Ives, one of the cutest of our neighbors. I mean seriously.
But before I got up, before I even reached for the camera, R jumped up. “She’s too cute, Mom. I gotta get a picture of this.” And then he ran inside for his ipod.
So we shot her together. I couldn’t even begin to contain my grin – look at how sweet those boys are.
Life is so different for these kids, you know?
My fav shot. God, she’s precious.
xo,
S
When Mike and I first started dating, he had all of these weird “rules”.
He wouldn’t hold hands…..
….he was anti-snuggle…
…and then at some point, I don’t really remember when, all of that nonsense stopped.
I was reminded of that recently. And now I just think oh, boys.
We are so good for you.
I reminded Mike of his old rules and the man actually blushed. “Babe, I’m so sorry. God I was an idiot.”
(yup)
ps. Jayme and Soph – we had SO much fun with you in NY. Loved, loved, loved seeing you both.
Mike and I have been working a on our photography this year. Here are some of my favorite shots from 2013 (one was taken with an iPhone – can you guess?)
“Mum? What Hero Factree guy you wike? You wike Strwinger? You wike Stohmer? You wike Beez?”
Me: Pax, go to sleep.
[silence]
“Mum? If you wan’ pway Hero Factree wuf me you can! You can be Beez, you can be Strwinger, you can be Stor–”
Me: Honey, it’s bedtime. We can play in the morning.
“But who you be, Mom? Beez is girl wike you, wight? She not pee-pee standing up. Onlee Daddy an’ Waines pee standing up WIKE ME!!”
Me: Um, that’s right. But Pax, we are in bed. You are supposed to be sleeping. Now close your eyes an–
“MOM! Why you talk so WYIET? I talk WOWD.”
[I crack up. Dammit! He got me.]
Me: Ok, Pax. I’m talking quietly because it’s sleepytime. No more talking. Roll over – I’ll rub your back a little bit.
He launches himself at me, climbing into my arms. “But MOM. I need nuggle you! I’m sad petause it not morning-time and Daddy said no-no Hewo Factree and YOU MY MOM. You my mom.”
Me: I am your mom, my love. And you are my baby.
Pax cuddles in closer. “Yes. You my mom. You my mom….you…my…mom.”
He has always done this. This…claiming me. Claiming me as his mother. Even when he was a tiny baby. And for Pax, life really comes down to that one simple fact: I’m his mom. So when the nanny comes: “I not want her petause you my mom.” When we’re going somewhere: “You carry me? You carry me petause you my mom?” When snuggling on the couch or in bed or anywhere: “You nuggle me wike dis? Petause you my mom.”
It’s like he knows. He knows I need to hear it. “You my mom.” Those words snap me out of my lost in thought mode, or when I’m distracted by something online. They give me patience in those late hours when THE KID SHOULD BE SLEEPING. It helps me to remember that, to a three year old, I’m still his whole world. So when he’s clingy or whiney or truly terrible (and Pax can be really, amazingly terrible)….the only person he really wants to be with is me. His main source of comfort? Me. When he’s sad or lonely or scared, the person he turns to for reassurance that his life, despite its bumps, is safe and secure and supported, is me. Petause I’m his mom. It’s as simple as that.
Pax’s birthday was a few weeks ago. I was still in rough shape so it was pretty low-key. Pax was SO excited, “It my birfday?” he whispered as soon as he woke up. He was incredulous that such a thing could be for him only. Oh, sweet baby.
But the cake. Sofreakinghard to wait for us slow adults to get our morning coffee.
Waiting patiently
Starting to lose it…
No. Not yet. Pulling from inner reserves of strength.
You shut your mouth, Raines.
I SAID SHUT— “PAX! Hands are not for hitting!”
AUUUUGGGGH
Mom brought the flame thrower just in time.
Whew.
Sheesh. Happy Birthday, my crazy little man.
