La La How The Life Goes On

Archive for April 2010


Posted on: April 28, 2010

Poor Bambina couldn’t sleep tonight. I could tell she was struggling, but she was being such a great kid, finding stuff to do, to read, to draw that I was really proud of her. Finally, however, at 10:20pm, I figured it was time to help her out. So I went up to bed and had her come cuddle with me. She said she wanted to “talk about love.”
“I love you, Mama.”
“I love you too, Bambina. In fact, every single day I wake up in the morning I think, “oh wow! I love Bambina more than I did yesterday!”

{Big smile and a giggle} “Every every day?!!”

“Every single day. And it’s weird, because every night I think ‘I can’t possibly love Bambina more than I do right now because I love her as much as anyone can ever love anyone!’ But then–every single morning–Who Knew?!–I love you more!”

“What if you ever love someone less? Do you ever not love me?”

“Oh, it’s absolutely impossible for a Mama to ever love her girl less. Can’t
happen. And just so you know, I loved you even when I didn’t yet know who you were, even when you were in your Chinese mother’s tummy and i was wondering if you were born yet. I loved you all the way back from when Dada and i wrote to China asking if we could be the parents of a baby girl. As long as there has been the thought of you, I have loved you.””

“So do you love Baby Sister more every day too?”
{Aha! Now we finally get to the real issue that has been brewing for 6 weeks now…}

“Yes I do. But you know what’s so cool about love? You can’t ever take it away. You know how 4+2=6 is addition and 4-2=2 is subtraction? Well, there is no subtraction in love. Only addition. If we had 100 kids, I would love you all more every day–AND–I’d love you the same amount as I do right now. More kids wouldn’t mean less love because there can never be less love with a Mama and her girls, only more love every day.”

“Always more love? Even when you’re 40? Or 90?”

“Always more love. Even when I’m {gasp!} 40. And 90. Gigi still loves Gram, right? AND she loves all of us as well! So many people for her to love–at 90!–and nobody gets loved any less.”

{And then to the second biggest issue brewing:}

“What if you love somebody but don’t always like them? Because I love Baby Sister but I sometimes think that if this was ‘like’ [She makes a 6-inch space between her hands], Baby Sister and me would be about here {she points to the midway point between her hands}. Not because she’s bad but because I’ve just known other people longer and I like them more. But maybe every day I’ll like her more when I get to know her better.”

“Of course you will, my love. We’ve only been home a month and we’re just getting to know each other. And by the way, its okay to love someone but not always feel like you like them or what they do. But you’ll like each other more every day, and when you’re older you’ll be so glad you have each other.”

“Okay. But just so you know, some days I may like her less.”

“Fair enough, my love, fair enough.”

And with that, she fell instantly asleep


No other way to say it: my youngest child is a SPAZ. This kid cannot stay on her feet for more than 5 minutes without smashing her face into the wall, the floor or a large item of furniture. Why? Because she clearly thinks she’s an Olympic sprinter. at the age of 17 months We had friends years ago who had a “no running” rule for their daughter, who was the same age as Bambina. We were incredulous, like, who stops their kid from running except overly-cautious, clearly-troubled individuals who should perhaps read a parenting book or two? OUR CHILD can run anytime! Because we are so enlightened and our child is so smart! Well, pot meet kettle. We have just instituted The Jones Family No Running in the House rule, this after Baby Sister acquired a minor black eye from her latest spill; the 4th of the day. She just so badly wants to run that she forgets that she is still achieving balance while walking. Okay, that and the fact that she doesn’t seem to notice when there are things like shoeboxes or coffee tables right in front of her. She’s just happy-chappying around the room, all pleased with herself and her mad footmobile skills, then BLAM! Hello, dining room chair. Sometimes she wails, but most of the time she looks a bit confused then just gets up and spazzes along to the next misadventure. No big deal for her, exhausting for us.

