For those who may have stumbled onto my site after seeing the Rachael Ray Show, welcome!

I’m a mother to toddler twins (who arrived 10 weeks early!), an author, a photographer, a fat camp champ, a former thin person, and a wife (not always in that order, lest I wind up with another husband turned Wasband). If you really want to know me, you can start with the facts.

I blog about everything from duct taping my daughter into her diaper to achieving "balance" and which components actually make the best damn burger.

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Hair Washing, Hair Raising: How to Give a Child a Bath

Slacker Mom

Slow Starts

Is "Special Needs" A Retarded Term?

Firsts

Milk Pail Fail

The panelists introduced themselves, each sharing a small story that identified them as mothers of NICU twins, of a child with down syndrome, of a son with autism. Hearing one mother of an autistic child share a story of how she received a comment on her blog instructing her to go ahead and “drink some more mercury, so you can take care of another vegetable” made me ill. Disgusted, actually, with the capacity some people have to be so cruel. Another mother confided that only a few months ago she gave birth to a little girl, and the nurse handed her over with a “congratulations, it’s a girl, and you know she has down syndrome, right?” Before hearing this, the mother was told she was having a healthy baby girl. She had all the tests, tested negative for abnormalities, and then she admitted to the BlogHer room, “Well, I just feel horrible. I never celebrated her birth, and I never expected…” Everyone in the room nodded, understanding.

It was heavy. It was real. It made me remember, and it made me cry. I still wonder how much of it is my fault.

When our doctor told us he’d just performed emergency brain surgery on our son, that there was pressure in his head that would’ve killed our sweet bean had it not been relieved immediately, I didn’t ask the doctor, "Is he going to be a mentally handi-capable child?" I asked, "Is he going to be retarded?"

He answered, "I don’t know." I was sick and hated that no one could give me a guarantee. I’ll always hate the unknown, despite the knowledge that there are many blessings hidden in it.

Months later, I referred to my son’s pediatric walker as a "’tard cart." Soon the emails filed in. "Given your large readership, you have a responsibility. You shouldn’t write such things." "As a mother of a child with a disability, you should know better!"

I do know better. It’s not that I’m insensitive or that I don’t have access to a medical dictionary or thesaurus. I know there are appropriate words, but the proper PC-friendly terms both irritate and scare the shit out of me. They sound horribly serious and quiet, as if they’re coming from the sterile mouth of an uptight math teacher who believes those who indulge in any position other than missionary should spend their lives repenting. On their knees. She won’t say "sodomy," "head," or "blowjob," but will allow "oral copulation" when speaking of a list of deeds invented by Lucifer. "Mentally Challenged" is a phrase polite women in long denim skirts use after clearing their throats. The kind of women who wear knee-highs and memorize poems. If there’s any kind of movement to be made in an effort to make disabilities sound far less terrifying and stigmatized, it’s got to be reclaiming "derogatory" terms and using them lovingly. I have no doubt, one day, people will refer to the word "disability" as derogatory, given that its definition includes "disadvantage."

There’s a manifold of innocuous words that, given their context, become downright caustic. "That’s so gay," for instance, seems harmless enough, except when you stop to consider that it’s a subtle way of inferring that things that are lame (also problematic), pathetic, or imbecilic are in essence "gay." It’s a phrase I hope I haven’t repeated since I crimped my hair and pulled it into a banana clip, but I couldn’t promise as much. So, what did my use of the phrase "tard cart" possibly say about any of my latent feelings about mental and physical handicaps? I’d deleted it as soon as I realized what I’d written had hurt people, but after giving it more thought, I wonder what’s so bad about it? I hoped that bringing it up to a room full of women at the BlogHer ’08 "Blogging About Our Children with Special Needs" panel might further my understanding.

When can you use a derogatory term (to take the sting out of it, or simply to be able to discuss it at all)? I believed that taking ownership of my situation and the words that were tied to it was empowering. Did others think so? Hopefully, I’d find out.

