good job of it.

Except, well, I was afraid of heights, so, despite my meager 95 lbs, there was no way I was going to be a “flyer.” I wasn’t big enough to be the base of the pyramid, either, so…yeah. I was not cut out for cheerleading. Not at all. But I was fucking cute as all get out!

Go team!

Birthday Shark Clubbing and UFOs

We had Jack’s birthday party on Saturday. I started baking his cake Friday night (it took WAY longer than it should have). Saturday morning I started on the frosting while David strung up the piñata and handed Jack a golf putter.

Now, word to the wise – it takes a WHILE for a scrawny six year old to get a piñata open. There is a reason these things are supposed to have a billion kids whacking at it! Jack had to take a break at one point because he got so tired from swinging the putter. While he took a break, David tampered with the shark a bit so that when Jack came back it wouldn’t be long before it starting spewing its insides.

shark pinata

Jack clubbing the shark

Jack loved it. He picked each thing up as it flew out of the piñata to marvel at it. This is another reason it took forever to get through that thing! I had stuffed all kinds of random stuff inside the night before, including leftover fortune cookies and fruit snacks. When the owl keychain I loaded in there flew out, Jack brought it to me immediately and said, “Mom, I think you should have this because you really like owls.” Aww!

I had some major troubles with Jack’s cake – everything was taking longer than it was supposed to, the caramel for the icing seized up the first time, and my buttercream freaked out and tried to turn into cottage cheese at one point. Luckily, I was able to fix it and and slap the UFO cake together. I’m pretty proud of how it came out and everyone else thought it was delicious! I added some monster cupcakes for the kiddies.

UFO Cake
monster cupcakes

I don’t think Jack even noticed that he didn’t have a big party with all of his friends there – he seems perfectly happy with the celebration and I think it was a great birthday party regardless of the size. Yay!

make a wish

Jack’s wish is to bring a dragon to life.

Six Years Ago Today

Jack’s birth was not an easy one. At 41.5 weeks, I was induced and it took 30 hours of contractions before real labor kicked in. Once there, it was another 9.5 hours until the kid was born. Until the very end, he refused to drop and hung out in my rib cage. He also did flips the entire time, so when he was finally born – purple – his umbilical cord was wrapped around his body three times. You can see his still-mottled coloring in this picture, which was taken after they gave him oxygen:

Can you believe that hair? That kid has the craziest amount of hair I’ve ever seen. He was born with sideburns! Even now, after six months of chemo, he’s hanging on to a bunch of hair still! He’s totally my fuzzy little ewok. (He was born up where they filmed the ewok scenes, you know!)

Jack was so aware right from the beginning. He often had a wrinkled forehead and looked so serious. He stared at me with those big, serious eyes early on:

Jack at 5 days old

He smiled and babbled early, too – he was *JACK* right from the beginning. It was easy to see that this little guy had a big personality just waiting to burst out.

Jack smiles at 5 weeks old

We had so many nicknames for him. Jackie. Jackazoid. Jackonaut. Jackington. Jackaroo. Bubba. Mister. They all fit, even today as he dresses up constantly and pretends to be a super hero or an alien or a sea creature.

I can’t believe he’s six. And yet, I feel like my life didn’t exist before he came along. He changed the state of things, that’s for sure. It’s because of him I’ve come so far in therapy. He’s made my life exponentially better and I don’t know what I would do without him.

Happy birthday, sweet boy!

***

You might also like