Speaking of exhausting, last night was my first alone with The Twister Sisters. Oh dear god. As you know, Baby Sister is completely attached to Dada more than anyone. So he went out around dinner time, which meant I only had to do about 3 hours of solo duty. Well, Baby Sister (being a toddler) decided that while Dada was away, she would see if I could (as Jack Nicholson warned) handle the truth. Cue three hours of: running, smashing her face into the floor twice, refusing dinner, and generally being entirely uncooperative–with a smile. I removed her wet diaper and (foolishly) decided that, since we were putting on jammies in 5 minutes, I’d let her freeball until then. You already know how this went, don’t you? Three minutes later I smell a Code Brown–and notice a big chunk of (thankfully cohesive) poop coming out of her pants leg onto the floor. Like, you just HAD to take a crap right now? In this 5 minute period? So I scooped up the poop ball with my hands, and managed to disinfect myself and the area before bed, all the while wondering if she was consciously or unconsciously testing me, to see if i was up to the job. Thankfully there is this invention called a “television” which, when turned on to Sprout On Demand, provides ample child care when one simply must remove poop from one’s hands. So we made it to bedtime unscathed and on good behavior, thanks to the electronic babysitter–and my quick poop-grabbing reflexes. Who’s your mama!


As many of you know we used to live in Washington, DC. We LOVED Washington, DC. We lived right on Capitol Hill, took the metro, walked every night to the dog park, and generally had a fun urban existence. Until the arrival of the Bambina, when all of a sudden that dude masturbating on the park bench seemed less icky/funny and more threatening to my child’s wellbeing. When finding a condom in the playground was, again, less “Que sera, that’s city living” and more, “Jesus Christ! My kid sits on this see-saw!” When having to have your fedex packages delivered to your office because they always got stolen from your porch became less de rigeur and more disconcerting because–now that I don’t work at an office–who the hell is up on my porch while I’m in the house with my kid?

That said, the joys of living in DC were many and beautiful and valuable and deeply rewarding. I used to walk Bambina in her stroller around the Capitol, around the Thurgood Marshall Federal Building, Union Station, and do a running commentary (that I’m sure was all Charlie Brown Teacher Voice [wah wah wah wah] to her 10 month-old mind) on the history and significance of these buildings, these institutions, this democracy. As she got older, she always knew we were close to home when she saw “the big dome.” The big dome became her touchstone for returning, for family, for familiarity, for friends. And she always knew she was close to the big dome when she first saw The Little Dome (the Jefferson Memorial). It was a neat and wonderful experience for her to have at a young age, to identify so closely with the architectural icons of our nation.

Please imagine my horror yesterday when she said the following: “Mama! You know how I know we’re close to home? Like in DC it was the big dome? When we pass the gone-out-of-business Tweeter Etc.” I almost steered the car into oncoming traffic to end the rapidly-unfolding nightmare. This is my suburban hell, friends. My child identifies home with a defunct 80’s hi-fi purveyor. In whose hallowed halls the words “woofer” and “turntable” were once uttered, triggering, I’m sure, a revolution! Of what I can only imagine.

Speaking of imagining, I am hoping that the end has arrived for my monthus horribilus. I finally had a day this week where I wondered aloud(?), “Who do I have to fuck around here to catch a break?” First the ear/blood thing. Then I had a weird growth on my leg (totally benign, thank you), then I threw my upper back out trying to lift my chunky funky monkey, then still hadn’t managed to get rid of the left arm blood clot, then went to Dana Farber and found out (gladly?) that my legs and upper arms are not turning to massive cellulite because of the prednisone weight gain, but because of the GVHD attacking the fibrous tissue under my skin–with the long-term consequence of me being unable to move my legs if they don’t arrest it. Frack. So I’ll be getting something called ECP, which is an ongoing process whereby they take a bunch of blood out, hit it with ultraviolet light, then put it back in me. For some reason, it kills the T-cells that are messing with the skin, and has few side effects beyond fatigue and low blood pressure. It works for 80% of the people, so I’m hoping I’ll be in that number. Certainly because I’d like to not have my legs stop moving from scleroderma, and also because, speaking of beltways, mine is getting ever-larger from the damn prednisone and I’d like to not be put on more. There are only so many pant sizes you can go up before you really just feel like the lovechild of Augustus Gloop and Violet Beauregarde post-Wonka misadventure.

And with that, I’m off to have a midnight twinkie.

