Happy ReBirthday to Me

I'm officially one year old today. It's called a rebirthday by transplantees because it marks the day your new life began. One year ago today, Day Zero, was the day I got pulled from the wreckage of my old bone marrow, and it was the first day of the rest of my life. So March will always be my birthday. But May 29th is my Rebirthday. And the gratitude I feel for being here to celebrate it, not to mention the May birthdays of the two people I love most in all the world, simply defies description.

Crossroads
by Joyce Sutphen


The second half of my life will be black

to the white rind of the old and fading moon.

The second half of my life will be water

over the cracked floor of these desert years.

I will land on my feet this time,

knowing at least two languages and who

my friends are. I will dress for the

occasion, and my hair shall be

whatever color I please.

Everyone will go on celebrating the old

birthday, counting the years as usual,

but I will count myself new from this

inception, this imprint of my own desire.



The second half of my life will be swift,

past leaning fenceposts, a gravel shoulder,

asphalt tickets, the beckon of open road.

The second half of my life will be wide-eyed,

fingers shifting through fine sands,

arms loose at my sides, wandering feet.

There will be new dreams every night,

and the drapes will never be closed.

I will toss my string of keys into a deep

well and old letters into the grate.



The second half of my life will be ice

breaking up on the river, rain

soaking the fields, a hand

held out, a fire,

and smoke going

upward, always up.

Driving Miss Haggis

I finally am driving legally. Just between you and me, my old DC license expired in March. Nothing I could do about it because where was I going in March? The DMV? But now that I'm out and about a little bit, driving my child around, having a valid license has become a wee bit of a priority.

Which led me to the DMV yesterday. My doctor said to go, but avoid crowds (huh?!), anyone who looks unwell (huh?!), and try to keep it brief (okay, now you're just being ridiculous...). I took my mask and gloves along just in case. Luckily this particular DMV is in a rundown strip mall. It looks like the state bought out one of those organ stores from the 1980's plus a Spencer Gifts and converted them into the DMV. Which worked out perfectly, because I just avoided the whole "inside the store" seating areas where The Great Unwashed were hanging out and instead stood around in the mall, in between the Tobacco Shed and the Scrubs For Less stores. I just kept checking back to see that my number wasn't getting close (it wasn't getting close), and then went back to my little self-contained area near the two stores guaranteed to have no customers. It was a tossup between them and the little Massachusetts Souvenirs rolling cart, but I opted for the larger square footage for safety's sake.

During my hour wait for my number to be called I pondered why a souvenir store would be in a crappy strip mall near a DMV. What is this guy's business model? Oh, like all the Boston tourists will be FLOCKING to this rundown semi-suburban strip mall (that is so rundown they had to hang one of those big plastic signs saying "Mall Entrance" over the door so you'd know where to walk in)! And while the tourists are buying their work uniforms for $9.99 they'll want that lobster keychain! Or-hey--all those people who currently live in Massachusetts as evidenced by their presence at the DMV--what better market for tourist paraphernalia!? Because there's nothing I love more than coming home with a new license--and a Big Papi T-shirt. The final assessment is that the owner is trying to lose money for tax purposes. There can be no other explanation.

When my number was getting close I ran through my game plan in my head: Jedi Mind Tricks. These aren't the droids you're looking for. These absolutely are the right documents. You are not going to give me a hard time. You will be bowled over by the exceedingly polite and friendly person meeting you at your window. You are not going to make me come back here--because I am now approaching my mental limit of how long I can stand here in this sea of people without wigging.

My number came up. And I got a nice man. I don't think it hurts to approach the DMV person at his window with a Good Morning and a How Are You Today, since I assume they get lots of crap from people who are pissed they've waited an hour to even be seen. But luckily he was nice and had me on my way in 10 minutes flat. Albeit with a craptacular photo, but I truly, truly don't care. A few years ago, a bad ID photo would have sent me reeling. Today, I'm just happy to be standing up for a photo, so I couldn't care less. And besides, do you really go to the DMV with the assumption that it's a Glamour Shots appointment? It's a damn ID photo. Which never looks like you anyway, for good OR for bad. So when he showed me the computer-generated photo (which always makes your face look longer and weirder), I just shrugged and said, "Ah. It does the job. Good enough." Just get me out of this germhole, dude!!

