I have the most miserable fucking head cold right now. One that can only be treated with excessive amounts of oxycodone and cheap tequila. It is 2:30am and I’m awake sniffling to myself, creaking and watching Bad Lip Reading on YouTube (which you should really check out, just sayin’)

First off, thanks for all the wonderful notes of support – they are appreciated. But, don’t worry: I don’t think I’m a bad mother. The entry was intended as commentary on ableism and unnecessary hostility toward people who aren’t capable (due to work, disability, cost, other social obstacles etc) of keeping up to the impossible standards set for mothers to uphold. The Stepford Wife thing where you do yoga every morning after you go for a 6am run, feed your gorgeous six-thousand-dollar puffy dog and return to your pristine McMansion to get your kids to school where you volunteer in every classroom, run the PTA, bake gluten free low-cal cookies for the teachers and then talk to your friends about poor brown “those” people and their problems and how ‘fortunate’ we are to not have that here.
And don’t think I’m exaggerating, I have actually heard those conversations in the bakery on a regular basis.
We live right on the edge of the rich area in the city. To be honest I’m not entirely sure how we managed to get a place here because we’re not exactly well off, but somehow we did. It has great schools, beautiful views, a beach within walking distance, little stores, specialty shops, and lots of quaint things… but it’s also full of upper class, rich, white mothers who don’t work because they don’t have to. I’ve spent years and years here and while I absolutely love this area, it can be pretty damned annoying sometimes: I really am not the type of person who fits into that environment. I was born and raised on this tiny little hippie farming island where everyone was into vibrational medicine and shiatsu. I’m sure there are many other moms like me here, but they’re likely hiding in plain sight much like I am, which is probably why I can’t find them. There are also plenty of wonderfully nice people in this area, and by no means is it all bad, but the 90% that it’s great to be here is sometimes overshadowed by how LOUD AND OBNOXIOUS that 10% can be when it really tries hard. It’s generally easy to ignore, but as I’m sure everyone knows: when you’re having a bad day that shit tends to get to you more than it normally does, and sometimes it just doesn’t stop long enough for you to stand up and take a breath.

Ableism demands that I believe I am a bad mother, because it reminds me that women with disabilities can’t raise children or care for them effectively despite of all evidence to the contrary. I am reminded on a daily basis that able-bodied mothers are ‘superior’: by advertisement, by television shows, by lack of representation of people like me and by little “oopsies” by the community and schools. Oopies like events that take up the entire sidewalk so that people with mobility carts can’t even come in and look around, or schools that don’t make accessibility a priority and put elevator keys only accessible if you go up 1-2 flights of fucking stairs. Oopsies like having all the stores feature 3-10 steps to enter, and no ramp, so they can retain their “quaint” entrance.
The problem with ableism is that it’s insidious: if I vent about having a hard time one day all of my troubles are immediately blamed on having a disability and my choice to be a mother. Those who hold the belief that the disabled do not deserve children will always respond to a vent with, “See? You can’t handle being disabled and having kids” rather than the way they’d respond to all of their friends and family who had a bad week: “It happens to everyone, you’ll get through it”. Because when you’re disabled, your disability absolutely must be the root of every difficulty you’ve ever had, will have, or are having. It’s never life catching up with you, or normal frustrations, it’s just that darn disability getting you down.
You’re frustrated and exhausted by your kids today? Well yeah, you’re disabled and had kids, what’s wrong with you. Feeling sick two weeks in a row? Did you forget you’re disabled and had another kid? Didn’t help your kid with her homework? Um, an able-bodied mother would have… just sayin’.
The root of this prejudice comes from the same place they all do: privilege. By not living that life and understanding the most basic fucking truth about human beings – that you adapt and continue on – people assume that having a chronic illness destroys you, strips you of your humanity and leaves you inherently “less”. You’re someone to be pitied, or an example of nothing but pathetic irresponsibility by trying to live like those normal people and dare to have jobs, travel, go to school or get pregnant. And that’s also a big part of what I was talking about: it’s all bullshit, because we’re all flawed human beings regardless of our personal circumstance. Right now I’m under a phenomenal amount of stress, and I think I’m doing pretty damn good, even if the last two weeks have been particularly ridiculous.