This was not our best Halloween. I mean – OK. We did have fun. On Halloween night a few of our friends stopped by, we had some wine and pizza, and the kids went trick or treating. I am enough of an extrovert that this was energizing. But I had WANTED to throw a big Halloween party (Raines had dreams of a haunted house in the basement) so we really had to scale back.
Stupid chemo.
And I was too sick to do any of the pre-Halloween festivities, like the awesome Halloween party at St. David’s or even the Halloween parade at Raines’ school.
I MISSED HIS FIRST PARADE!
Ugh.
But Mike and the boys went to both and after seeing the pics (and you know Raines)….it’s OK. Halloween may not be our holiday.
Halloween. WOOT.
Raines could give a shit about dressing up, and Pax, despite his love of costume, is terrified of all things Halloween.
(Also, the St. David’s party interrupted a too-late-in-the-day nap. So there’s that.)
Despite the chemo recovery, I still may have been more excited for Raines’ Halloween Parade than he was.
For cryin’ out loud, Raines. He did warn me, I guess. “Sometimes when I dress up I feel funny” he told me. Ok.
At least I can count on Raines’ BFF Dorian to get into the swing of things. Look at him – waving and strutting like a champ.
But the boys’ costumes were pretty awesome. Raines decided before the St. David’s party that he wanted to be a “Water King…..because water is the MOST POWERFUL thing in the WORLD” and stuck with it for actual Halloween. Pax’s costume came just in time.
I’m often woken up in the morning by a large moon head, staring silently at me. Then, a muffled voice: “Mum? I cant get dis off.”
Pax didn’t trick-or-treat. He started in Mike’s arms, got almost to the end of the driveway, then started crying for me. By the time I carried him inside the poor thing was saying, “No more zombies! No more zombies!”
Oh, my baby. Instead, he and I had a delightful time watching the Great Pumpkin and handing out candy. “HAP! HAL-WEEN” he’d cry.
Hunh. Now that I think about it…this Halloween was actually pretty awesome.
This morning, Pax informed us that he was done with diapers. Uh…Ok. So on went the underwear, and all seems well. Although…I don’t recall that he’s pooped yet today. Crap. TMI, I know.
In any case, Mike gave the boys a bath tonight, and after, Pax was running around naked (important), eating a banana (irrelevant).
Suddenly, I hear Mike’s voice: “Pax! Did you pee on the floor?” He’s pointing to an enormous puddle.
Pax comes over to inspect the puddle. Looks at it for a moment. “No, Dad!”
Mike looks skeptical. “Pax-”
Pax interrupts, “I not pee on fwoor!!!!!” his whole face is indignant, shocked.
Mike, I can tell, is slightly taken aback by his vehemence, as am I. “Ok….well. I’m just….thinking that….Pax? How did this puddle get here?”
Pax tilts his head to one side, thinks. “It not pee-pee, Dad! Dat….Dat…..Dat come fwom mine EAR.”
Oh boy.
We met with our doctors last week. After my face broke out in some horrible-looking rash for four days, I had HAD IT. I mean…going bald is one thing, but looking like a poster-child for a teenage acne commercial was the final straw. I was pissed.
So we went in. They confirmed that the rash on my face was most likely steroid-related (as opposed to the one on my arm which is a “taxotere burn”) and I just wanted to scream. These steroids!! I mean like holy SHIT. When something is worse than chemo, for crying out loud, that’s bad. Right??? “You describe anything as “worse than chemo” and you’re pretty much winning that argument.
I had gone in expecting to fight about negotiate the steroid dose. While chemo dosage is dependent on the size of the patient, it’s my understanding that the “pre-meds” are not. Meaning that everyone gets the same amount of steroids before their first chemo. I had found some doctor-written articles about how we needed to start personalizing the pre-meds (ya think??) and blah blah blah…
…but they opened negotiations with a half dosage of Decadron, plus tapering to avoid “the wall” I hit when I went off the first time.
I took their half-dosage and countered that they’d also have to reduce the IV steroids day-of.
Staredown. They agreed.
