close
close
about me
archives
links
subscribe (rss)
 
mamapop
the advice smackdown
twitter
flickr

« February 2011 | Main | April 2011 »

March 07, 2011

Selective Hearing

This is the last post in the More Birthdays campaign, sponsored by the American Cancer Society.

I imagine it's pretty obvious by now that I didn't really have a plan or theme for this "series," but just sat down each time and started typing and hoped that I'd stumble upon a point or insight somewhere along the way.

Honestly, most of the time I just crossed my fingers that I wouldn't get an ominous phone call in between the draft stage and the publish button. 

I guess, as usual, the best place to start is with the dry, basic facts:

The doctors told my dad it was time to stop the chemotherapy. He opted...not to take that advice, and got his oncologist to concede that as long as he kept his blood count numbers just above a bargain-basement level, he could probably continue with chemo. 

He heard: There's still hope.

The cancer has spread to his lymph nodes. But not as much as the doctors thought. His spleen is enlarged. But not as enlarged as it could be. 

Again, he heard: Hope.

After multiple cancellations, at least one infection, some antibiotics and I don't even know how many transfusions, he's back at chemo today for the first time in a very long month, right now.

I wish I could hear hope too. I really do. In fact, I wish I could hear anything other than the little voice in my head nattering on about oh great, he'll have another bad reaction and another fever and another trip to the ER and another transfusion that's like tossing a wine cork at a collapsing dam and none of this is doing anything anyway but my God, he's so stubborn.

I don't like that voice. That voice makes me feel like a bad person, a bad daughter.

I wish I could hear hope.

But I'm glad my father hears it.

I hope everybody hears it too.

Dad-amy-1978

Posted at 02:33 PM in ACS, family, fuck cancer | Permalink | Comments (36)

The Red Drank Diaries

7:43 am. Ezra appears at the side of my bed, just at eye level. "MOMMY! WAKE UP!"

7:44 am. When I fail to WAKE UP in an adequately enthusiastic fashion, he beans me in the head with a small rubber SPÖKA nightlight. "MOMMY! KITTY SAY WAKE UP!" 

7:45 am. I wake up. We bought two of those suckers at IKEA this weekend, and they make deceptively good weapons.

7:50 am. Both boys are in bed with me. Noah has brought along a ROTERA lantern that he's grown incredibly attached to and a blanket that is actually an Invibbability Cloak and is talking about Harry Potter, at least Harry Potter According To A Child Who Saw 20 Minutes Of The First Movie And Plays The LEGO Game Version On The Xbox And Thus Maybe Has Some Of His Facts Wrong. 

7:55 am. We all hide under the Invibbability Cloak from Lord Baltimort. Or a bear, depending on which kid is currently steering the narrative.

7:59 am. My brain joins the rest of my body in WAKE UP VILLE and I remember the bottle of awful sugary bright red liquid sitting in the fridge that I'm supposed to spend the next five minutes chugging for my glucose test.

8:00 am. Sitter arrives. I swap children for EASYDEX 50 Oral Glucose Tolerance Beverage, Fruit Punch Flavor.

8:01 am. DRINK.

8:02 am. Oh God, it's like medicinal Kool-Aid laced with reconstituted Pixie Stix.

8:03 am. DRINK.

8:03.38932730 am. I'm totally going to start an urban legend about someone mixing this stuff with Red Bull, then thinking she could fly off the roof, right before Satan appeared and told her to eat some Pop Rocks too.

8:04 am. DONE.

8:05 am. Brush teeth. Spend next four minutes spitting out bright pink saliva into sink.

8:09 am. Shower. Feel mostly kind of normal, surprisingly enou...

8:10 am. THERE IT IS, MOTHERFUCKERS.

8:11 am. SUGAR!!!!11!!!!!

8:15 am. I can see my heart beating in my chest.

8:20 am. The bone part of my skull feels itchy. 

8:30 am. WHERE ARE MY SHOES. 

8:33 am. WHO STOLE MY SHOES.

8:35 am. GOING TO MURDER WHOEVER TOOK MY SHOES WITH MY BARE HANDS.

8:36 am. *trips over shoes* 

8:37 am. Found them!

8:40 am. WHERE ARE MY CAR KEYS.

8:41 am. Phone rings. It's the OB office. Doctor was called to a delivery and needs to reschedule my appointment.

8:42 am. "Okay I understand but see the thing is I was supposed to have the glucose test today and I already drank the drink like 40 minutes ago and I can kind of see forever and it's full of stars and can someone please take my blood anyway before my heart stops beating or something and hey look I found my keys they were in my purse."

