Ways Cancer Doesn’t Suck: Uncles Edition

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My dad has two excellent brothers who married two interesting women. My dad is also, incidentally, excellent and my mother interesting so I’d say my grandparents did a pretty bang-up job. I also have pretty awesome cousins. In my mind, they have no faults but I suppose that’s what happens when you’ve only ever seen them a handful of times. Which is, I suppose, to say that my dad and his brothers aren’t particularly close.

I’m not sure my California uncle has ever visited my father (although the opposite has occurred) but if I lived in Monterey, I certainly would be happy to have visitors come to me as well. The glioblastoma has changed all sorts of things and so it is that my uncle has come to visit. My mother invited my other uncle to come at the same time. I don’t know why since her house is teensy and she has a sum total of 4 places to sit. She did it to my sisters, too. I think she wants to inflict family reunions on people when, in reality, everyone just wants my dad to themselves for awhile.

And so there we were, grilling on the porch, one uncle knocking back martinis as quickly as he is able and the other being felled by narcolepsy mid-chicken-flip. If you have never seen this in action, imagine someone just crumpling to the floor without warning. Everyone in my family just goes on as normal, which is both odd and comforting (although, if you’re my wife, just as shocking as some of the other ridiculous things that happen in this family).

It wouldn’t have happened if not for the cancer and I really like my uncles so it’s a silver lining in a whole mess of awfulness. Also, my dad’s birthday is today so, while not a silver lining, it’s pretty awesome that he got to see 70 after all.

 

 

 

 

Books for 5 year olds, part 2

This is one of those posts very much about five-year-olds, fair warning!

So, we’ve taken on some books this month with varying success (list here). Zita the Space Girl was a tremendous hit as was Ozma of Oz. Both are parts of series, which is nice. Both are also graphic novels. That worries me a bit with reading comprehension but she has BANG (every fifth Zita page) and CREE CREE CREE (winding Tik Tok the robot) and KUT-KUT-KA-DAW-KUT (Billina, the chicken) down pat. I’m not giving her enough credit here. She’s reading, really reading which is a relief since many Montessori educated kids trail behind a bit for a few months when they enter public first grade. I just don’t think she can read much at once and get it which I suppose is normal for her age. So CREE CREE CREE can’t be the sum total of her evening reading experience, even if it is super cute to see her apply it in robot situations outside of reading time.

The Boxcar Children and Choose Your Own Adventure: Return to Atlantis were a little old for her or a little less interesting, hard to say. She did manage to survive an entire Choose Your Own Adventure thread on her first try which is pretty remarkable if you have any experience with them. I think we’ll come back to the Boxcar Children later, or she can come back to them on her own. At least, assuming she isn’t buried in a graphic novel the rest of her life.

We also gave Inky the Indigo Fairy a go (part of the Rainbow Fairy series). It had only line drawings on every other page but the subject matter is near and dear to RR’s heart so it was a hit. I know she adores fairies (almost as much as princesses) but I had forgotten how utterly passionate she is about the color indigo and its placement in the spectrum. She has loved The Rainbow Goblins since she was small and, if you start talking rainbows, you had better be correct on indigo and violet lest you get a lecture on science.

The Princess in Black and the Hungry Bunny Horde is up next because, come on, that title.

 

Meltdown in 3…2…1…

For an entire week RR’s behavior has been spinning into chaos. She’s screaming at things that haven’t bothered her before (bugs), she’s screaming even when we tell her to stop (at the dog), she’s ignoring us when we ask her to do something (help, walk, shoes, stop screaming already for pete’s sake), she’s throwing an almost tantrum at bedtime when we stop reading (and physically grabbing at the book), she’s kicking and pouting and generally being an asshole.

As she says about anyone else behaving this way, she’s “mist-understood”.

Whereas on Friday I was wondering what got into her and how illegal it is to lock her out, I think the reasons are starting to surface. She went to visit her new camp yesterday, the first time she won’t be staying at her regular school for camp. On Tuesday, she is headed to her new school for a day-long visit, part of what they do with all incoming students. On Friday, her school holds an international luncheon which is a big event for the kids. They rehearse songs in many languages and have a family feast afterward. It’s the traditional indicator that school is almost over and it’s downhill from here.

