ANDMom

Mom Un-friendly

Two things came up in the past day regarding the so-called “Baby-Friendly” initiatives in hospitals, and while I am so beyond childbearing, I can’t help but be pissed off by them.

The first was a friend posting an article about the move towards eliminating well-baby nurseries from local hospitals. This is to promote (read: force) rooming-in, which in turn is supposed to help breastfeeding rates. In short, there IS no nursery to which to send your (healthy) baby. Period. Your baby stays with you. End of discussion. If you get a “nice” nurse who “breaks the rules”, she’ll maybe take your baby to the nurses station for a little while.

On the post, her friends were all “why would you ever send your baby to a nursery. Baby NEEDS to be with mom!” and “wah, poor women who need a break an hour after giving birth”.

I maybe snapped a little.

I couldn’t care for N after he was born. Flat-out not my choice, could not happen. I had just had major surgery, which is reason enough. But then because I had placenta acreta (borderline increta – I don’t know how I even still have a uterus), it was a complicated surgery, with some post-partum hemorrhage to boot. There were two kids at home to be taken care of too, so there was no one to stay with me overnight. Without a well-baby nursery, what would have happened?

Well, I wouldn’t have gotten those few hours of rest that allowed my body to start recovering. I would have had to listen to my baby cry while I waited for a nurse to come, because I couldn’t get out of bed until about 18 hours after he was born.

The nurses knew I could not. The nurses took him to the nursery each night after my husband left. They gave me those 3 nights of rest so that when I got home I COULD do it. They treated me like I mattered too. They treated us as a pair, looking out for our mutual health and safety – I was not left alone with him *at all* until I proved I was strong enough to care for him.

Without a nursery, the most a helpful nurse can do is take them to the non-secure nurses station, where they may be exposed to all manner of germs. How is that a good solution?

Yes, rooming in is great when it’s what the parents want to do. But can we all recognize that childbirth is a widely variable situation? It’s a physical trauma. Some women have been awake over 24 hours. Some are on pain killers. Some just had surgery. Everyone is going to react differently.

If a woman was at home, with a husband or mother or friend, she can be sent off to sleep and shower while someone else kept an eye on the baby. Why in a hospital if you ask for someone else to keep an eye on your child for a couple of hours are you branded a bad mother now?

Oh right, because the end-all and be-all is now breastfeeding, and if you don’t room in, you might not respond to every whimper with your boob. Which, breastfeeding is great and all but ..

Then comes the other incident. My cousin just had a baby. Breastfeeding is going poorly. She has post-partum depression going on already, but the L&D and maternity nurses as well as the lactation consultants made her PROMISE not to give up on breastfeeding. So she feels guilty for thinking about stopping. Guilty for supplementing, even though the child’s doctor says he needs more than she can provide. Like a failure because if she just worked hard enough ..

Why do we do this to women? What end is this serving? She had risk factors for breastfeeding not working going INTO it, why ever feed her the information that it’s normal and natural and everyone can do it if they try hard enough?

Why is it so hard to have an honest fucking discussion? “Look, if you want to try, we will support you in every way we can. But it may not work – sometimes it doesn’t, and you have XYZ signs that it may not. You may need to reframe your goals to partial feeding, or you may decide at some point to go fully to formula. Whatever your goals are, we are here to help you.” Is that too hard to say? Or just not meeting some agenda?

We had a nice talk, which by some camps is bound to be construed as anti-breastfeeding. But it’s not. It’s just saying you know, you matter too. Parenting – life, really – is about deciding which battles to fight, because you can’t fight them all. Keep it in perspective and know that there is no shame or guilt in recognizing your personal limits. Make sure what you’re doing is worth it to you.

I hope she heard me, because god knows someone needed to say it.

Why does “baby friendly” seem to mean mom unfriendly?

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On Intimacy

I had one of the most traumatic doctor’s appointments yesterday, which is saying something for an infertile woman that has had her cervix in the spiked grips of the tenaculum without anesthesia.

It was meant to be an annual physical with my PCP. Check my blood pressure (which has been high of late), talk about my thyroid and inability to find an endocrinologist who’s worth anything. Why I’m freezing, exhausted, and aching all the time. I’m pretty sure at 35 you’re not supposed to groan and moan every time you need to stand up. It turned ugly, and none of these things were discussed.

She discovered that I hadn’t been to the gyn in 3 years. Before anyone thinks I’m neglecting my nether regions, my PCP has done breast exams, while the RE does pelvic u/s 1-2 times a year, and every pap smear ever has been fine, putting me in the low risk repeat every 3-5 years category. So. It simply hasn’t been necessary. But she said I HAD to have a pap done because … what, I don’t know. She kept pushing and bullying and … I gave in.

Never give in, it only leads to bad places.

So, there I am, mostly naked and feet in stirrups once again. And she tried to get started and I basically screamed and scuttled away, because fuck it hurt. Because that’s how my body is. 4 surgeries, and 18 years of aggressively active endo later, it fucking hurts. I can’t be touched beneath the belly button without wincing. I can’t wear fitted-waist pants. And it hurts for someone to stick something large into my vagina, especially when they fail to acknowledge it’s going to hurt and just kind of have at.

