parenthood


I am constantly learning that for most non-disabled folks the default mindset regarding disability is tragedy. There seems to be some kind of genetic need to understand difference as abhorrent and wheelchairs as the symbol of captivity. I keep running in to these attitudes, the attitudes that completely shore up the hierarchy between those who walk and those who roll, or those who talk and those who sign, or those who think quickly and those who ponder slowly, or those who love chaos and those who require sameness. A hierarchy that leaves one feeling somewhat pleased to simply not be the other. And it always surprises me.

-Dave Hingsburger

I don’t have the energy or, frankly, the time… or the calm, measured but kind words that would be necessary to really do this justice, but I am probably going to be writing a series of posts about the response my disabilites have elicited in my new environment.  I’m not in NYC anymore, but a smaller city, studying at a divinity school attached to major Ivy League university.  It’s nice here. 

But people at divinity schools have a different way of dealing with the direct visual experience of another’s disability (than do solipsistic undergrads at big urban universities, for instance), and I’m finding that I have none of the tools to navigate this.  I am, to put it quite bluntly, finding myself utterly worn to a frazzle by the solicitous care, concern and curiosity of genuinely good, kind, compassionate people into whose sense of mission and calling I fit precisely into a prescribed role. 

This is often a role that (as the readers of this profanity-laced and often immature collection of rants will immediately recognize) I have some trouble fitting into–and I’m not really sure that I want to.

I’ll have to write more on this in the time to come.  For now, suffice it to say that I’m in the market for new ideas on how to nicely (that’s important, everyone is nice here, the Waif is not so nice, so this  requires careful planning) send off signals that I don’t want to be approached–because one of the interesting side effects of the disabled-person-as-object-of-mercy model is that normal social rules of approach are suspended.  If I’m using my wheelchair, I eat my lunch with a book in front of my face to ward off the smiles, pats on the back, strokes on the arm, and “oh honey–not a good day today?”s that come my way.  It doesn’t work.  Nothing works. 

I will not quit smoking.  It has become the only way for me to take a moment outside in my chair without the deluge of offers of help.

Of course, like any struggling grad-student-parent-with-a-preteen-and-a-toddler, I’d LOVE some help, but not in the ways they mean.  They’re lovely people, the pastors-of-tomorrow who approach me, and I’d trust them anywhere–so I’m seriously considering hitting them up for babysitting when they come rushing up with their offers of assistance.

Either they start steering clear of me lest they be put on the spot, or I get some free childcare.  WIN-WIN, right?

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I just saw a friend of mine off, taking a nice open-moonroof windy evening ride down the West Side Highway. She’d come up to help me get through this last attack. We hadn’t seen each other in ten years.

One week ago, I did the thing that everyone is always saying to do, rule number one, don’t be afraid to ask for help. I did. I was at the end of my tether. It was the middle of the night, the pain was really bad, I was in The Chair (that’s the hideously uncomfortable armchair I get stuck in when I’m ill) and couldn’t get up, my husband was on Round Thirty-Five or so of the Dicked-Up FMLA Drama he’s been dealing with at work, and I had no clue whatsoever how I was going to manage the week, go back to school, or get those damn steroids, nevermind simple things like eat or take care of my children.

I put out a Distress Call. Maybe someone reading this even got it. A few sentences, a BCC to the entire “friends” list in my address book. Which resulted in some expected and unexpected offers of assistance, some from pretty far away.

I was terrified about the idea of having someone to stay in my house. I don’t really have friends, really… or rather I do, but not in the “come to my house!” sort of way, more in the I-commented-back-on-facebook-last-month-so-you-must-know-I-care sort of way. I actually met this friend of mine, Miss X, when we both were little La Leche League punk-rock chicks, with our scruffy soulful babies and copies of The Continuum Concept. We met via a parenting email list and immediately bonded as the only non-older, non-upwardly-mobile parents on said list. We met up in an equidistant city with the kids, and kept sporadically in touch. Fast-forward a few years, some really bad times in both our lives, MySpace, and a phone call or two. And then, she was offering to get on a bus and come two states over to help me out with the kids while I had steroids and got better. What’s even more surprising is that I said yes.

For the past few minutes, I’ve been trying to compose my statement of gratitude, because while the help was priceless (and–most rare and wonderful of all–unobtrusive) the simple act of friendship was stunning. Thank you. For three days I shared my space while recovering, and I couldn’t in a million years have imagined that would have worked out.

I was reading Elizabeth’s recent post on death, which struck a chord with a lot of people, and it got me thinking about this whole blogging thing, which I do on rather a smaller scale than a lot of disability bloggers but enough to now “know” people that I don’t know in real life who, seemingly, care enough about me to worry and offer good wishes. And I wonder sometimes if part of the compulsion to not only keep writing but to keep reading, to see what everyone is doing today, is about. I want someone to know if I let go and slip under, if Elizabeth does. I want it to be important enough for someone to say hey! where is she? can I do something? And yes, I suppose if that means I have to join the human race for a while, then so be it.