So I got my license and went on my way to pick up Bambina at preschool. On the way out we ran into our old rabbi, the one who married the BBDD and I. I introduced Bambina to him, told her that he is the man in the wedding pictures, and mentioned on our way to the car that he is married to a rabbi too. (I'm always doing my "girls can do anything!" thing, aren't I?) She thought that was cool. She asked why he had no hair and I told her that it had been a very long time since I'd seen him, so long that the last time I'd seen him he'd had plenty of hair, so the no-hair was news to me too. To move the topic along I said that they had, maybe 6 kids I thought. She said, "That's a lot of kids!" I said that some families are big and some are small; it all depends what you like. She then said "I want eighty children when I'm older." Eighty?!! That's a lot of kids, my love. "I want eighty." Okay! Good for you! And then her follow up?

"And I want to be married two times."

To the same person? Or to different people? "Oh, different people. Two different people. Two times. Maybe a rabbi."

I had to stop the car I was laughing so hard. But the good news is that if I'd been caught for my illegal stop, I had a legal license to show for it.

Paint The Mother Pink

Okay, I go off the grid for one measly year--and someone turns the money PINK? I just put some cash in my wallet for the first time since I-don't-know-when and my five dollar bill is not a greenback. It's a pinkback. Or maybe a peachback? Shrimpboatback? ButteredYamback? Whichever way, I'm feeling either like Rip Van Winkle or like some dude who's just gotten out of jail and can't believe cars have GPS and houses have microwaves or something.

Pink money. Next thing, you'll tell me the Iraq War is still going on!

I've clearly been away too long.

Well, That Was Weird

So my first day out. Weird, scary but also good.

Good because I surprised Bambina by picking her up at preschool. That was awesome. Met her teachers (as much as you can "meet" anyone while surrounded by tons of kids and parents and trying to move everything and everyone out of the room). But that was cool.
Me heading toward Bambina's class

Weird and scary for a variety of reasons. First, I had forgotten that people have individual odors. Not bad odors. Just...odors. I was sitting in the DF waiting room for my shots without my mask on (having a minor panic attack every time someone walked too near me or whenever I heard someone behind me cough or sneeze), and every time someone walked past me I was completely overwhelmed by the smell. A full year of total-block masks will do that to you, I guess. I felt like that 18th century French guy in that book, Perfume, who was particularly sensitive to the odors of others (and who ended up killing them to make perfume from their pheromones, but let's leave that for another post, shall we?). So that was weird. I also decided that women wear waaaay too much perfume. I think I now understand what people who can't hear feel like when they get a cochlear implant and all of a sudden they can hear everything with no immediate ability to filter sounds out. It was all too much too much in a short period of time.

Second, I still like a wide berth in my dealings with the public, and having someone I don't know walk right next to me freaks me out. Yeah, it's partly their smell. But it's also just my heightened vigilance about what they're spraying on me as they go by. Like, if I can smell you after you go by, what are you leaving behind?

Third, I'm in a bit of a nebulous area, healthwise. I'm a year out from transplant on the calendar, but my immunosuppressive medication dose (albeit a different cocktail) is the same as it was in December 2007 thanks to the GVHD. So even though the calendar says it's time to start easing myself back into life, the reality is that I'm still not normal and won't be for probably another full year. And that's assuming my current megadoses of immunosuppressives keep the GVH at bay. Otherwise who the hell knows how long it'll take.

Which leads to the fourth thing: I don't actually feel that great every day, to be honest. All these meds have side effects that are some times harder to power through than a transplant. Which is something I never imagined saying. As evidenced by the fact that this post is going up around 5am, you can guess that I'm still getting about 3 hours of sleep a night. And my new med for the GVH (the one that causes diarrhea) is absolutely causing all manner of intestinal distress that makes it a wee bit difficult to really go out (now that I can) and do too much stuff. Because public toilets are still off limits. And, just to be a total complainer, there is no joy in eating. I had a nutrition consult the other day because I've pretty much eaten white rice, bananas, applesauce and white bread for two months. Got some good recommendations for adding protein and variety, but so far none have stopped the internal distress. So I think I'll be more able to enjoy my putative "freedom" once the GVH is under control, my meds have been reduced, and I can even wrap my mind around the notion of not just sitting in a restaurant, but being able to eat something other than a white bread/applesauce sandwich.