Posted on: April 19, 2010

So my mom visited last week. She was supposed to visit anyway to meet Baby Sister, but came earlier since I was in the hospital. (Or, for those of you interested in the truthful particulars, I called my sister and told her to send my mom up that day because (among other things) I felt so not well that I was sure I was going to die without seeing her, and I was none too psyched about that possibility).

What triggered the drama was, of course, the fact that I was exceedingly fucking sick. My blood counts were so bad that I remember thinking they hadn’t looked that embarrassing since before my transplant (30,000 platelets? Are you kidding me?). Then, when they said I had “strange interstitial spot-like marks” on my lungs I almost came out of my craftmatic automatic adjustable living bed to run home and avert what seemed to be my rapidly-arriving dismal fate. Those of you who know, know that my Dad died of pulmonary fibrosis. He died three days after we took him to the ER for what seemed like something else, maybe congestive heart failure, maybe pneumonia. But regardless: three days later, the man was dead from a lung problem we hadn’t seen coming. So when the doctors were all, “Hmmm…[scratch chin]…interstitial lung blahdeeblah” and I’m looking at the calendar, my brain went into overdrive, like, Dad I love you, but fuck if I’m repeating your story. That is YOUR story, not mine. Not gonna happen. And how will it not happen? Easy: my mom will be here, and we all know that nothing bad can happen when your mommy is around. Right?

So that’s how the Sunday visit became the Wednesday visit. And how the Meeting of Baby Sister ended up being not at all the ceremonious familial baton-passing I’d had hoped. Instead of me gently introducing BabySis to her PoPo, PoPo just arrived in a cab and set to work doing laundry and hanging out with Bambina. Funnily enough, the totally non-exciting nature of the meeting seems to have been the right one, because BabySis totally is cool with Grandma. It helps that (Mum, do forgive me for saying this, especially after all of your help with the Bambina lice problem and the Molly almost-dying problem and the mountains of laundry problem) both of them are a bit socially anxious as people go. My mom was of course excited to meet BabySis, but was pretty much expecting and seeking no love, focusing instead on keeping Bambina distracted and busy. Well, turns out Baby Sister likes it when you don’t really want anything from her and don’t act like she’s all special (and therefore seem threatening, like maybe you want to take her somewhere away from us), because they were hanging out alone in no time, two initially-shy, avoidant ladies doing their thing together. (I probably don’t need to add that this lasted a couple of days and then she went into full grandma mode–because you can only suppress the grandma stuff for so long before you just have to pinch a cheek or two). But by that time, the foundation of “let’s just look at each other surreptitiously and not say anything until we feel more comfortable” had been laid, and things were fine.

In the interim, my left arm started hurting. The arm that had had the PICC line in it. I emailed my doctor, who said breezily, “It’s probably a blood clot. Apply warm compresses and I’ll see you next week.” I’m sorry. Did you just say “blood clot” and then “next week” in the same sentence? Apparently, this is not a big deal where he comes from? I’m not sure about you, but whenever I hear “blood clot” I’m picturing myself seizing up pulmonarily a la Fred Sanford (You hear that Elizabeth? I’m comin’ to join you!), and heading off into that great junkyard in the sky. Him? No big deal. See you next week. Heat it like it’s a charlie horse. Nice.