So what have my last few weeks been like? I’ve been exhausted and in more pain than usual. The weather is changing, and for whatever reason my arthritis and joint issues act up in a huge way whenever that happens. I wake up in the morning already running on empty, and that lasts up to a few weeks before I get used to the change. Zephyra has been incredibly fussy for the last four days and I’m honestly not sure why. Is she starving? Is she uncomfortable? Is she going through a growth spurt? Is she teething? What the hell, dude, why don’t you come with a translation device? AARRGGH. It’s frustrating. It also comes on the tail end of that absolutely exhausting cleft clinic that took three hours of running from one doctor to the next while they all said, “We can’t see anything physically wrong but she’s not sucking so…?” and/or brought up her missing vaccine schedule. It was a very frustrating experience. Fortunately, we had this amazing woman (whose job I am actually in the dark about) who followed us around and was a sort of ‘organizer’ bringing everything together, and she talked with us the whole time about our experiences, validated our hard work and our concerns, helped us talk to the doctors who were unhelpful and was otherwise totally awesome. Without her the experience would have been much worse. She also emailed me afterward to tell me she’d been researching posterior and lateral tongue ties and wanted to say again how great I was doing at making it through these challenges. That felt good. It’s nice to hear someone say, “In spite of all your unique challenges, you’re doing better than most” rather than try and find fault in my every day failures.
The kids have been absolutely ridiculous. Perhaps they’re picking up on the stress, maybe it’s part of adjusting to going back to school and having a new baby, maybe they’re getting to an age where their personalities are clashing a little more than they used to, but whatever it is it’s driving me up the goddamn wall. Xan has been in the office every lunch this last week for either pushing or hitting someone. I know he can be pushy, but I also know he never instigates with violence: it’s always in response to provocation. It may not take much to provoke a four year old, but the fact remains that every time I’ve talked to him (and to Tempest, who usually witnesses it because she looks out for him, or wants to get him in trouble, either way she’s there) I find out that he’s been teased or pushed or called a name first. I’m not particularly mama bear about that, because he’s four and the other kids are four and kids argue. He’s not that bent out of shape about it, so I won’t be either, but it does irritate me that the solution to a conflict between two kids is to wait until it escalates to one pushing the other and then punish the kid who pushed without talking to them both about better conflict resolution skills.
Curtis’ schedule is hectic and he works until 6pm or later every night. This month he has to pick up a few night shifts because a large section of the lower kitchen staff is leaving and now that he’s a secondary sous he has to fill in the blanks. They’ve put an amazing amount of trust in him in very little time, and he is kind of freaked out by it as much as he’s impressed. The other day his cell rang while we were out walking and it was the supply company wanting to ask him questions about the following morning… and he had no idea what to say. That’s crazy!
My sister is having relationship problems because it’s her first time living with someone who also has problems and she calls me all the time to talk about it. I don’t mind that at all, don’t get me wrong, but I worry about her and I want her to be living here where she’s close by and she can come over and sit on my couch at 11pm at night and have a cry and a scream if that’s what she needs to get through a stupid fight with her boyfriend. I remember the first months living with Curtis, and it’s hard to get used to sharing space with another human being no matter how much you love them.
Due to my bad joints I haven’t been sleeping until 3-4am the last few nights, and up again by 7:30am, which is seriously beginning to suck.

Last night I finally let myself burst into tears and went to Curtis to cry out all my frustration, and after I was done I sat down to work through how sick I was of being exposed to ableism and hostility, but neither of those things are unique to me. None of what I outlined in the previous entry is unique to me: as shown by the dozens of notes and emails I received in the last day, (and while I don’t have the time right now to answer them all, do know that I appreciate and read each one) they are things everyone goes through. Though, when you have a shitty week sometimes you need a little reminder that you’re not the only one who experiences this crap.