Surprised at how quickly we were reaching agreement, I asked to see the details. They sketched out a plan: 1 Decadron each morning and night for three days, then one pill a day for the next two days as a taper.
“No, No, No” I said. “That’s what I did the first time…all you are doing is adding the pills to taper, which means I’m getting MORE steroids this time around.”
“No, No, No” they countered. “For the first chemo, you took two pills each morning and night for three days, not one.”
Mike and I look at each other, shocked.
“Uh…” Mike says, looking like he’s about to laugh. “No, I didn’t!!” I cut-in. “Really. I only took one at a time.” I am 100 percent positive on this front – it was Instagrammed, even.
“You cut your steroid doseage in half…accidentally?” My doctors are incredulous.
Oops.
But in the end we all agreed that it was probably for the best, and that going forward, for Chemo #2, we are cutting the steroid dose in half AGAIN.
Yesssssss.
I can’t quit the steroids outright – with Chemo #2, there’s still some risk of allergic reaction (including, uh, LUNG SWELLING) but I’m feeling much better about this dose. I’ll basically be getting a quarter of what is given to the normal population. Which, given my history with most drugs….sounds about right.
My doctors also pointed out that despite my complaining of horrible jaw pain and headaches…I didn’t actually use the narcotics they prescribed. Even when the motrin wasn’t working. Oh. Yeah. That’s true.
And they also wondered how much of my Ativan (anti-depressant and anti-nasuea) I was taking. Because…that probably would help with some of the insomnia and depression etc. etc. etc.
Yeah. Well, see, I hate taking drugs…?? So I would only use those…in…extreme circumstances?
Extreme like chemotherapy? Oh, uh, yeah. Right. Extreme like that.
Whoopsie.
So my new mantra (as dictated by my doctors) is going to be: less steroids, more happy drugs.
Tomorrow the (quarter dose) of steroids start. Wednesday it’s ON. Chemo #2.
Bring. It.
In August, sometime after the mastectomy (but before my reconstruction)…I called about Pax. If you recall, at his two-year appointment (last November) his pediatrician had been worried about his speech delay, and wanted me to get hime tested.
I waited. Andwaitedandwaited. I was so sure that his speech was just around the corner…Pax understood everything so well, and could communicate in a variety of clever ways. While he wouldn’t use words, he had been mimicking his brother’s disappointed “awwwww!” sound for over a year. And Pax is funny. Like, real attempts at humor. For example, I’m changing his diaper one day and all of a sudden, he snaps his legs shut.
“Peepee” he says. “Dawn.”
“Your peepee…is…gone, Pax?” I’m trying to understand what he’s saying.
“Hide” says Pax. “Dawn? Dawn?” And now he’s holding out his hands, palms up, looking around frantically.
“Ah,” I say, comprehension dawning. “It’s hiding.”
“In!” “Wa-wa!”
“Your peepee is hiding in the water?” I sigh. Diaper change games are not my favorite, and knowing Pax, we could be here a while. He’s learned from his brother that peepee anything is funny. I’m eying the fresh diaper, wondering if I can wrestle it on him somehow. Suddenly, he kicks his legs back open in a big V: “DA DAAAA!!”
The peepee is back in business. I crack up. This exchange repeats several more times before I can get the diaper back on.
But this exchange is a pretty good example of how Pax talked: One word sentences.
Around the dinner table we’d talk about our day, and Pax’s contribution was often all “Ball! Raines! Fun!” and we’d know something fun happened with Raines and a ball. But there were no linking words, nothing beyond a single syllable, and I’m not sure I could even consider this set of words to be the doctor’s “linking words together” requirement. There was no sentence structure at all. And since he’s almost three…I called. Haverford child services and I made a date to do an evaluation a few days after my reconstructive surgery. Two weeks. That’s all it was. Two weeks.
In that two week timespan of course, Pax’s language exploded. He went from “Ball! Fun!” to talking incessantly about “piderman”. Apparently “piderman FIGHT!” and “piderman tchoot veb” but “piderman NOT fwyy only soup-man fwyy” etc. etc. etc.