I raised my hand and began with this: sometimes it’s so frightening, and you feel so alone, but you have to get it out, and our fears are not always expressed in the most politically correct way, but is it okay if it’s meant with love? I mean, is it okay to use humor, of whatever brand, to get you through it, so you can discuss it openly and, most importantly, assault a bit of the negativity that marks the lives of disabled children? In other words, when it’s yours to experience, can’t you do with it what you’d like?

Except I didn’t phrase it just that way. I rambled and wasn’t sure any of it made sense, but at least I was putting it out there. I’ve certainly heard from readers who’ve suggested I stand back from the situation and realize that words can hurt, and as a writer, as an advocate for my child, it’s my responsibility to make a statement, to be politically correct. It’s my job to play nice, and "why when you can pick something nice and positive would you use such an ugly word?" But I wanted to hear from a room full of people who also might have felt that platitudes were derogatory, not the terms themselves. I hate being patronized and pitied. I hated the "tsk" sound I heard on the other end of a phone conversation. I hated "I’m so sorry for what you’re going through." I didn’t want to be handled with kid gloves or polite sensitive terms.

"Without question," I admitted, "I tend to make fun of things that scare me. When Lucas’s neurosurgeon suggested we take the dreamy little marksman across the hall to be assessed for plagiocephaly (aka flat head syndrome), which was the least of our worries, I turned to Phil and began to laugh. ‘We’re going to have a fucking helmut kid.’ Who loves that little tater tot more than his own mother? Why can’t I call him whatever the hell I want when everyone knows it’s said with love? And people do know that.

Win, lose, or walker, they’re mine, and I love my kids unconditionally. It’s why I can joke, not mean spirited but fun. The humor is never from a hurtful place, and the words are always said affectionately. Isn’t that enough? Otherwise don’t we run the risk of alienating people who are too terrified of insulting people by voicing their real concerns?" Except I didn’t run on nearly that long.

HERE’S WHAT I WAS ABLE TO DIGEST OF THE RESPONSE: It’s rude, or at the very least, incredibly lazy of you not to make the effort to phrase things in a polite, sensitive, “right” way, even if the phrasing is happening in your own world, among your own friends or readers, on your own blog. It’s the least you can do if we hope to make changes, strides, steps forward.

"Is there a ‘wrong’ language in telling our own trying stories," I asked, "when really, we just need to get it out, need to tell it in our own voice, with our own words, to deal in our own way? Should we not bother if those words aren’t politically correct?"

“Sorry, keep it to yourself,” I was told in several more indirect words than that. Actually, I was instructed, “Tell a close girlfriend, say it the way you need to, but don’t put it on a blog because it perpetuates the negative cycle of disabilities.”

"You’re bringing attention to the disability as a negative when you use insensitive words, even if humor is your coping mechanism. Talk to a girlfriend, frankly, about it, but don’t publish those thoughts because it does more harm than good, without positive words to speak about disabilities.”

Perhaps more accurately, it was documented on another blog as this: Using humor and language when discussing child’s disability: Language frames how we think about things – if you accept a language that puts disabilities first and foremost in the minds of people, that’s not positive for anyone.  So many loaded words in our language, but important not to diminish our children when we speak about them.  There are many repercussions when using certain language and types of humor, maybe more than what one person really can deal with.

I thanked them for their opinions and sat quietly taking in their response. Afterward, several woman from the audience approached me, agreeing that people can be too uptight, and maybe it’s time we speak honestly about how we feel and with what we’re dealing without the pleasantries. There’s obviously an appropriate lexicon when it comes to speaking about disabilities. A socially- politically-sensitive way, where “mentally retarded” is, at the very least, replaced with “mentally challenged.” No one wants to insult anyone, especially with such heightened sensitivities, with a history implied, with a right way of approaching all that’s seen as going very wrong. As we all know, though, humor can be one of the best medicines.