8:44 am. Am informed that only the receptionist is in the office. There's no one available to take my blood at that location and since I can't get to the other, farther-away office or get a referral to a lab within the next 15 minutes or so for accurate results, it's probably best if I just swing by later for another bottle of satan-sugar-water and try again on Wednesday morning. 

8:45 am. The kitchen countertop feels sooooooo nice on my temples, which are kind of maybe starting to throb.

8:50 am. I should probably make some coffee to counteract the whole. Thing. That happens. After I drink. The. Whattayacallit.

8:57 am. Do you know what's really heavy? Shoulder blades. Right? Lay off my back, you stupid bones.

8:59 am. I was supposed to get an ultrasound too. I'd probably be disappointed if someone hadn't come along and yanked my will to live and/or give a shit about anything out from under me about 11 minutes earlier. 

9:00 am. Zzzzzzzzzzzzzzzz.

9:06 am. "MOMMY! KITTY SAY WAKE UP."

*fin*

Posted at 01:17 PM in pregnancy | Permalink | Comments (53)

March 04, 2011

ADDition

Noah started swimming lessons this week. So did Ezra, but Noah's class kicked off first.

Jason took him, so I could stay home with Ezra and preserve his little toddler-sense of fairness and gloss over the fact that Noah gets to do EVERYTHING FUN with the help of some chocolate-chip cookies. 

Jason videotaped the session for me, though, so I could watch. We alternate karate nights too, so we've both gotten plenty of chances to watch that as well. 

But it took the video for me to really see. 

It was exactly what I've been seeing at karate, and what I've been seeing at home. What the babysitter has been reporting, what's between the lines of the teacher's notes home, and what I've been reporting every Thursday morning to his occupational therapist, even though I didn't really KNOW what I was reporting, other than, "help, we're struggling again, and I don't know what's going on this time, because the stuff that worked before isn't working anymore."

I went through our pantry and re-read ingredient lists, just to make sure I wasn't missing something. I tried re-instituting naptime, in case he was just plain worn out from the bump in his activity level. I tried forcing more outside time and making sure he was getting enough activity on the inbetween days. We set up an elaborate new visual schedule/sticker chart to target the more frustrating behaviors and tantrums and keep him on-task. We upped the sensory diet, brought out the sensory clothing, transition timers, anything to help center a kid who was flailing daily off his axis. We took away privileges and TV and sent him to time out and bed time. We explained. We begged. We threatened. We yelled. We Googled.

Then I saw the videotape and SNAP, CLICK, it all fell into place like a puzzle piece.  I think I know what the problem is. Was this always his problem? Instead of the SPD and PDD and dyspraxia and language disorders and whatever the hell else we've had slapped on various insurance forms over the past three years?

Or is this just...in addition to all that? 

***

We almost missed the bus yesterday. Noah was still dawdling distractedly over his sandwich at the table when I saw it pull up outside. I hollered and barked and grabbed his jacket and backpack and hustled him outside. I gave a half-smile and wave at the driver when the aide's head appeared over the front seat.

"NOAH'S NOT LISTENING." The volume and anger in her voice startled me. I stared at her and blinked.

"HE'S NOT LISTENING," she repeated, and then started listing his many grievous offences, the biggest of which seemed to be an inability to keep his hands off the various buttons and controls at the front of the bus while lining up to exit.

I stared at her some more. I blinked again. I had absolutely no idea what she expected me to do with this information. But holy crap, she was furious, and clearly waiting for me to...I still don't know? Yell at Noah in front of her? Apologize that she had to deal with the same things I do? Promise to drive him to school instead?

"Well," I finally stammered out. "He's...special needs? The stuff you're describing? The not listening? The off-in-his-own-world thing?  Impulse control? That's part of why he goes to PEP in the first place. That's why he's on this bus."

"HE NEEDS TO LISTEN ON THE BUS," she shouted again. The "or else" was implied, though again, I had no idea what she thought she was threatening, because I'm pretty sure "touching the radio buttons" is not a get-kicked-off-the-public-school-bus-level offense, unless he was touching them with like, knives or illegal fireworks. 

I wish I could report that I let her have it, that I raised my voice back and asked her what the hell she was doing in this particular job in the first place, if she was unable to control the all of SIX PRESCHOOLERS in her care for a 10-minute bus ride around the freaking corner without losing her temper like this over behavior that frankly, didn't even strike me as that atypical for a five-year-old little boy. 

"We're doing the best we can," I said quietly. 

I looked at Noah, sitting obliviously in the front seat. "Please be a good boy, buddy. You need to listen, okay?"

He propped his bookback up next to him. "Look Mommy, it's a cave!"