He went through his whole Spiderman routine with the child development folks, including the shooting of webs, a few mad dashes to the kitchen and back and some serious jumping/breakdancing moves. “Yeeeaaaah…..” the main evaluator said, eyeing Pax, who was now down on the floor engaging her stuffed bear in a pretend conversation with his Piderman, “he’s not even close to qualifying for services”.
Well. Yay. They ended up doing the full test just for fun, and it turns out that he’s ahead of his age group in pretend play and motor skills. Color me NOT surprised. But it was gratifying nonetheless.
The morning after his evaluation we’re having breakfast, and I ask P if he’d like more toast. “Yup” he replies. Then he thinks about it. “Actually…fine” he says, waving his hand at me dismissively.
Fine? Actually? Well, that pretty much sums it up.
This past week was hell. It’s incomprehensible, really. I feel as though I’m being a bit melodramatic, but when I look back….
It was awful.
The first few days (when you’re on nausea-watch) were actually OK. The new anti-nausea drugs are amazing. I experienced some queasiness (and nothing tasted good) but it was a far cry from my mom’s experience. I was pretty manic from the steroids, so mom and I spent the first two days going on walks and shopping. Shopping. Truly. I was a machine. But on Friday, day three, the steroids stopped and suddenly, so did I.
It turns out that I’m one of the few people who really have trouble with steroid withdrawal. In hindsight, no surprise (I take children’s Claritin for allergies), but I was surprised at how bad I could feel. I had really, truly believed that I would be one of those people who “skate” through chemo – I’m so goddamn healthy and positive and can bounce back like a champ – that chemo? Would be tough, sure, but do-able.
I certainly didn’t expect to find myself in some sort of four-day hell, alternating between rage and hopelessness, feeling a sense of loss so profound that I could barely look at myself in the mirror. I would burst into spontaneous tears, multiple times a day. Pax would ask, “Hug, Mum?” and I would ignore him. God, just remembering that makes me feel physically ill. How could I do that? To my little P? I’ve never fully understood depression – true, clinical depression – but I feel as though perhaps I’ve gotten a taste of it. This…feeling….crept up insidious and cruel, and robbed me of who I am. I’ve never felt so naked and alone and despondent – totally unable to rally in this “fight” against cancer. There was no fight in me. Just tears, more tears, and anger.
On top of that, there was the “normal” chemo stuff to deal with. The body aches and “flu-like symptoms” associated with Taxotere hit me pretty hard, although it was tough to gain perspective since I was so mentally beaten. I’ve heard of people comparing chemo side effects to pregnancy: queasiness, everything tastes and smells funny, exhaustion, etc. This is all true. However, the key difference, I think, is that underlying all of the pregnancy symptoms – as hard as they can be – is this fundamental quality of vitality – you are literally growing a life! Chemo was a stark contrast – some of the symptoms may have been similar, but the underpinnings are all rooted in death. I felt sick, in some elemental, primitive way. I’d stare at my face, not recognizing the look in my eyes. It would cross my mind that once my hair is gone, I’ll look more animal than human.
This is hard. So hard. And frankly, something I don’t want to do again.
You start calculating percentage points: If I have a 17% chance of recurrence in the next 10 years without chemo….does one chemo treatment account for…another 5% reduction? 3%? Is that enough?
This is all nonsense, of course. There’s no such thing as “chemo lite.” (I already asked.)
At some point…things get better. It’s shocking, really. How one can be in such a dark, dark place and then – a few critical hours later – be laughing with your girlfriends on the phone, and irreverently referring to those four soul-sucking days as “The Crush?”
Those little cells of mine. Down, but not out. It’s amazing. Already my fervent, “I WILL NEVER DO THIS AGAIN, MIKE! MARK MY WORDS, I’M DONE WITH CHEMO” refrain is fading, and I’m rolling my eyes at myself. I can be so dramatic. GOD. Because it’s just chemo, for heaven’s sake. How bad can it possibly be?
One down, three to go.
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