I make fun of myself. When I was shipped off to fat camp, I didn’t call it "fitness weeks." I don’t think commenting on our perceived downfalls with humor and universally frowned upon words is a failure; it’s a strength. It allows us to reverse their power and reclaim it. I tease my husband, my close friends, and my kids, always with love and never ever in a way that would really hurt. They’re kids. I would always treat them like kids. Funny, quirky kids.  Dwarves who whistle while I work. But until Disney, Pixar, Dreamworks, or Warner Brothers can create lovable cartoon characters depicting disabilities with an updated group of dwarves named Quirky, Digger, Shout Out, Fall Down, Sir Limp A Lot, Stutter, and Banger, it’s up to me to do my part in breaking down a few walls. Or at the very least, continuing to express myself as if no one else is reading.

I felt myself holding back tears at dinner. We went out tonight with a couple whose child is in the NICU. I wanted to show them how much we understood without making it about us and what we’d been through. I wanted them to know we wouldn’t say the dumb things people tend to say when you have a child in the NICU, horror stories by well-meaning parents. It didn’t matter that we’d gone through it ourselves and understood the pity with which people greet you. Because it wasn’t happening to us. And I wanted them to know that I knew that. That I wasn’t the kind of mother to go on and on about what we’d gone through. I wanted to ease their minds, to let them know they weren’t alone, that it gets easier. And that it gets harder… the way it does for any parent.

As we listened to their story, celebrating the fact that their baby finished an entire bottle without d-stat’ing or having any A’s or B’s, I remembered it all so well. All those moments other people never understood, checking charts, and celebrating double chins, and lower doses of oxygen. I remembered the pumping room at the hospital, the conversations I overheard through the curtains. All the mothers pumped at around the same time, when the nurses were changing shifts, and due to hippa, all parents had to leave, so we didn’t overhear one nurse filling in the next nurse about someone else’s kid. So I read the same magazine as I had for weeks, there in the room, in the spot where the curtain wasn’t falling down, and I listened to all the details I wasn’t supposed to hear anyway, through a curtain in the pump room. A mother bragging that her preemie child had been spoiled by her. That the nurses said she was holding her child too much because when she had to leave, the child was inconsolable. It made her feel like a mother. She didn’t say as much to the person on the other end of her cell phone. She didn’t have to. I knew that feeling well.

It doesn’t go away. I remember all the time, our time there. I remember the names of all the nurses. I remember "firing" one nurse. Or rather, voicing our concern and putting in a request for Lori, a nurse we loved. We speak with her still. I told the parents tonight this, that they’ll make wonderful connections during all they’re going through. It’s hard not to. I hope they consider us as people they can turn to. I just want to ease their minds, to let them know, as alone as they feel in those half-hour drives home from the NICU each night, they are… and they aren’t.

This time last year I was not a wife.  I was not pregnant.  I was not a published author.  I was living in New York.  A year later and I’m living in Texas, married, published, with a son and a daughter.  One hell of a year, one even a horoscope would be pressed to predict.  And as different as my life is, I am in love with it.  I love Phil so much, love that the other day, at the hospital elevators, he pulled me into him and whispered, "I couldn’t be happier than I am right now, with you."  And I hit him for making me cry.  "Not that everything doesn’t make me cry, but still."  Then we kissed on the elevator ride down.  Then last night, there was this:

"I think it’s time to dump."
"Excuse you?"
"It is.  It’s time."
"Well can you shut the door!"  Phil won’t let me go to the bathroom with the door open.  Our bathroom is enormous, but our WC is claustrophobic.  And it’s my damn house.  I like to leave the door open.  He gasps at this, even when I’m just making a quick girl pee.  But this conversation isn’t about making.
"Well do you think we have to dump?"
"You only had two glasses of champagne."
"Yeah, but I don’t want to risk it."  We decide to dump my breast milk in fear that I might be soused.  "We’re getting those strips tomorrow," I say as he makes Jello Pudding eyes at me.  "What?  I’m getting the damn strips!"  The strips tell you if there’s any alcohol in your breast milk.  "Oooh, and let’s make brownies," I add, insisting we’ll bring at least some of them to the NICU staff.  After I eat half the tray, that is. So on this New Year’s Day, we’ll be getting some strips, some baked goods, and some matted frames (we’re framing our favorite children’s book covers as the art in the nursery).  I hope there’s a book out there about baking for children.  I don’t even like to bake, but suddenly I feel the desire to write a children’s book about a magic bakery.  All this talk of milk and brownies has gotten to my head.  Happy New Year.  I hope yours is decadent and delicious.