Today when I woke up I felt like ass. I had all these plans for the day, and after venting for hours last night I realized that I really needed to just give myself permission to rest and not feel guilty about not accomplishing a list three miles long. So after I took the kids to school I came back, took pain medication and lay in bed doing nothing but napping and nursing for three hours. I didn’t feel tons better, because the flare-ups I have right now won’t pass for a little while, but I felt much more mentally well than I have in days.
I wanted to walk down to pick up the stroller I had on hold at the consignment store, but instead I drove, and forgave myself for not walking the 45 minutes that day. I need my spoons this week.
We ordered pizza when Curtis came home so that we could spend extra time together, we bought a new shelf for the kids and he put it together with them, letting them stay up an hour past their bedtime while I rested in the evening with my napping baby.
I successfully fed Zephyra four times at the breast, and twice with the Haberman, which is a pretty damned good day in spite of her restless behavior. I was even able to pump twice, finish three loads of laundry, and clean both the kitchen and the livingroom. Depending on how I’m feeling about myself I can view the day as a moderate success or a complete and utter failure: yesterday I would have said the latter but today I’m feeling better.

For the next month we have a dozen appointments lined up for Zephyra. Home visits, doctor visits, a swallowing study, a prep, a conference and so many fucking phone calls and emails. I can’t shake this fear that it’s all for naught, and that she’ll either magically outgrow these issues or I’ll adjust to the point where dealing with it becomes mundane and I’m magically capable enough to allow myself to get sick of this rollercoaster and drop it all. When you walk into an office fearing it’s all in your head the worst thing someone can do is tell you they think so too. I’ve spent much of this time fearing that the exhaustive work I do to keep her well fed translates to there not being any “real” issue and I’ll be told I should just continue doing what I’m doing… in spite of the fact that it’s getting more difficult to keep up with as she grows and her caloric needs increase. Fortunately no one has said that, but there have been quite a few who have been less than helpful about it.
Other than the feeding thing she’s such a happy baby. She sleeps well, she smiles all the time and is chatty, happy, giggly and ridiculously adorable at all hours of the day; she’s happier and calmer than Tempest or Xan were at this age, and I get more rest at night. If I discount the struggles with nursing, she’s been easy and I don’t have much to complain about. Though at times it seems like this issue takes up so much of my time and energy that I never get the chance to think about much else. Is she hungry? How do my breasts feel? When was the last time I pumped? Did I pump enough today and how much more should I pump to be able to match or exceed the amount she was supplemented with today? Why can’t I get a letdown? What if the chest freezer breaks? How many more milk storage bags do I have left and how much does it cost to buy a 25 pack? A 50 pack? Can I find a 100 pack? Will they ship to Canada? Will she ever get to a point where she sucks from the bottle on her own and I don’t have to pulse feed her? Does this position work better? Do formula feeding moms really go through all this trouble 8-12 times a day? How can she choke so violently when she’s just mouthing my arm?

I didn’t actually intend for this to be so complainy either, but I suppose I still have things to vent about. In spite of it all, I feel like I’m doing alright. At the very least, with all of my “unique” challenges, and being a disabled mother, I’ve done a fucking kickass job getting this far.

Links of the Day:
How many continents are there? – Either much less, or way way more, than you thought there were. This is interesting, you need to watch it. Also funny.
Tom Selleck’s moustache – Says the author, “Everyone knows that the greatest and most iconic contribution to Cinema is Tom Selleck’s Moustache. So great is it that there isn’t a single film that would not be imroved by the inclusion of Tom Selleck’s Moustache. As proof I present this montage”.
You can get laid without being a jerk – A big sister’s letter to her little brother as he enters college, laying out sexuality and consent in a frank and wonderful manner. I want to save this and show it to my son when he gets to be a teenager.

Comments

comments

33 Comments

  • Anonymous says:

    Hang in there, you’re doing amazing!

    I’ve been reading in spurts since I was on bed rest before I had my son in June. I’m able-bodied, but I don’t get nearly as much done in a day as you do. You are seriously kicking ass, even on your off days.