So anyways, it finally gets done and the swab comes out absolutely dripping in blood. I am streaming blood. She asks about my sex life and says “this isn’t your endo, you’re just too tense. You need to relax.” Blows me off about omg why the fuck am I bleeding like that – because it was not a couple spots, it was an active flow, to continue lecturing me about the importance of sex to men and marriage, so I need to “get over it”, whether that entails popping some xanax pre-sex or undergoing behavioral therapy. “Maybe you’ve had some bad experience that makes you fear it and you need to talk about it.” Otherwise, my marriage is doomed, as my husband will leave me for a woman who will put out without all this drama.

Contrast this with my RE, who, while also obsessed with my sex life, does so out of concern for *me*, not my husband. How can he help make it ok for *me*. Me, his patient. Me, the one who is biting her hand crying during an exam. Acknowledging that it may never be ok. Telling my husband to be gentle, because it is *not my fault*.

My PCP thinks it’s not the aggressive endo that is on my ovaries, tubes, outer surface of my uterus, bowl walls, rectum, presumably my bladder, and suspected in my cervix and vaginal walls. It’s a pervasive bitch of a disease. She did something so awful that I bled for upwards of 12 hours – me, with the cervix of steel that will not yield under any amount of pressure. She told me, it’s all in my head.

I drove home, on the verge of tears, and limped over to the couch clutching my cramping uterus. I fell into my husband’s arms and told him the whole story. “She thinks you’re going to leave me.”

“I’m not going to leave you. I’m going to go get you some ibuprofen and then make you lunch.”

Because that is intimacy. Being able to tell a whole sordid tale while someone strokes your head and lovingly takes care of you.

Being hugely pregnant and having someone wash your hair and help you bathe, because you physically cannot reach anymore.

Being post-op and being propped with pillows all around, the remote in reach.

Moaning in the grips of an endless stomach ache and having them come physically in to rub your back and bring you warm packs and water and whatever else you need, because there is absolutely no experience you cannot share.

Writing random notes and texts midday just to say you love them.

Bringing them home a small gift from the store – even just their favorite candy, or funny boxer shorts.

Finishing each other’s sentences – and sandwiches.

Communicating with only your eyes, both sure in your understanding of the other.

Marriage, and intimacy, are so much more than sex. If sex is the cornerstone of your marriage, your marriage is doomed to fail. Yes, it can be nice, and it can be enjoyable, and when it is, people enjoy it and good for them. But if you rely on it? Can’t survive without it? Would expect your partner to “suck it up” and go along with it all the time just because *you* “need” it? What kind of marriage is that?

Yesterday, I was angry at her. Today, I am sad for her. I am sad that she believes it is the woman’s job to “get over it” in order to “please her man”. My feelings matter. My body matters. I am important. HE believes I am important, and I matter. We will continue moving forward in this amazing partnership with respect and love, finding what works for us.

And I will be finding a new PCP.

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Perspectives

In the past several months, my vision had really started to bother me. The blurriness, the headaches. Combined with my sudden onset of insanely high blood pressure, it seemed prudent to face one of my bigger fears and get my eyes checked. Naturally I walked away with a prescription for glasses (because at almost 36, my vision wasn’t going to be perfect), but oddly, it was largely for astigmatism which you’re not really supposed to develop as an adult.

I picked up my glasses yesterday, and the entire world looks like it’s being viewed through a fun-house mirror. I feel about 2 feet tall, and the ground slopes alarmingly. It’s an odd perspective on the world, everything different than it was before.

New Years is rather like that, throwing the past year into the stark relief of highs and lows. What is it about a change in calendar that makes us mesh the previous 365 days, as if the artificial construct of the calendar truly defines anything?

In any case, 2015 was a year. That’s all. There was good, and there was bad, and I think, if pressed, I’d give the win to the good with our Disney trip and my writing job. Things don’t seem as heavy, somehow, this year.

I hope to walk into 2016 with a new perspective (and not the fun-house mirror style, egads is this normal?). I want to be able to look at the past knowing it turned out ok, and walk into the future not feeling as though if I let my guard down for a second it will all fall apart. I want to breathe more. And I want to take care of me.

That last bit may be the hardest of all because I’m so in the habit of coming last. Why am I always last, when this family cannot function without me? The kids aren’t babies anymore, and only by shifting my perspective will they start to realize that I matter, too. I haven’t worked it all out yet, but I’m going to. I want to feel better. I want to stop putting up with things that bother me just because it’s easier.

So, goodbye 2015, and thank you. Hello 2016, please be kind.

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Never Easier

D caught a stomach virus last week, ended up in the hospital. In total, he went 5 full days with 0 caloric intake (well, less than 50, in any case), with his first real calories coming today. We may even hit 300 today.

It never gets easier. It never gets easier to hold him through his fears. It never gets easier to not be able to do anything to take away his pain. It never gets easier to know more than the doctors.

We’re fast approaching all the anniversaries.