Whether it’s  a symptom or is part of the cause, she had several accidents last week. On the bright side, I’ve noticed she’s actually dancing around and crossing her legs when she has to go. She’s never shown any signs like this before so I’m hoping we’re turning a corner. It’s stressful for me knowing that she’s going into a new environment with this issue and I worry that she won’t fit in or will be asked to leave. I know that’s unlikely (at least at the new school) but it’s keeping me up at night. Still, we remain neutral when an accident happens, ask her to change, and let her take responsibility for clean-up. It’s just the norm.

Last night she burst into tears at bedtime and wept about how she will miss her current teachers. My heart breaks for her (and for Debra and me too – this isn’t easy!). I think it’s a testament to our parenting that she was looking for solutions even as she cried, wondering if we might invite her teachers over for dinner.

I don’t know how to make this easier. We are giving her time to warm up to new situations before they happen since we’ve long since learned that she needs that attention to transitions. She’s visiting the new places she will be and she’s doing it with optimistic anticipation, if not outright enthusiasm. We let her take the lead and try not to push when it comes to meeting new people. Yesterday at camp, she tried things she hadn’t mastered before, like a short rock wall and a seated scooter. She also sunk down to draw with chalk at the first opportunity, relief practically oozing out of her. I don’t know what the new school will hold tomorrow since we won’t be by her side. That’s a good thing. At least until she comes home transformed into a terror.

I hadn’t even noticed how overwhelming it all must be. And now I feel bad for wanting to lock her out. A little. Let’s hope this isn’t a pattern until school starts in September and that there’s at least a little reprieve after camp gets into full swing.

RR Camp.JPG

 

 

 

 

Xanax Bought Me These Pants

I am the worst at clothes shopping. My wife referred to me (not at all lovingly) as quasimodo on Sunday.

As in: You still look like quasimodo in the mirror with one shoulder hiked up and a grimace.

She’s right though, even when I buy clothes online and try them on in my mirrorless bedroom, I do some sort of weird clothing-related hunching maneuver that is likely a physical manifestation of the way I feel inside when I try on clothes.

I have never in my life put something on and thought, yes. yes this fits like a glove. I am so excited to wear this. I’ve had clothing that fits beautifully standing up but which turns into a shambles sitting down. I’d had things look terrific from behind and a monstrosity in the front. I’ve had an enormous number of Clown Pants and Strangulation Shirts. You see, my shoulders are broad, my arms are assertive, and I have a nice rack (all the better to carry my problems with, and heft my child, and carry bulky things, and shrug off disasters) which makes many, many shirts ride up around my neck while simultaneously gripping my upper arms for dear life. I also have my grandmother’s belly which is to say I am perfectly normal until you sink below the belly button and then holy fuck what is that even and then normal again. I remember looking at the smooth, sudden roundness of her belly as a child and wondering how on earth that happened while leaving her perfectly average everywhere else. This ensures that dress pants that fit my belly often tent out like I’m a circus clown in a hula hoop and suspenders.

I’m hot stuff, you guys.

Now, I could go on about how I’ve spent the last year miserably under compensated for a promotion, which is to say not compensated at all (and I have lots to say about that), but I’ll stick with the fact that I can’t afford new pants, or nice pants that won’t fade, and I desperately need them because jesus, having a dad with cancer and a mother who has a husband with cancer has really done a number on my eating habits (pretty much all cake). I’ve been wearing two pairs of pants – one faded twill and one pair of jeans – for the last eight weeks. My clothing in no ways says, hey I’m a Director of Important Shit. It more says, hey, I work here, maybe, if work means come here every day and sit in that corner office hoping you won’t look at my pants.

It’s not good when you find yourself taking a day off every other week so that you only have to wear each pair twice. On the odd weeks, I sub in a questionable dress and skirt, neither of which I have seasonally appropriate shoes for. I have also taken to canceling meetings or showing up early to sit down first so that people don’t notice my pants problem.

And so, on Sunday, my wife announced we were buying new pants. There was a lot of moaning and grousing and general whining, all of which sounded generally like but nothing ever fits! I’m always BETWEEN and remember the Clown Pants?! But because I’m a big girl, I took a newly-acquired-because-I-am-not-handling-this xanex and you know what? I didn’t cry. I even found three things that mostly fit. At the first store.

This has never happened. There were no casualties. And even though my wife still called me quasimodo (thanks for that). I didn’t even try to hide or hold my laptop in front of me when my boss walked past today. Progress and pants, brought to you by anti-anxiety medication. I’ll take it. Literally.