    As for your question, “Do formula feeding moms really go through all this trouble 8-12 times a day?” …my answer is no. Not even close. I have PCOS, and I knew it could affect my milk supply. It did, so for nearly a month we went through the combo feeding gambit. Breastfeed for as long as he was willing to try (never long because he’d get frustrated at my lack of milk and because he has reflux and the nursing positions that worked to keep the nipple in his mouth had him too flat, so he’d vomit). Then feed the pumped milk from the last pumping session. Then finish with formula because he was always still hungry. Then get the baby calm enough to set him down so I could pump. Then pump for 45 minutes to get anything between 1/3 of an ounce – 2 ounces total. Then wash and sterilize the pump parts and the bottles, and by then he’d be hungry again and the whole thing started over. It was around the fucking clock brutal. What you’re doing is way, way harder than plain old formula feeding. The fact that you get anything else done in a day simply amazes me.

  • Anonymous says:

    Even if you weren’t disabled, they’d find something else to judge you for. Some (most?) women are catty bitches who aren’t happy unless they’re bashing somebody else. And yes, I’m a woman…I just don’t care for other women, lol.

    One of my friends just posted this on facebook, and it TOTALLY made me think about you. I realize it’s about a disabled child, but…same difference (same ableism):

    http://specialneedsmom.typepad.com/special_needs_mom/2011/10/to-the-author-of-the-anonymous-note-left-on-my-car-windos.html

  • Anonymous says:

    You Have A Point

    I have been thinking about what you wrote about my questions and I agree that you have a point. I don’t think that I would have asked someone else why they had children. I also agree that “I” (meaning me and other people without disabilities) enjoy priviledges that you do not.

    I am not asking for a “good for you” or anything else, I just want to say that you have a point.

    • admin says:

      Re: You Have A Point

      I’m glad you’re finally realizing that you have able-bodied privilege, and have made some seriously offensive judgments about parents/people with disabilities. I hope you continue to learn.

  • jadethe2nd says:

    A lot of this reminds me of some people’s attitudes toward single parents — especially ones like me who “couldn’t keep their legs closed and didn’t have an abortion”, as I saw some guy put it.

    Just because we have chosen to do something more difficult than the norm, we are expected to pretend that it isn’t difficult. And even difficulties which are “normal” are blamed on the fact that we are single parents/disabled parents/otherwise non-stereotypical.

    People are assholes.

    (You however are awesome šŸ™‚ )

    • admin says:

      That’s a very good point; if you are a single mother by choice you get a lot of judgment from people about it… even though there are so many more resources now than there used to be (even 10 years ago) and you cannot know someone’s situation until you’ve lived their lives. Just because YOU couldn’t handle being a single parent doesn’t mean everyone can’t. And the truth is, just as with any unexpected twist, you adapt. You always do.

  • runwithyou says:

    I have been a quiet reader but this sentence, “When you walk into an office fearing it’s all in your head the worst thing someone can do is tell you they think so too” stands out so much to me.

    My daughter is 16 months old and we have been going through all sorts of issues around food, eating, sucking, reflux, and sleep since she was born. Sometimes I start to believe that these things are in my head and then when some doctor tells me they think I am basically crazy, it is the worst feeling in the world. We FINALLY, FINALLY have referrals to doctors who are interested in her case and would like to help provide us with some answers. But thank you for that line. It helps to know I am not the only one.

  • I don’t know you personally, but from what I’ve read, you are an amazing mom. Screw all those other moms who might think you aren’t doing enough. I know, from my personal experience with having a brain injury and now depression how hard it is for people to understand an invisible disability. I’ve learned (okay, I’m still trying to learn) to stop taking it personally when people don’t understand why I can’t keep up with everything. I find that your posts inspire me. I really love your honesty.

  • Not only are you a kick ass mom, but you are an inspiration for people too. I know that sometimes that is weird, but you have an amazing following of people who look to you and you might just be the only person telling them it is OK to feel this way sometimes. Just by finding your blog I have learned so much about homebirth, unassisted pregnancy, parenting, pain and pain management, things to take to my doctor (still figuring out if its fibromyalsia (sp?) or something else, but with what you’ve posted we’re looking into it now), etc.

  • you are fantastic all over the place

    Know, please know that you are my role model. I’m a person with a disability and I live just out of poverty’s reach. I often get sucked into believing the “you can’t be a mother” message that those of privilege like to shout in my face. I think my age and my issues would make me a really shitty mother when I’m weak enough to take their message to heart. It’s so fucking sweet to hear that there is a way and it is possible. Your message is so important to me. So. Important. In just two blog posts you’ve done more for me than I can express. You open up new worlds, possible realities and you always open my mind. Please accept my gratitude.