I wish I could report that I immediately went inside and picked up the phone and called the school, the special needs office, the bus depot, anybody.

I went inside. I sat down. I pulled out my phone and composed a couple angry messages on Twitter.

Then I emailed the person our OT told me to contact that morning about getting a new evaluation done. An email I planned to send anyway, but now seemed loaded with an extra heaping of defeat.

"We think Noah might have ADD," I typed. 

And then I put the phone down and burst into tears. 

***

It's not even the specific potential diagnosis that's upsetting. Well, it IS, to ME, because it's MY CHILD, and I think every parent is entitled to lose their shit momentarily whenever their perfect, precious baby is facing anything more serious than a hangnail. But I'm fully aware that in the large world of Bad Shit Your Child Could Have, Attention Deficit Disorder is pretty minor league. We've certainly had "worse" things on the table before, if you want to get gross and blunt with the Diagnosis Olympics. 

No, it's mostly the feeling that once again, OH MY GOD, we're being booted back to square one. I don't know much about ADD or ADHD, except that there's a big steaming load of controversy over whether it's a real thing or not, overdiagnosed (or diagnosed too early or too late) or not, to medicate or not. I know that untreated, it can make life really, really hard for people. Which, you know, is the exact opposite of what I want for my little boy. 

Once again, our mental marker for the day we can hope to put Noah on the bus without the giant knotty ball of worry and concern over whether we've made the right choices to get him through the school day has been pushed far, far back on the horizon. 

***

The next evaluation will be at least three days of extensive testing, and will measure everything from his attention span to his IQ to ruling out (or IN) a number of other possible learning disabilities or ongoing developmental problems. We could certainly still be pleasantly surprised, or completely blindsided, or it could simply confirm what we -- Jason, me, his OT, among other people -- already suspect.

I always thought the next time we went through this, it would be to obtain an official PDD-NOS diagnosis, one that wouldn't really MEAN anything too different, other than "Yeah, he's still all over the place, we dunno, but here's a fancy label to make sure the school district continues to do the right thing." If we had to go through this again, that is. 

The wonderful folks at The Stir offered to extend my contract into 2011 so I could keep writing the column on special-needs parenting, but after thinking it over, I turned them down. Yes, I was busy with Mamapop and plans for Moxiebird and AlphaMom and OH YEAH THIRD BABY ON THE WAY, but really, I turned them down because Noah was doing so well! I didn't have anything to write about, week after week! Coming up with topics was increasingly challenging, and every week the comments on my posts mostly just served to remind me that damn, we have it so easy compared to other families, and I really have no business cobbling together 500 words or so about All The Important Things I Know About This Very Important Topic.

That was around Christmas time. It's almost laughable, how quickly things cratered. Or more accurately, how quickly things were thrown into sharper focus. His speech is great. His social skills and his imagination are great. His sensory issues and fight-or-flight anxiety are incredibly improved. School behavior...well, that's still a challenge, but yes, we're FINALLY at a point where he can attend birthday parties and karate and swimming lessons without freaking out, without constantly being led back to the group, without having to beg him to try. He WANTS to learn karate and swimming. He really, truly wants to, so badly.

But.  

He's there, and...he can't. He can't pay attention. He can't hold focus. He can't follow directions, or even absorb them until they've been repeated three, four, even five times. He can't stand still. Despite crystal-clear instructions from the teachers, he either belatedly attempts to mimic what the rest of the class is doing or simply repeats whatever motion/stance/kick he did the last time in case that's what they were asking for again. It rarely is. 

Eh, I thought. He's five-and a-half. He's a boy. We know he's delayed. It's a big deal that he's even here in the first place. All that matters is that he's having fun. Just ignore the other kids and what they're doing. Just look how happy he is.

But then, almost every time, when he realizes that class is over and he's missed something important or got knocked out of a class-wide game first because he didn't understand the rules...he cries. He SOBS. He's frustrated. He's heartbroken.

"I didn't win. I didn't do a good job. Why can't I not ever be the one who wins, Mom?"

***

As I let myself indulge in a good ugly cry yesterday, letting the Bus Disaster open up the floodgates of weeks of stress and worry and lost tempers and Noah and my dad and pregnancy hormones, I felt little hands on mine, pulling them away from my face.

"Oh no, Mommy sad!" Ezra said. "Mommy cwying!"

He brought me, in turn, the remains of his granola bar, then a plastic egg, then a receipt he found on the floor. I went from a shaky smile to bust-a-gut laughing in no time.

"All better?" he asked.

"Not yet," I told him. "But it will be." 

