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.

My Boy, Since Cancer

Since Jack was diagnosed with cancer there have been both sweeping changes and little changes in our life. Some are harder to describe than others. Aspects of his personality that were there before might now come out in a more noticeable way, or they might be more hidden, protected. Jack is still himself, of course, but the version of him we are living with now isn’t as steady or balanced. I wonder how much of him is changing permanently because of this experience.

I’m not sure I can still describe him as a “happy-go-lucky” kid, for instance.

His mood can change on a dime, and he is VERY sensitive. He is quick to cry, quick to anger, and quick to feel defeated. No amount of good-natured teasing is allowed. A simple behavior correction or disagreeing statement will send him running to his bedroom with an, “I’m going away from you now!” If he gets angry, he’ll growl and even hit himself in the head.

Jack is great at interacting with adults now. Often it seems he prefers it; after all, adults behave less erratically than kids and are more likely to give him what he wants. Other kids require more negotiation, more effort to communicate, and a jumble of emotions, including frustration. Being isolated from social situations like school and daycare for nine months has led to Jack avoiding socializing with kids if he can help it. It even takes cajoling to get him to attend a birthday party.

With that said, it can be difficult to interact with Jack due to his lack of attention span. He has so little focus. Questions must be repeated several times, and he needs constant reminders – within seconds of each other! – to get him to do anything at all. He is distractable, flighty, and more forgetful than ever.

His skills with art are as great as ever, but any math he knew from Kindergarten has eroded (although we’re hoping this can be regained fairly quickly). His interest in reading has lessened, likely due to headaches and side effects from chemo. Since he is easily frustrated, he typically doesn’t stick with new things long enough to improve at them.

He’s been a fairly thin kid since he reached the toddler stage, but now he has ZERO muscle definition. He is skinny as can be – the baby fat is gone, too. His eyes are a little sunken with shadows, and his skin is so, so dry all the time. Despite continuing to go on hiking adventures with his dad, he is quickly winded with any activity – he no longer runs everywhere or challenges us to race to the door.

He eats like a bird (since the steroids were left behind) and his diet is limited. The full array of things he will eat includes: carrots, cherry tomatoes, cheese, salami, rice, grapes, apples, edamame, chocolate, waffles, pretzels, seaweed and milk. No more chicken. No more fish. No more peanut butter and jelly. Definitely no yogurt! He’s even less likely than he was before to try new things, too.

It’s not all bad, and things could definitely be worse. Things take longer, are more frustrating or serious, more worrisome. He has not been unaffected by all that cancer has brought in the last nine months.

Still, he’s HERE and he can still smile. He’s growing, he’s still learning, he’s still a spectacular kid. I can hold him and we can laugh and giggle together. He’s still my sweet, Scooby-Doo-loving, alien-impersonating, imaginative and fierce little boy.

 

He’s still Jack.

Cinnamon and Cream

I’ve been spending more time cuddling with Jack lately. Sometimes he comes scratching at our door in the morning and asks to crawl into bed and get warm under the covers. At other times we are on the couch under a blanket while watching his shows (usually Ben 10 or Scooby Doo). Most recently we’ve been snuggling up in his bed while I read Harry Potter and the Chamber of Secrets to him before bed. I read until his eyelids droop, then I turn out the light and we have our goodnight snuggle.

Jack has always had gorgeous skin. It’s smooth and, except for a mole by the bridge of his nose and a small scar under his eye where he scratched himself as a baby, a flawless shade of ivory. He has the same beautiful skin as my dad and sister.

I always look at him out of the corner of my eye while we read or snuggle. I examine the curve of his long, full lashes and the slight cleft in his chin. I wonder if the cleft will stay just barely noticeable as he ages. My gaze slides over the childish curve of his cheek and the cheekbones that look so like mine.

Lately freckles are starting to dot his nose and cheeks, as well. They are tiny, dainty, like a dusting of cinnamon on top of cream.

I wish I could capture it in a picture, but there is no way Jack would allow it. I mentioned his freckles to him recently and he scowled at me and declared that he didn’t have freckles! I told him that I think freckles are beautiful, but that I understand – I was once young, too, and hated my freckles.

I hope I get a long, long time to appreciate those freckles. I hope he grows to appreciate them, too.

Some Joy

Considering the last time I mentioned a house, we were going to wait to look for House #5, this may be surprising to hear, but we’re in escrow on House #6. Mmhmm.

Number 5 came and went and then came 6. This lovely place is down the street from what we’re calling Mold House. It’s also a million times more awesome and the BEST house we’ve seen (in about 60 total). We were more than a little surprised when our offer was accepted. We weren’t surprised at all when the inspection was fabulous. THEN…then the appraisal came back at a bizarrely low amount and the whole thing nearly fell apart with our financing. We challenged the appraisal and after waiting on pins and needles for three and a half days, we finally heard back – the appraisal was revised. The house was once again in our reach if the sellers could meet us half way on bridging the gap in financing. And they DID! Yay!

We’re not out of the woods yet. We need the bank to approve our new financing. But we’re damned close! We should know for sure that everything is a go next week. We assume nothing until then!

Amidst this house drama, Jack lost his first tooth – one on the bottom. For some reason this makes us absurdly happy. I guess because it’s a sign he’s growing up even while fighting cancer. He’s living! And he’s damned cute with a missing tooth. He has a slight lisp and has trouble with S sounds at the moment. It’s adorable.

I also had a wonderful Mother’s Day! David and Jack made me breakfast in bed and then we went out to have fondue for lunch. I loved the pampering. We had our celebration a bit early so that Jack could have fun with his dad the next weekend while David and I took off for Sonoma. I got an incentive trip through a contact at work – two nights in a resort hotel plus wine tasting, dinner, and brunch – all free. We sprung for massages, too. I felt like I got two Mother’s Days!

Life isn’t all bad right now. I’m glad I get some relief, even if it’s hard won!

Where I’m Complainy

Jack is being a total pill lately. I’m not sure if he has been saving it all up for when things with his cancer treatment weren’t so intense or what but it sucks! Sometimes it’s a matter of snapping at us or demanding that we not say certain things (tonight it was “googly eyes”). Other times he won’t pick up after himself and defaults to “my legs hurt.” It makes it difficult to tell when he is really not feeling well and when he is just trying to get out of something!

This is weird territory for us. I know many of the medical professionals we’ve seen have mentioned to me that discipline should still be in Jack’s life but, oy. Who has energy for discipline on top of all the cancer stuff? And how do I even tell if he’s just being a little jerk or really not feeling well? One minute he’ll dash into his room and the next he is crawling on his knees to the bathroom.

Lord knows I’m not at my best, either. Fatigue has more than caught up with me, it seems. I’ve taken more than my fair share of naps lately. Hopefully I will ‘catch up’ soon.

I have one more complaint before closing out this sorry post. ๐Ÿ˜› It’s become much harder to share the CaringBridge site with Jack’s dad. Aside from it seeming that he has more and more been using the site as his personal blog instead of Jack’s, having that much insight into what goes on when Jack’s at his house is driving me bonkers. I worry constantly that Jack does too much over there and Jack’s recent attitude problems haven’t helped relieve that fear…especially since Jack has been spending more time there since he’s not in school and David is back at work. I have to keep reminding myself that I can’t entirely protect Jack from his dad’s shenanigans – I can only teach him how to speak up for himself – and becoming a stay-at-home mom is not the answer (although it sounds more appealing on the days when Jack isn’t being a jerk to me…).

Alright, there is my bitch session. Time to put the kiddo to bed!