  • imperfectme says:

    You ARE doing a kickass job. And this might not help much because it’s a while away, but at the least the feeding problems will get better when she starts solids. Solids, even purees or yogurt, are so much easier to deal with in the mouth than liquids. I say this while sitting here watching my previously 100% tube fed child (because she eventually gave up even trying to nurse :\) eating a pepper and tomatoes and noodles and cheese. I never thought it would happen for Molly, but it did, and it will for Zephyra too. Hang in there. šŸ™‚

    • admin says:

      Thank you. This really helps…

      • Anonymous says:

        If solids are easier, would breastmilk yogurt be an option? I was going to attempt to make this when my daughter was only 4 months and was shaking she wanted to eat solids so bad. I ended up not being able to because I can’t let down to a pump, but from what I read it’s totally possible to do with breastmilk. You just need a starter, and I like to use a yogurt maker because it’s easier, but there are other ways to do it like a stove or a crockpot.

        Also, I have a bunch of bags to store breastmilk if you want them. I thought I was going to pump this time, but I couldn’t get it to work out. I ordered these bags that you are supposed to be able to hook up right to the pump, but they didn’t work at all (lots of spilling). I imagine they would still work to store milk though, they just look a little weird. I don’t know the cheapest way to ship, I’m in the US. Let me know if you want them.

        • admin says:

          I’m not comfortable giving her solids, in any form, before her gut is mature. Among other things, the choking risk is high and she already has a hard enough time.

          Thank you for the bag offer, but I actually got an offer of 350 from another user and I think that’ll probably get me through. šŸ™‚

          • Anonymous says:

            You know, I thought that all that was in yogurt starter was probiotics, but when I just checked there is skim milk powder. I didn’t know that – glad I never attempted it and just held my daughter off of solids for as long as I could. I wonder if there is a starter that just has the probiotics (and the yogurt itself could be used as a starter after that) because then all it would be is breastmilk and probiotics, and I don’t think that would cause gut issues as probiotics are what is in breastmilk that prevents gut issues. I was thinking you would mix it with breastmilk and use it more like a thickener and not just give it to her straight. Not that I’m trying to push my idea, I totally get not wanting to give her anything except pure breastmilk. I had to give my daughter probiotics mixed with breastmilk for a health condition and it was so strange giving her a bottle of something that didn’t totally come from me when she was so little. I didn’t like the idea either, but knew it might help her out and we would avoid long-term antibiotics.

  • Anonymous says:

    I saw this article in my local newspaper, and thought of you. I too suffer from chronic pain and know entirely too well what it’s like to not have enough spoons on any given day.. Chronic pain is entirely too invisible, and it’s too dammned hard to get help.http://www.ottawacitizen.com/health/pain/live+this+life+pain+Canadians+with+chronic+pain+struggling+find+help/5485126/story.html

  • Anonymous says:

    I live in an area that’s just like yours, the school is centred in the heart of the richest area. I hate going there picking up my kids because they all don’t work because they don’t need to work. I work. I work at a local grocery store making ends just meet while my husband goes to school and completes his degree in UNI. It’s hard but it sucks, because they all drive, and i don’t. I ride the bus. They all say “why don’t we meet there, at such and such place” I pipe up, “i don’t have a car” they all stop and stair at me like I have the plague. “you don’t?” I shake my head. “no, is that a bad thing?” them “how do you get around?” me, “by walking and or riding the bus” that to them is lower class stuff. I sigh and say “well, time to go,” it feels so shitty. So I know how or where you’re coming from.

    I’m on the PAC though because I am their hot lunch lady. I’m trying hard to change it. Feeding kids pizza, and or Subway isn’t healthy at all. They want this new hot lunch menu with Mr. Noodles. How the fuck is that healthy. I realize that the rich moms don’t care what they pay for their kids to have a hot lunch as long as they don’t have to make it.

    It’s not their issue anyways, their freaking maids/help does the job for them.

    Sigh. ok my rant is off.