Speaking of nice, my youngest daughter is a prolific pooper. Just today Dada had to change her in our bedroom because the stench was so pungent and we couldn’t stand one more second of what we now call a “Code Brown.” (We totally stole that from a good friend whose son required changing at our house one day due to said Code Brown incident). Anyway, Dada and I did that initial look of “do you smell..? Is that? Surely not…Oh dear. It IS.” So a Code Brown was called, the diaper stuff was retrieved, and the bunda was fresh and clean in no time. Only, Dada forgot to throw the diaper into the (totally effing useless on my kid’s brand of poo) diaper genie. So we’re playing upstairs with the girls, and I walk back into our room a while later and say out LOUD, “Oh my god, who crapped in our room?!!” Which precipitated a whole other situation, because Bambina then said, “What you mean by ‘crap’?” Awww, CRAP!! Dada shot me a look. The look that said, “I have asked you to stop saying that word and now look what has happened! You have opened the gateway to our chlid using a diatribe of expletives as if she’s ordering a Shirley Temple!” So I had to humble myself before my 5 year-old and confess prostrate that “crap” is a “not polite word for poopies, and Mama didn’t mean to say it and shouldn’t have said it.” Unfortunately, Bambina is a girl who knows that Coffee is For Closers, so she “innocently” offered the idea that “Well, we can say it in the home but not at school, right?” Um, no. We’re just not going to say crap anymore. dot dot dot! Aww, crap! I just said Crap again in front of her! Noooooo! At this point, Dada was just beyond. Beyond what I don’t know, but suffice to say he was beyond it. So I began my long march back to ethical and decent mommyhood by telling Bambina that Grandma and Bumpa kicked my ass soundly when I said crap. (I keeed! I told her I “got in trouble”). That the word is for people who don’t have better, bigger words to use. That we just need to have a “no crap” policy in our house because it’s just rude (aww, crap! I said it again!). Luckily I droned on for so long about actions and consequences in the Groundskeeper Willie home circa 1979 that she finally said, “That’s boring!” and begged to read a book about bugs instead of hammering the word crap to death for another five minutes.

Looks like Mama will be having that coffee now, doesn’t it? ūüôā

Good times continue apace at the Jones house even in the absence of Mama, thank God. This is the Bambina at her first soccer practice, which she LOVED.

And then there’s Baby Sister chatting on her Blackberry.

Although, when I say “good times” I am of course not referring to poor Dada, who is on the hook for the whole shebang. My mom flew up to help, and his parents are helping too, but when you have a 17 month-old who will essentially go to no one but yourself, you’re kind of trapped. So the Dada will have major hand in our relationship for the next few months simply because of his valor above and beyond all expectations in this time of crisis. Please remind me of this when I whine that he’s been playing soccer ALL DAY…waaaaaah.

The family visits every day, which really makes me very happy. Obviously I was having all kinds of concerns that Baby Sister would forget me or cease to recognize and accept me. Especially after the first visit where she would not come to me or interact with me, I was really worrying about the effects of my absence on our bonding process. I said as much to the Dada the next day, even as Baby Sister was back to loving me and letting me hold her. He very gently mentioned that perhaps BabySis did not go to me the day before because, “You really didn’t look like yourself.” Apparently the 5 liters of fluid on my face and the oxygen mask gave me more of a ghoulish appearance than perhaps a new mother would be going for:

In any case, when I get home (which I hope to be happening any day now), I am going to make the Dada a nice dinner and tell him to put his feet up. This of course means that I will be calling Nick’s Pizza Delivery and that I will go answer the door. ūüôā

Those of you who know us know that we just returned from China with Baby Sister.  The trip was fabulous and we are all adjusting and doing really rather fantastically for people who just met each other a month ago.

Before we went to China I made a Family Pronouncement that went thusly:

“Listen up, Jones Family! ¬†Hear me now and believe me later: NO ONE and I mean NO ONE in this family is to get sick in China. ¬†No one will fall ill on any airplanes either on the way to or on the way home from China. No one will contract a disease or spike a fever or require more than a bandaid while we are living in a hotel. There is henceforth a prohibition on projectile vomiting, diarrhea, dysyntery, malaria, febrile seizures or any other adverse medical event until this trip is over. ¬†There is to be no disease, no illness, no infirmity until March 28th when we’re back at home. ¬†After that, I don’t give a rat’s ass what happens.”

Anyone want to point out my mistake here?  Let me help you out: I am now in the hospital recovering from an ear-infection-turned-blood-infection that started a few days after we got home.  Perhaps, in my enthusiasm for disease-control I should have been slightly more circumspect in ending my pronouncement, no? Gotta fire my speechwriter.

So it’s now 5 days in the hospital on every full-spectrum IV antibiotic available to the ¬†medical community. And thank God. ¬†I apparently was so sick that the doctor said that if I’d arrived at the ER even a few hours later, “I’m not sure we’d have been able to help you.” ¬†How’s that for bowel-lurching scarytalk? ¬†To my immune-suppressed body’s credit, I have bounced back faster than expected, the infection is on the run, and Mama is awaiting discharge in the next couple of days. ¬†But the interregnum has been excruciatingly bad. ¬†But also a wee bit funny.