I’m exhausted and unsure if it’s this new medicine, taken three times a day, or if it’s my pumping every two hours (except for at night, when I sleep uninterrupted only for four hours).  When I first announced my pregnancy on this site, people wrote in, warning that I stock up on sleep, as if it worked that way.  Enjoy it now, people said.  They should have urged me to enjoy my breasts.  "Fondle yourself," you should have said because now, when we hug, I warn, "careful," as I back away.  Now one of my boobs has red inflamed bumps along the sides that itch, I’m sorry to say, like a motherfucker, and my nipples feel as if they’ve been pressed against a smoking-hot panini pan.  There’s nothing hot about motherhood.  Pregnancy, maybe, and now, aside from having vicious night sweats, I’m having sex dreams again.  My hormones are aflame, and along with wanting, and being unable to have, sex, I also want to cry at times, and just sleep for one full day, alone, taking up the whole bed.  Now here’s the real question: I know I can’t think about having intercourse for about six weeks, but what about an orgasm?  If it were written on a message board somewhere, I’d have found it by now.  Help a mother out.  Email me on it.  I’m keeping comments closed for this post, mostly because I’m now about to paste a bunch of repetitive babble, just so I have a record of it, for myself to look back on. 

Because people keep asking, in the future, you can always find new updated photos of the babes at these three links:
siblings: http://stephanieklein.blogs.com/photos/twins/
lucas: http://stephanieklein.blogs.com/photos/lucas/
abigail:  http://stephanieklein.blogs.com/photos/abigail/

Supply is Demanding:
Phil does everything.  He feeds Linus and makes sure to clean up after him, lets him out.  He makes sure I’ve eaten, sets alarms for my feedings, writes the labels of the date and time on the milk, then drives to the hospital to bring it to them.  I cry and worry.  I’m fat and want my old body back, the body I had before I got fat in the first place, my 123 lb. body.  I now weigh 156 lbs.  I weighed 172 lbs. at my last pregnant doctor’s appointment.  All I want to do is eat cheesecake and sleep.  But I can’t sleep.  I know I’ll sleep less once they’re home, but I’m not sure how to get less than I am now.  I have to pump every two hours, day and night.  Though at night I’ve been taking a break, sleeping for four hours, then pumping, then sleeping for three hours, then there’s the “power pump,” where I pump for ten minutes, instead of fifteen, then off for ten minutes, for an hour, so I pump three times in an hour.  Supply and demand sucks.

Fighting the good fight:
I wish they were home with me, to feed and hold as I wished.  Instead it’s visiting hours.  And driving.  And finding a parking space. Once they do come home, Phil and I will fight even more.  We fought today about blinds.  He was at his rope’s end and insisted he no longer wanted anything to do with making decisions.  “Why do I have to take care of everything?”  Because I just had a baby, no two babies, all by my fucking self, and I was scared, but I did it, and now I’m in pain and hate myself, and feel like everything is my fault, and I’m ugly and fat and have stretch marks on my boobs and bad clothes.  That’s why.  But the truth is, he’s been taking care of everything long before I was pregnant.  It’s the role he takes, wanting things to be his way, to the point where I just stop trying to do anything. And usually this works fine, until it doesn’t. Until he tires and frustrates and tells me I’m not an invalid and can take care of myself.  This is when the crying begins, and now, with all the hormones, it just doesn’t end.  I’m crying even as I type this. Being near him makes me cry and feel like a failure.  A walking list of everything I don’t do, do wrong, wrapped up in a sweatshirt and Adidas sneakers.  And I want to borrow his shoes and run away with them. 

When he comes into the room, I cry even more, but then he apologizes and says, “I’m new at this too.”  And we hug, carefully, and I cry, and he looks up at me and says, “I hate to say it but…”
“Time to pump?”
And he shakes his head ‘yes.’
“It feels like they’re not even mine.”  And I don’t mean just my breasts. 