 

“I don’t want to go to the doctor”

What is it that inspires fear of doctors? Why is there an actual thing called White-Coat Syndrome? Is it the vaccinations we have tucked in our memories somewhere? Even if that’s it, it seems that at my advanced age I should not react with heart-pounding anxiety when this happens:
Petite doctor enters the scene toting her doctor’s bag and brandishing a clipboard: “Mama, would you like some doctoring?”
Me, distracted, towel in hand: “No baby, I’m off to take a shower. Go doctor mama.”
Off she trots.
Post-shower, towel in hand, the door bursts open and a little voice pipes sternly through the steam: “Mama, after this, doctoring.”
Me, gripping the door for white-knocked support, heart leaping out of my chest: “Uh, okay?”
Come on man.
Needless to say, I don’t bring RR to the doctor with me. However, upon being informed that Dr. Lily was working on setting up an appointment with a specialist for her toe-walking, RR prompted planted her heels on the ground and has endeavored to keep them there ever since. She claims the nightly stretching we’ve been doing with her calves is helping and she’s not 100% consistent but I’d say that about half the time when I look over at her she is making a concentrated effort to use her entire foot.
All because we casually mentioned the doctor. Poor kid.

Grounding Our Fairy

RR has a lot of things going for her. She’s everyone’s friend, she charms adults, she got a fair shake in the genetic lottery, she’s strong and fast and coordinated, she reads and writes, she’s funny, really funny, she’s thoughtful and kind, she draws like an artist.

She still isn’t fully potty trained. She walks on her toes.

So far we’ve gotten by on the doctors’ assurances that:
1) There are no sensory issues.
2) Many kids struggle with toilet training through 5.
3) Her toe walking will abate.

Our wonderful doctor once wrote:
“Given how utterly fabulous, active, creative and intelligent RR is I do not believe that her tippytoeness is indicative of anything other than her wings not being fully developed yet. Fairy wings don’t typically develop fully until the age of 7, and she is just compensating because she is ready to fly NOW.  I would only pay attention if you see her leave the ground, and then only to make sure she doesn’t take flight before she’s mastered it fully and can do so safely.”

You guys. Do you not just love her?

But in a visit today we talked about the two issues combined and tried to zero in on what might be causing them and whether they are related. She thought that a visit to a developmental pediatrician might shed some light. Debra and I have been cautiously watching the (lack of) development in these areas and with a new camp and new school coming, I’d like to make sure we’re doing everything we can to ensure her body supports her development rather than hinders it. Still though. I hoped it wouldn’t come to this point.

It’s unlikely we’ll get in quickly so there’s no point in worrying now. I’m hopeful that they can help bring her back to earth and more hopeful that another doctor will have a breakthrough suggestion on eliminating accidents. And, of course, that nothing else needs attention.

RR

A Different Sort of Grieving

My dad had another MRI yesterday and has his regular check-in with the doctor this afternoon. In black and white that looks so much less ominous than it feels.

I spend a lot of time crying when no one is looking. Everyone in my family is outwardly (and probably inwardly) managing this so differently that I feel as though I’m grieving five different ways all at once. We’re all grieving for loss, yes, even though it feels like we technically shouldn’t be grieving yet because we haven’t had The Loss.

I see my mother flying like a trapped bird into every wall and window except the open door right in front of her. I see my sister brandishing her essential oils and conspiracy theories. I see my other sister quivering into immobility. I see my dad disintegrating. I see my wife on eggshells, navigating me and the terrible reminder of her own losses. I don’t know how to manage it all.

And it isn’t stopping. It’s only magnifying. My scatter-brained mother forgot to refill my father’s chemo a week ago prompting her to identify a dozen ways in which he was “better.” One sister surged forward proclaiming that obviously there’s another solution to this cancer besides chemo. The other sister tolled the bell of doom, “doesn’t everyone think dad’s just tapping out?”

Maybe. Maybe he made a decision. It wouldn’t be the first time he and my mom have decided to wait on some big news in order to “protect you girls.” I haven’t seen any real improvements from Cancer Dad to Regular Dad. His balance is still shaky, his jokes make no sense, he’s slow as molasses, he doesn’t talk much, he fumbles. It hurts so, so much.

It’s not a competition to see who’s handling it better but I wish we were all handling it differently. I wish we weren’t handling it at all.

 

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