Save me, O God,
for the waters have come up to my neck.
I sink in deep mire,
where there is no foothold;
I have come into deep waters,
and the flood sweeps over me.

I’m not very good with people. But if this does happen to me, I want someone to see.


That was a nice run, right? Eight months remission? Oh, baby.

At least I can administer my own methylprednisone infusions. So sexy.

No, but what is sexy is the Colours Razorblade I ordered. Wheelchair users know what I mean, the rest of you are like “huh?” That’s all right. Super-short frame for little old me, super strength Twister wheels, bright green with black flame upholstery (because I am a GIRL and CARE about such things) and it’s as cute as a little button. Also like me. Natch.

The kids are lovely. Older one is working us hard for a nose peircing. I have no real urge to say no, since in my book it’s basically the same as the ears. I also think, to put it delicately, that the girl is going through puberty. She’s worried about her skin, she’s worried about her hair. She’s an emotional rollercoaster. If this makes her feel utterly fucking beautiful, if this is her way of feeling like the Queen of the May, I say why not.

The little guy is just fat and happy. As it should be.

The husband. The husband is more of less being subjected to a campaign of hostility and degradation at work. They’re pretty sure that the FMLA is something he invented, just to piss them off. He’s in the market and we’re keeping our fingers crossed.

So, to sum up, I’m un-remittant, fairly un-repentant, have a heplock in my arm and spiffy new Provigil prescription, as well as a whole big shiny new dose of Ambition, that I never had before, that I really want to talk about, since it put in its appearance just as my health went to shit. Should I post sexy infusion pics, like Jen used to?

Maybe. Watch this space.

<img src=”DSCN2385” alt=”” />
description: A photo of me, wearing my sleeping son in a leopard-print sling, handing out flyers at a recent nurse-in… actually the nurse-in so publically scorned by Bill Maher. Douchebag.

I am so utterly beyond thrilled to have found the forums at The Baby Wearer. Particularly because there’s a forum that focuses on wearing one’s baby when one has a chronic illness or debilitating condition (or when the baby does). Apparently, if people can be complete jackasses when they see a relatively young woman park a car with a handicapped placard, that’s nothing to their response when said woman slings a baby onto her back.

The cultural bias in favor of strollers ignores the fact that toting around one of those behemoths would be the end of many a sickie mom. Nevermind the positive aspects of babywearing, which I strongly believe in–it simply wouldn’t work for me to tote around a Bugaboo or MacLaren. My hands don’t grip well enough, I de-stabilize the thing by leaning on it, and mostly because I travel light. Don’t even get me started on one of those bucket seats. I couldn’t even fathom lugging around something like that before I got sick.

Now, my new favorite pains in the ass might be the people who feel that it isn’t “safe” for me to wear the baby. I’d be more inclined to listen to these types if their objection weren’t to the baby’s being safely nestled in the sling, because it’s true that sometimes I feel a little off about carrying the baby, due to arm weakness. Which is why the sling is such a joy. And seriously, if I’m not well enough to sling him, it generally means I’m not well enough to be up and about with him anyway. And supposing the gait problems were to flare up again, well, then I suppose I’d wear the baby in the wheelchair… it’s a pretty common solution to that particular problem, really.

Of course, I’m persona non grata among able-bodied moms who find babywearing “too hard,” because my very existence is a reproach. I have a debilitating, fatiguing illness, and find babywearing as easy as eating. Which basically means that these women didn’t really want to babywear, very much*. It’s like a woman I know, who has lupus and who also works out to a point of dieseled physical perfection that makes me question my sexuality. I don’t claim to know her whole constellation of reasons for working out, but I’m pretty sure that one of them is simply: because she still can. Lupus is a bitch. I’m sure when people moan about how they’d go to the gym if they weren’t feeling so crappy after their long day at work, they don’t have lupus in mind. And yet. Somehow she manages, and probably couldn’t do without it.

Baby care with MS is like that, in general. I couldn’t do otherwise, and the questioning about whether I don’t find nursing/babywearing/nighttime parenting stuff “too tiring” aren’t really relevant to my reality–if you want to help, help me do laundry or something, but please don’t lecture me about how I should be parenting in order to be easy on myself. I am. I just wore the baby through my most recent flare-up, and didn’t feel like a martyr. I do the best I can with what I still have, and I don’t feel I have to give that up.

* Should a close friend who reads my blog think that this is about her, it isn’t. You’ve never given me grief about babywearing, and you’re too hard on yourself in general. You taught me how to use a wrap. You’re lovely.


Image: As pregnant as it gets; the Retired Waif reclining in active labor.
I had had such a series of false alarms, had called my husband home from work so many times, had walked to keep contractions going or had a glass of wine to get them to stop so many times, that unfortunately I can’t really say that I “just knew” that was the day. I’d like to. I’d like to have some kind of bad-ass super-cool psychic-powers birth story as befits me, and the baby, and this awesome blog, and all that. Alas.