I don’t care whether or not I go to the hospital today.  I will go, of course, because my brain says I have to, but the rest of me just shrugs and shakes her head ‘no.’ Then cries.  Lucas and Abigail don’t even know when I’m there.  They spend their time with nurses and think I’m just another one.  I know people argue this isn’t true, and maybe studies can back it, but it feels true.  I scrub in and bend over their isolettes, greeting each of them with a “good morning,” and maybe they stir from the noise, but they don’t know they were once inside me.  They don’t recognize my voice and find comfort in it; I don’t care what the books say.  And while I do get excited to hold them, one bottom in each of my hands, brother and sister together again, I also wonder, “what for?”  Yes, children who are held, thrive.  I want to hold them all day and night, to nuzzle them, and give them what they need.  But they’re too young to be held all day.  They need their own spaces, to be isolated from noise and voices and even me.  I know our bodies are incredible, that 48 hours in bed with my children will up my milk production, but I’m not allowed to sleep with my children.  I’m allowed to hold them, once a day, for a half hour, in a hospital room, in a rocking chair, me with these two little creatures and all their wires, spreading across the three of us like lines of a map. 

Each time I hold Lucas he has a Bradycardia episode, where his heart rate drops and he stops breathing “because of his positioning.  His airway isn’t clear when his head is dipped too forward or too far back.”  And it’s hard and wonderful holding them both together. But I fear something will happen to one of them.  We’ve already been warned of the ride we’re in for, that they’re bound to have more infections and setbacks.  Even now, when they’re doing so well, each now weighing in over three pounds, I worry that I will only take one of them home, despite all the clothes I’ve bought for each of them (ranging in 0-3 months all the way to a hopeful 12 months), their small corners in a room, decorated just for them.  A nursery, without any nursing going on. 

They don’t need me; they need my milk, and I’m not pumping enough.  It’s been two and half weeks since their birth, and my milk hasn’t fully come in.  “It sometimes takes up to a month for it to come in for twins” is a phrase I keep hearing but don’t understand.  My doctor has prescribed a drug for nausea, that’s taken for a total of three weeks, with a side effect of increased milk production “with some mothers.”  This means it doesn’t work for everyone.  “And there’s also the side effect of depression.”  Phil asks if while I’m out filling the prescription, if I wouldn’t mind also getting him a shotgun.  It’s hard enough dealing with my hormones without the added risk of depression from a pill, never mind post-partum depression (which I don’t have, not yet anyway).   

Failing at milk production is right up there with failing at reproduction.  You feel like you’re failing at being human, without the basic ability to produce… produce life, or now in my case, sustain life.  I’ll need to supplement right now, with donor milk.  When they come home, I’ll need to supplement with formula, even though I don’t want to.  I know formula isn’t the evil the La Leche fanatics make it out to be, that aside from the antibodies provided by my milk, formula can be even better.  It’s not about that, though.  It’s about wanting, so much, to feed and provide for them, to be their caretaker, completely, especially during this time when I feel, well, when I feel like I don’t even have children.

My own mother just called, wanting an update on her grandchildren.  Lucas is 3.39 lbs.  Abigail is 3.24 lbs.  It makes people feel good to hear they’re gaining weight.  My mother asks what they need.  "More milk," I respond, to which she insists I get myself some lentil soup.  "I swear," she says, "I was talking about it with Yiya last night, and you know she’s a witch doctor and knows all about these things, and she swears by lentil soup, insisting that women who eat it complain of breasts too full of milk."  I will try anything, though I’ve already been warned against the homeopathic treatments of teas (not safe with preemie babies held up in the NICU).  So here’s to lentil soup and meds that might lead to depression.  Hey, I do some of my best writing while depressed, and it’s only for three weeks.  "Well, I can’t get them milk," my mother says, "but I can get them a double jogging stroller."  And I smile, eager to go for walks with my little incubating chicken nugget children.