I had an episode of V-tach that was poetic in its choreography and timing. ¬†I was sitting in bed, the nurse was taking my vitals, and I felt a wee flutter in my chest. I thought, “Oh. There’s a wee flutter in my chest. ¬†Whatever. ¬†When’s lunch?” ¬†The screen went crazy. The alarms went crazy. The nurse looked at me for a reaction. ¬†At the exact moment of alarms screaming/screen flashing/nurse looking, the medical team entered my room to do late morning rounds. ¬†It was like one of those scenes on a TV medical drama where you’re thinking, “Oh right, like they just happen to be right there when the guy is coding, right?! Please! I’m going back to Two and a Half Men.” ¬†But it really did happen just like that.

Then it got better. ¬†Because as these ten people are all staring at the screen/staring at me/staring at the screen/staring at me, I’m trying to figure out what all is going on on that screen that’s got everyone so jacked up. ¬†The crash cart comes flying in. ¬†Then the EKG cart comes flying in, I’m hooked up, and it’s off to the tachycardia races. ¬†Paper is flying out of the machine, hungry little resident hands are grabbing at it to measure whatever it is they measure on that graph paper, and I’m still trying to figure out why I’ve merited the Grand Rounds treatment. ¬†Just shy of three minutes later, my rhythm apparently goes back to normal and my world becomes immediately abnormal.

You see, V-tach is apparently a “not good” rhythm to have. Even if I had no idea I was having it? ¬†Yes. ¬†Even if I’d been at home and I’d have gone back to vacuuming with nary a thought? ¬†Yes. ¬†It’s the “She died instantly of a heart attack” rhythm. ¬†The one that generally kills you in 30 beats. ¬†(This is what I’ve been told; I make no claim to any medical knowledge whatsoever, having that grand total of zero years of medical school under my belt). ¬†So now I’m getting all the cardiology workups to ensure that it was a result of perhaps myocarditis from the infection rather than some latent V-tach impulse that wants to off me in the back of my yard on a sunny Tuesday afternoon to then be mauled by wild dogs and squirrels and only later discovered by a horrified Dada investigating that smell near the Japanese Maple. ¬†But not to worry. ¬†After the tests it’s all sunshine and lollipops.

In another made-for-TV event, I had my soap opera doctor moment today. ¬†I was going to ¬†walk out of my room to get some ice water. ¬†As I opened the door there was an exceedingly HOT man standing directly in my path with his hand up as if he were about to knock on said door. (I swear I’m not lying! Two and a Half Men is a repeat anyway!) ¬†“Miz Jones?”

Me: All fluttery and googly, “Um, yes, that’s me.”

“I’m Dr. Dashiell Charming from Neurology. May I examine you?”

“Why, yes, Dr. Charming, come right in.” ¬†Seriously. This dude was from Central Casting: gorgeous eyes, perfectly-coiffed hair, crisp dark jeans with a well-tailored tweedy jacket, leather brogues, and the perfect Jewish-but-Anglicized name that is perfect for television. ¬†I’m going to say maybe Maxwell Caulfield circa 1984 if I can get that obscure on you.

You see, in catscanning me to all hell, they found “stuff” on my brain. ¬†Turns out it’s something to do with my “white matter,” a result of all the chemo from my transplant, signifying pretty much nothing for me in any practical way at the moment, thank god. But as Dr. Charming was having me touch my nose with my eyes closed and remember 4 words to be spouted back in 12 minutes, I was seriously thinking I should be saying something like, “You know Dakota will never forgive you for this.” To which he’d reply, “Yes, Miz Jones, but that’s okay because you see, I’m not really Dashiell Charming, I’m his evil lookalike cousin Chance Silverlake!” We’d passionately embrace, only to be walked in on by Dr. Chester Steaknife, the Chief of Neurology and ex-husband of none other than….Dakota!