I was pretty damned determined that that would be the day, though. I’d been having spaced-out, stop-and-start labor for weeks, you see, and not knowing what to expect was driving us nearly out of our minds. There isn’t any real way to pinpoint the true “beginning” of labor, in this case.  I groused around the house.  He called out from work.  We waited through the afternoon.

I remember the first contraction that nearly knocked me down, though. Laugh if you like, but I was letting my hormones lead the way and baking a cake in early labor (seven-thirty at night or so). My husband was timing the contractions–funny, because I had been quite scornful of his utterly-male desire to time contractions during a homebirth…. (whatever for?) When it happened, though, we both found we really enjoyed the timing and making notes as the rhythm of the whole thing established itself.

My daughter had planned to attend the birth. I left the option open, and certainly had no plans to exclude her, but let her know that the instant things got at all scary, or boring, or weird, she had but to say the word and grandma would swoop her away to be pampered in Westchester. She saw which way the wind was blowing at eight o’clock or so, and made a graceful exit. I’m terribly glad about that–I actually think she might have suffered some trauma if she’d stayed.

The next hour or so were passed with my husband reading aloud (not Graham Greene for once, although The Quiet American once got me through a miserable hospital stay). He’s a marvelous reader, but it became hard to concentrate. It was impossible to either move or stay still.  Our midwife arrived, followed shortly by our doula, at around ten o’clock. The doula brought some white daisies that stand out particularly in my memory. I had chosen her for a doula because she’s someone I see as the opposite of invasive, and also because she’s very pretty, in a calming sort of way. It was nice to see her.

The midwife and doula went to rest, and my husband talked me through labor for an hour or so. At this point I should have realized that a certain amount of shutting down was going to be the best way to get through this; rather than try to do anything I made myself as still as possible and stared into his eyes and listened to his voice. I’d had no idea how to prepare for labor, and I’d later realize that the times I was able to withdraw were the only times I could really cope.

It was a very rapid labor, and felt very out of control. At a certain point I broke away from my husband and stood under the hot shower–painfully hot water was the only thing I wanted to feel at the time, but heat causes some dreadful MS symptoms for me, so I would stand under the shower until I got too weak to hold myself upright, drag myself back to the bedroom, and wait to regain strength to stand under the shower again.  I was unable to simultaneously deal with the people around me and the pain I was in. I spent a lot of time kneeling, with my husband pressing a hot water bottle into my back. That was nice. But there were too many people…

At about midnight, I remember crawling onto the bed, curling up, and closing my eyes.  Somehow, more than three hours passed, during which everyone else slept and I crouched perfectly still, with my eyes closed.  A non-verbal state was the only possible way I could have done it, and in retrospect it’s a state I should have stayed in.  Labor pain was utterly different in this state–I could actually follow the ebb and flow, the swelling and receding, rather than being completely overwhelmed.

The pain subsided somewhat, and was replaced by pressure, not unbearable, and a feeling of heaviness. I slept for a little while–and I remember the pressure growing, getting more intense, and becoming pain again.  I wasn’t ready for it, I started making noises, my husband came into the room and suddenly everyone was in the room.

It was here that I completely and utterly lost it.

I knew I was about to have the baby, could tell that I was about to have the baby, and couldn’t quite seem to make that clear.  The midwife and I got into a completely pointless argument about a hospital transfer, an internal exam, and other things.  I infuriated her so much she stormed out of the room.  I think she knew the baby was moments away from being born and was frustrated that I seemed to have completely lost focus?  I don’t know.

I took another trip to the shower, now beginning to involuntarily start pushing the baby out.  Going back into the bedroom, I was suddenly sick.  Water broke.  I dropped onto my knees next to the bed, reached down to feel him crowning, and was able to deliver his head–and two or three seconds later, the rest of him.

Image: black-and-white photograph of a new baby.

I remember looking over my left shoulder (the midwife had gently laid him down next to me on a towel) and seeing that he was a boy, that he had a funny little beak of an upper lip, and that he was most definitely alive.

Many, many different levels of relief.

Someone told my husband “You have a boy.”  My husband repeated “I have a boy?” with a crack in his voice, sounding like a boy himself.  Sitting on the bed, which I was kneeling next to, he told me later that I looked “very frail.”

So quickly, I had the baby in my arms.

Image:  New baby, new baby, new baby.  Squished face, wet skin, mama’s hand stroking his cheek.

I held him and stared at him.  He wasn’t ready to nurse yet.  The placenta delivered smoothly, I seemed in fine shape,  my husband held the baby while I showered.  I’m so happy I have pictures of those moments.

After the shower, bed.  Nursing, newborn exam, and a few hours sleep before the family started knocking on the door.

No, my little one is not here yet.

Katie McCarron’s fifth birthday would have been today.

As I’m waiting for my own child, I can only hope to be blessed with a child as wonderful and precious as Katie was.

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