But, hey, as I always say, "every day after a transplant is a good day." And yesterday was. And so today will be. Now if I could just get some sleep, some happy poops, and a reduction in my NASA-sized lunar moon face, it would be a great one.

Hurts So Good

So how's my day going? Fabulously scary. Terrorizingly amazing. Anxiety-producingly well.


That's me getting my first round of vaccinations. Two months till my next ones.


That's me in an elevator for the first time in about 20 months without a mask on. Pardon the prednisone Moon Face.

Don't get too psyched. Still lots of precautions. And still taking it all slowly. No movies, no restaurants after 5:30pm. No crowds. No big parties. Avoiding sick people. No gardening. No dust. Kind of the same as before, only without the mask and gloves.

Besides, it's going to take a while for me to develop trust between me and my new immune system. We're only just getting to know each other, and it's still not really where it should be. So some activities will be limited by medical issues. Others will be limited by my psychological ones. All in good time. Maybe I'll do one new thing a week, just to ease myself back into life safely.

The one thing I AM doing today is picking my daughter up at her preschool. And THAT is the only thing that matters to me, has mattered to me, and will matter to me from here on out. I'll catch your parties next year. The next few months will be all about getting back into my kid's life, so if I'm going to stretch myself for something it will be that.

Gotta go! Don't want to be late on my first day. :)

Take a Hike

Bambina has wanted to go hiking for a while now, so we decided to take a mother’s day trek through a local gorge. It was easy enough for both a 3.11 year-old and a 36.2 year old transplant fogey, and damn if we didn’t have an awesome time. I always liked hiking in the nice, active, somewhat-workouty outdoor walk kind of way. I’ve never liked hiking in the bushwacking, bugs in your face, wiping your butt with leaves kind of way. Today was neither. It was the introduce-your-kid-to-hiking (and reintroduce-yourself) kind of trek up no mountains, hills or rock faces. It was the walk on trails, put down a blanket, eat snacks, skip rocks on the water kind of day, and Bambina cannot wait for the next one. Good times. Made more fun by Bambina asking "When is it going to be Children's Day?" since it apparently has not escaped her that moms, dads, grandparents and administrative assistants get special days in addition to birthdays yet she does not.

Poor Bambina, as I’ve mentioned, has had it. I feel like we’re dealing with a delayed grief response. Like, the closer it gets to me being able to do things with her and take her to school, it’s almost like it has made her realize just what she’s missed and lost this past year. So we’ve stopped talking about what we’ll do in the future when I’m better because it’s making the present unbearable for her. All of her reactions are completely normal and completely expected; just delayed. I fully expected to be managing her emotions this time last year, but it’s like the wave of them has just caught up with her (or perhaps she has just caught up with them) and she’s only now able to try to make sense of them. Which is no easy task for a kid, and honestly no easier for us. So we’re just letting her feel what she feels, reassuring her that Mama is always here no matter what, and that (sing it, Bob Marley!) Everything’s Gonna Be All Right. Just not yet.

In happy news, she still hasn’t lost her humor and her spunk no matter how much she’s ready to cry or meltdown at a second’s notice. She brought me a really cute painting of her hand prints from school. It had been laminated with a little comment card in it that said, “I love my Mommy because: She is gonna let me get a puppy and she tucks me in at night.” So apparently, Bambina is getting a puppy. Courtesy of me. Can’t blame a kid for trying, huh? Lower the Mama’s defenses then spring the “a puppy would make it all better” argument on her. After, of course, informing your classmates and teachers first. That’s chutzpah. And, you know what, I kind of respect it.