That would have been cool. Instead, he pronounced me “totally fine” and went on his hot soap opera doctor way. ¬†Or so I thought. ¬†Because as I closed the door to my room and spun around to my mother (Oh, I did mention my mother was present for this whole reverie, right?) I said rather loudly, “Could that guy have been any hotter? Oh my god!” I then opened the door to go get my ice water (one wonders why, since I’d just had a tall glass of Dashiell Charming)–and HORROR! He’s still there! At my door! Dude heard everything! So I said, “Thanks again!” and shuffled off in my totally sexy johnny with pants to go get my beverage. Dude wishes he could tap that. Although, he was so good looking I simply have to think he’s gay. Do you know what I mean? There is a level of awesome hotness that no straight man can achieve (through no fault of his own), and I’m thinking Dashiell Charming was coming pretty close to that line. The bone structure, the haberdashery, the charm, the talent, the all-business-but-you-know_I-can-rock-you-later-vibe. And, let’s face it: the shoes. Those shoes are what put him near that line of Unachievable Gay Hotness. Either way, I had my I Play A Doctor On TV moment. And believe me, as I coughed all over him and detailed my projectile vomiting from a few nights hence, Dr. Charming had his, because what real soap opera doctor doesn’t live or die by the devotion of demented, ill-dressed, middle-aged women? ūüôā

I’m the Mama. ¬†I’m a former political animal and professional fundraiser who has taken to raising the chill’ren and imagining herself a writer in some fashion. ¬†My cooking is horrible (I am learning), my housekeeping skills are what my father would have called a step above “slatternly” (please buy me a roomba), and my ability to not say the F word is hindered by the pure joy I get in saying it (redacted). My personal limitations notwithstanding, I have a rather fabulous life with my husband, the Dada, and my daughters, Bambina and Baby Sister. In short, life is pretty much everything I’d ever want.

Before you start hating on my nauseating Ode to Domesticity there, I will add in the balance that¬†I have a long and checkered health history of random, rare and life-threatening diseases. ¬†I take a sick pride in that, thank you very much. ¬†After all, there’s not much else to do about it, is there? ¬†My nemesis is called Dyskeratosis Congenita. My family has a rare mutation of the rare disease that visits various and upsetting conditions upon us, mostly involving our lungs, skin and bone marrow. ¬†This means my family has to get our skin, lungs and bone marrow checked like you check for gray hairs or pimples. I was the lucky recipient of a stem cell transplant in 2007 that saved my life. You can read all about that, should you care to visit that mess at There are a lot of F words there. ūüôā

DKC often seems to rule (and ruin) my life, but the truth is that I still rule no matter what. Why? Because Mama Says So. ¬†And because, although I would gladly give this affliction away before I type the next letter, I still rule because it has made me stronger in its attempts to defeat me. ¬†I still rule because DKC showed me the love of family and friends. It taught me to accept help, admit fear, express uncertainty. ¬†It showed me how little I can have and still be happy if I care about actual happiness. It caused me to adopt my daughters, the two individuals in all the universe who finally explain my existence and my purpose in being alive. It taught me that you can have a shit body and a shit day and a shit week ahead of you, but you’re only going down if you let it take you down. It taught me that the only way you lose your dignity is when you ¬†surrender it yourself.

So, yeah. I rule.

Then there’s the Dada. ¬†A man about whom I write few things, simply because he’s less into being profiled on the interweb than perhaps others who reside in the home. ¬†Suffice to say that he’s sweet and cute and lovely and deceptively pacific when not on a rugby field. ¬†He cooks like a dream, he tells the girls impromptu stories that are so good his name should be Silverstein, and he continues to love me even though I am nothing short of a goddamn ordeal in the home and out.

Our two daughters were adopted from China, and they also rule, but not (solely) because of that fact. ¬†Rabbi Lawrence Kushner once wrote, “God sends us children to teach us what he has given up trying to teach us in every other way.” ¬†Rabbi Kushner was right. ¬†Every day I have to find some part of myself I didn’t know I had in order to do my job as their mother. ¬†Every day I have to be a better person than the lesser angels of my nature would have me be in order to do my job as their mother. ¬†Every day I learn from my girls, as they learn from me. ¬†Sometimes it’s about sharing, sometimes it’s about family, and sometimes it’s about farts. No matter what, every day these girls force me to both reach beyond myself and check myself, and its a gig I wouldn’t trade for anything. ¬†Not even a cooking roomba that says fuck.

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