    BTW, we all at times feel like we’re a shitty parent. You’re not alone. But we’re not shitty, we’re probably better off then the rich parents are.

  • azdesertrose says:

    Being sick on top of everything else just sucks. I hope the cold goes away soon.

    I think, all things considered, that you are indeed doing a fucking kickass job with it all.

    *hugs* if welcome

  • devilgrrl says:

    If you can’t find bags that’ll ship to Canada, I have a ridiculous surplus of Lansinohs. My kid’s a year old and I rarely need to pump these days, so I don’t need them taking up space anymore.

    • admin says:

      I can find the bags locally, they just cost an arm and a leg. If you’re willing to give up your lansinoh breastmilk bags, I’d be happy to take them. šŸ™‚

      • devilgrrl says:

        They’re yours. I have way more than I could ever even think about using. I can mail them out Friday and get a confirmation number for you. Would you be okay covering shipping?

        ETA: If you don’t mind them without the outer boxes, I can probably squeeze them in a flat rate envelope.

        • admin says:

          Totally, on both counts. I think I still have some in my Paypal. Email me using the ‘communicate’ link on the sidebar. šŸ™‚

          • devilgrrl says:

            Shall do now. I’ll put Lansinoh in the subject.

            • admin says:

              I just got them. HOLEEEE SHIIIIT there are so many bags! I can’t even begin to tell you how amazing this is. thank you so much. They work so much better than what I was using before, they hold more, they freeze better, they’re easier to use… Thank you thank you. If I go through them at my average of 3 a day, these will last me over six months – until she’s a year old! At which point we probably won’t need to be going through them that quickly. Thank you thank you.

  • gardenmama says:

    Surround yourself with people who care about you, and screw the rest.

    The only person qualified to judge your parenting skills is yourself.

    Every mom is a shitty mom sometimes.

    Parenting is like triage, you have to decide what’s the most important thing and deal with that. Some days, that’s the only thing you do – and that’s ok!

  • marbyco says:

    If your chest freezer breaks, you will take your milk baggies to my house and dump them in MY chest freezer. The end.

    Also, LET ME TAKE YOUR CHILDREN. Seriously. I have random days off in the middle of the week. I have every other weekend off or something similar. I have a huge back yard and a large playroom in the basement that comes with toys and books already in it. I have bus tickets! Let us take them so you have a day with just the baby, or a day with the baby and Curtis. I live next to a rec centre and two parks and an ice rink. And an awesome frozen yogurt place. We can occupy them for hours.

    • admin says:

      I love you, and I so appreciate this, and I kow I’d be barking the same thing in your ear in a few years time when it’s you (and yes, it will be you).

      At the same time it feels weird to just… bum off my kids on someone else when I’m perfectly capable of caring for them myself, you know? I know sometimes it’s needed, and you guys are their aunties and they LOVE you, but it’s… weird for me to be all, “I’m going to have someone babysit for NO REASON AT ALL!”.

  • Anonymous says:

    Still waiting…

    I keep waiting to find the other mothers who are like me. I’m a visible minority in a very white community. My kid went to a preschool that was pretty much all white, so for kindergarten we switched to a “diverse” school. Yeah, it’s still pretty much all white. All the “good” kids and “good” moms are white, all the “diverse” kids are pitied. But I don’t fit into either group, so basically I just stand there like an idiot.

    I got chastised for not volunteering, even after explaining that my five year old (who does very well in school) can’t function when I’m around. He tries to talk to me, hug me, and generally just not pay attention. This happened in preschool, so I decided to take a step back so it doesn’t happen now. But no one understands that. I’m just the lazy brown mom who’s not trying hard enough.

    I’m so fucking over it, and this entry makes me feel like I’m not crazy. Whenever I pick my kid up at school I feel like I’m in the twilight zone.

    Funny thing? All these awesome stay at home moms who look down on my because I’m a stay at home mom who doesn’t troll the school constantly? Don’t realize I have a fucking PhD. They treat me like I don’t even speak English.

  • Crap, I really want to leave some insightful, touching reply but I keep worrying it’s going to come across as stupid or similar.

    Screw it, pregnancy has eaten my brain. I think you are one tough cookie, and your kids have a beautiful set of role models in their parents.

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