Speaking of chutzpah, Bambina has also apparently told her teachers that not only are we going to China to get Baby Sister, but that we will thereafter be bringing home two little brothers as well. BBDD says “not bloody likely!” I say never say never. ;)

Which, as I ponder this sweetest of Mother’s Days, in the sense that it was one that 14 months ago I wasn’t sure I was going to see, is maybe the best way to approach life. Never say never. You don’t know where life will take you, who it will bring into your universe, how it’s going to get you from here and now to there and then. So just try to enjoy the journey. And if you can’t enjoy it, try not to rage against it, using up all your energy in the pursuit of answers, explanations or reasons why sh*t happens to you. As Rainer Maria Rilke said in Letters to a Young Poet: ...I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

Take A Hike

Bambina has wanted to go hiking for a while now, so we decided to take a mother’s day trek through a local gorge. It was easy enough for both a 3.11 year-old and a 36.2 year old transplant fogey, and damn if we didn’t have an awesome time. I always liked hiking in the nice, active, somewhat-workouty outdoor walk kind of way. I’ve never liked hiking in the bushwacking, bugs in your face, wiping your butt with leaves kind of way. Today was neither. It was the introduce-your-kid-to-hiking (and reintroduce-yourself) kind of trek up no mountains, hills or rock faces. It was the walk on trails, put down a blanket, eat snacks, skip rocks on the water kind of day, and Bambina cannot wait for the next one. Good times. Made more fun by Bambina asking "When is it going to be Children's Day?" since it apparently has not escaped her that moms, dads, grandparents and administrative assistants get special days in addition to birthdays yet she does not.

Poor Bambina, as I’ve mentioned, has had it. I feel like we’re dealing with a delayed grief response. Like, the closer it gets to me being able to do things with her and take her to school, it’s almost like it has made her realize just what she’s missed and lost this past year. So we’ve stopped talking about what we’ll do in the future when I’m better because it’s making the present unbearable for her. All of her reactions are completely normal and completely expected; just delayed. I fully expected to be managing her emotions this time last year, but it’s like the wave of them has just caught up with her (or perhaps she has just caught up with them) and she’s only now able to try to make sense of them. Which is no easy task for a kid, and honestly no easier for us. So we’re just letting her feel what she feels, reassuring her that Mama is always here no matter what, and that (sing it, Bob Marley!) Everything’s Gonna Be All Right. Just not yet.

In happy news, she still hasn’t lost her humor and her spunk no matter how much she’s ready to cry or meltdown at a second’s notice. She brought me a really cute painting of her hand prints from school. It had been laminated with a little comment card in it that said, “I love my Mommy because: She is gonna let me get a puppy and she tucks me in at night.” So apparently, Bambina is getting a puppy. Courtesy of me. Can’t blame a kid for trying, huh? Lower the Mama’s defenses then spring the “a puppy would make it all better” argument on her. After, of course, informing your classmates and teachers first. That’s chutzpah. And, you know what, I kind of respect it.

Speaking of chutzpah, Bambina has also apparently told her teachers that not only are we going to China to get Baby Sister, but that we will thereafter be bringing home two little brothers as well. BBDD says “not bloody likely!” I say never say never. ;)

Which, as I ponder this sweetest of Mother’s Days, in the sense that it was one that 14 months ago I wasn’t sure I was going to see, is maybe the best way to approach life. Never say never. You don’t know where life will take you, who it will bring into your universe, how it’s going to get you from here and now to there and then. So just try to enjoy the journey. And if you can’t enjoy it, try not to rage against it, using up all your energy in the pursuit of answers, explanations or reasons why sh*t happens to you. As Rainer Maria Rilke said in Letters to a Young Poet: ...I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

A Whole Lotta Talk About Nothin'