Posted at 12:26 PM in Noah | Permalink

March 02, 2011

Show Me Your Teeth

I took the boys to the dentist this morning. Because that's what you do, right? You have children. You take them to the dentist. 

And then afterwards you come home and lie down in bed and stare at the ceiling, utterly exhausted, brutally aware of every stressed-out muscle and amped-up nerve running through your core. All because you took your children to the dentist. 

Or maybe that's just me.

Everybody's teeth are just fine, though I have passed on BOTH of my own mouth weirdness issues to the boys -- one issue for each kid. Ezra's got the overbite, Noah's got the insanely crowded mouth with teeth wedged up next to each *likethis.* Perhaps the new baby will get my special trick of growing adult teeth underneath my gums, completely sideways.

YOU'RE WELCOME, KIDS.

But still. I am beat. We were late! There were forms! Then more forms! A misplaced insurance card! Wrangling in the waiting room! All this AND MORE, before we even got into the exam room where there was honest-to-God potential for BITING.

Ezra was a dream, as usual, once we acquiesced to his raging dislike of the paper-towel bib, anyway. He chose a dinosaur finger puppet and a Spiderman tattoo as a prize and that was that. 

Taking a kid like Noah to the dentist -- a kid who is still generally flip-outty sensitive about his mouth, and wary of the world at large, particularly parts of the world involving adults asking him to do things he does not want to do -- is a total crapshoot. Will he cooperate? Refuse to open his mouth? Cry? Panic? Knock over several thousand dollars worth of medical equipment on his way over to the windowsill in a desperate bid to escape? 

(For the record, yes, we take them to a pediatric dentist office that regularly sees special-needs kids. So they're used to it. Probably more so than I am, because OHMYGODIHATEIT.)

All things considered, he did pretty good today. I had to hold his body sideways and pry his fingers off the doorframe at one point, and then he figured out how to work the little water sprayer instrument and VERY NEARLY ALMOST doused the dentist's computer with it, and yes, he cried, and begged for us to stop touching him and and to just plain stop stop stop. He was utterly convinced that someone was going to give him a shot and no amount of reassurance from anyone in the room would change his mind about all of us secretly packing giant needles in our pockets, waiting until he let his guard down before poking at him like a soft, baby-skinned pincushion. 

But he did it. We did it. Teeth cleaned, polished, flossed and flouride...ed. He picked an Iron Man tattoo.

I came home and picked out an entire box of Girl Scout cookies, because compared to my kids, I am a giant-ass wuss.

Ezra-little-chef1

Ezra-little-chef2

Ezra-little-chef3

Absolutely unrelated to anything else in this post. 

Posted at 02:14 PM in Ezra, Noah, SPD | Permalink | Comments (48)

March 01, 2011

26 Weeks

The theme song for weeks 25 and 26 of this pregnancy have been Lady Gaga's Poker Face, which I oh-so-super-cleverly renamed and reworked as Pizza Face:

Can't clear my, can't clear my,

No I can't clear up my pizza face.

(I have zits like no one's business.)

I am a regular goddamned Weird Al, right? I mean, I could be, once I figure out more lyrics than just those three lines. I sort-of came up with a verse about burritos and Indian food where I was able to swap "fart" for "heart" but then I stopped. Because of the DIGNITY. WHICH I TOTALLY STILL HAVE.

I also do totally have gas. And a bladder that wakes me up at least two times a night. And a slutbitch of a sciatic nerve. 

After a breakneck buying spree attack of the baby shopping, I'm feeling much more prepared than I was even just a week ago. Realizing that you somehow own 14 designer swaddling blankets will do the trick, apparently. As does discovering an entire forgotten stash of baby gifts you bought for friends' newborns but never managed to wrap up and send, and since said newborns are now toddlers, said gifts are ALL YOURS NOW YAY.

(Thus: the 14 designer swaddling blankets. Which means I am now all but guaranteed to give birth to a baby who hates, hates, hates being swaddled. Either way, I'm totes prepared!)

Oh, everything is still just piled up on the floor. But dammit, those are some well-stocked piles. I can rest easy with those piles. I could rest easy ON those piles, what with all the blankets and fluffy diapers in there. 

Lastly, the obligatory this:

Photo (31)

Can't see my, can't see my,

No you can't see my pizza face.

(I will crop and you will like it.)

Posted at 02:46 PM in pregnancy | Permalink | Comments (39)

« Previous

Momblogger_badge

Top-50-twitter-moms

2007 weblog award winner: best parenting blog

BlogWithIntegrity.com

© Copyright 2003-2011 amalah dot com ALL RIGHTS RESERVED
Site design by Sean Slinsky, powered by Typepad
and also probably hamsters, tubes and duct tape