I’m sitting in the car while the BBDD and Bambina are in the Children’s Museum. As lame as it sounds to sit in the car for an hour and a half, at this point I have decided that it beats hanging out at home, especially since I actually take the time to write letters and cards or call friends rather than finding random June Cleaver stuff to do and calling it a weekend well-spent. Not to mention that it does Bambina some good to have me along, even for the ride. As much as I am over this year already, she is really over it. I have such agita about not jinxing my recovery not because I need it to happen for me, but because I need it to happen for her. Kids express their feelings in various ways, as you know. For Bambina lately she’s just telling us in her own way that she needs some normalcy again. Because as normal as we’ve worked to make this year for her, and as simpler as it was to create when she was almost 3 rather than now almost 4, the truth is that there is a limit to how much you can “spin” a year of No Mama after about 340 days of it. She’s done carrying this burden and she needs us to know it, by virtue of needing lots of hugs and kisses and extra reassurances. So we’re giving it, no matter how much someone else might think we’re contributing to a minor regression in her development. I think that growing up and figuring things out at 4 is a pretty big job even when your mom hasn’t been off the grid and out of a large part of your life for a year, and sometimes needing a little babying is what makes it all manageable. And, honestly, when I look back at these days, what will I say? Did I have something better to do than hug my kid a little more? Did I need sleep so badly that I couldn’t sit with my kid for 30 seconds at 3am till she fell back to sleep holding my hand? Please. If this is not what being a parent is all about, I’m not sure what is. It’s not like we’re okay with regression in the sense of letting her break the rules of rudeness or bad behavior. Instead, we’re saying that if your kid is together enough to say, “I didn’t get enough hugs today!’ you ought to at least put down your latte and get your damn hug on.

It’s also easy to forget that kids get tired too. Just this week Bambina laid down on my lap, put her feet on the couch and said, “Mama. I am out of energy. I feel like I had a long day today!” Of course, an hour later she was raring to go just as I was feeling like collapsing. We were playing Snow White (wherein we act out the “story” of Snow White who saves the prince with the help of her friends the dwarves) and she said two really cool things. First she said something, laughed to herself, and then said, “Mama. Sometimes I make only myself laugh!” I cheered to myself, "That's my kid!!" and I told her that’s the only kind of laugh that matters.

Then she looked at a picture of the Disney princesses and said, “Mama, why the princesses wear such small shirts? Don’t they get cold?” On the one hand I was hoping she wouldn’t notice, on the other hand, yay! I replied that if I was their mommy I wouldn’t let them wear those shirts and that, yes, they really should cover their tummies and shoulders a bit more because that is more of a grown-up outfit rather than a princess outfit. And then I pointed to her Ariel and Snow White real-life costumes that are fully clothed and offered that they probably wear the full shirts most of the time but maybe they just wore those tiny ones for that photo. Honestly, it’s the only reason I’m psyched she doesn’t glom onto Jasmine from Aladdin, because—talk about agita—the BBDD gets crazy every time he sees the bare midriff and the bikini on something geared to his daughter’s age. Thank God for Snow White and Mulan who manage to be princessy without being half naked (although I wouldn't object to them overdubbing that 1930's Betty Boop voice Snow White's got in the movie which I think was considered cute then?) But the clothing issue does make me want to punch somebody at Disney right in the face. Like, did Ariel have to have a shell bikini top? Really? Does Jasmine really have to have a belly button showing? And it's not just the princesses that are all wrong in all the wrong ways. Here's a pic of Ariel's dad:

Note the icky man-nipple action and just too much torso and navel before the fish tail starts. It's grody. Yeah, and my kid's birthday party is going to be full of it. Because when your 4 year old wants a mermaid party, your 4 year old gets a mermaid party no matter how much Mama is disturbed by King Triton's goody trail.

Anyhoo. Moving swiftly along. To the fact that I need a drink very badly. Haven't had one in more than a year (must be nice to my liver which is already doing the work of three what with all my medications, not to mention that alcohol is toxic to bone marrow especially the new baby just-getting-started or the old-in-need-of-help kind), but don't actually really honestly long for one. The desperate need only hits me whenever I read Peggy Noonan and find myself saying out loud, "Good god, woman. You might be right!" Her article this week on why she's not so lathered up about the Reverend Wright is just the latest in a series that have had me just a little too close for comfort to her side of the aisle for my tastes. Now, maybe it's because she uses "hatred" of the English as an example, but damn if sister Peggy weren't speaking my language today: http://online.wsj.com/article/declarations.html
And if you're wondering, I like Springbank 10 Year or A. Rafanelli Cabernet. ;) I'm gonna need a case of each unless Peggy either gets some writer's block or gets a visitation from the ghost of Ronnie Reagan telling her to stop helping Obama already.

And that, barkeep, is about all I've got for you today. Like I promised, a whole lotta talk about nothin'.