The bittersweet NICU memories, culminating in two sweet babies under the Christmas tree just as the sun set on Christmas Eve.

The day some doctor had the gall to accuse me of neglecting my son.

His tubeiversary.

The missed Christmas, with the picture of Santa in full contact precautions.

Eight years. I have been doing this for eight years.

And it is never easier.

 

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Shared

Every Monday at school, the class gathers around and shares what happened that weekend, or something they’re looking forward to in the week ahead.

Every Monday morning, I watch my twins negotiate the delicate path of separating their overlapping lives. “I’ll say we went apple picking, you tell them about the pie.” “I didn’t really like that movie, so you can talk about that, and I’ll talk about playing in the leaves.” It doesn’t always go smoothly, but most often they are able to divide topics among this imaginary line. This is yours/this is mine, even though both are really ours.

In this world, we’re so constantly pressed to share. Our photos, our memories, our deep thoughts, and our mundane tasks get put up for public or semi-public consumption. I constantly struggle with knowing what is mine to share and what is more rightfully someone else’s. Even if it is their story, are my thoughts and feelings about it mine to share? Where is the line?

I try to set boundaries and stay within them. No pictures of my children that they may someday find embarrassing – no nudity, no pictures of them sick or in the hospital, no pictures of them crying or in trouble. No public discussions of potty training, circumcision, or anything regarding the private areas of their bodies. No stories that may embarrass someone else. No discussions of my marriage or sex life.

Still, I struggle. Our lives are so intertwined that teasing out what is specifically mine is so often too complicated, and I end up walking away without having said anything at all.

It’s interesting watching them navigate it so easily. Is this the effect of growing up in an over-shared society? Much like their innate ability to manipulate a touchscreen and pick up on the finer points of Minecraft, will they grow up having this instinctive knowledge of how to extract their individual story from the larger mesh?

I’m glad to see it, proud to see it. So many people share indiscriminately and thoughtlessly, unconcerned about how the other person may feel. Instead, they carefully discuss and agree before any information is shared, so no feelings are hurt. It’s curious and heartwarming to see them so concerned about respecting the boundaries of others. I can only hope they continue along this path, thinking before sharing.

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When I Die

I’ve always said that when I die, I don’t want a funeral. No services. Because who would come? Why spend all that money when no one would come? Take the money, go on vacation.

An old family friend is dying, and it’s really depressing to watch, even from afar. All her old friends making time to visit her, to say goodbye. But the thing is – where were they these past 10 years? If you haven’t seen someone in 10 years, why are you going to say goodbye? To make yourself feel better? If you care about someone, care about them when they’re alive, not when they’re dying and dead.

I’m watching my mother watch her friend die. I’m watching my mother know that it’s been 8 years now since her accident. It should have killed her. She should have been dead several times over by now, and she’s not. She knows she’s lucky, but she knows, like her friend, she can’t keep cheating death. It will catch up with her eventually.

She keeps saying, she’s going to have the surgery the doctors brought up a few months ago. The surgery that, if it works, will give her a higher quality of life. The surgery that, if it fails, will kill her. The odds are about 50-50. I think she’s hit a point where she just doesn’t want to go on like this anymore, too healthy to be dying, too sick to be living.

She feels forgotten, invisible. I can understand why. I talk to her every day, usually two or three times. I do what I can, but I’m only one person.

I’ve promised her, when she dies, I won’t let people pretend like they cared when they didn’t. No bullshit from my father’s family, or her estranged brother. No teary eulogies from people who can’t be bothered to call her or take her out to lunch now and again. I’ll take down her facebook page so people can’t keep leaving messages “to” her as if she could read them … when no one sends her messages now.

I can understand where she’s coming from. You can only go on so long being invisible before you start to feel like no one would notice, much less care, if you were gone.

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Trying to Breathe

Things will school are still mega-stressful. Basically at this point, we’re probably stuck with the aide he has, and it may not end up being a hugely bad thing because at this point, there is no conceivable way she doesn’t understand what needs to be done.

Which is not to say we’re not putting all our ducks in a row for levying medical neglect charges if something goes wrong, and putting together an absolutely bullet-proof IEP going forward. Because. The fact that his doctors are the ones saying “neglect” means I’m not just being a helicopter parent here.

A lot of other stuff came up too, largely amounting to “we’ve hit his limits” (physically, not academically or mentally), which is really disheartening in a lot of ways, even if it’s not surprising.

Gym class sucks and is fodder for future therapy anyways, amiright?

Top it all off with a major fight with a friend, and this week has been.

Well.

I need to breathe. I need to stop trying to DO and just BE. And I’m trying.

I’m trying to spend more time outside, because we’re having a rare and glorious fall. Temperatures low enough to make the foliage turn, but warm enough to still enjoy being outside. I’ve been chasing N around the field, finally not having to stay up his butt to keep him out of traffic.

I’ve been taking my camera out more for thing that aren’t my children, because with a camera in my hand I’m more likely to stop and really LOOK. Breathe. Notice.

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I don’t want all this stress to define everything. I don’t want to get so caught up in it that I miss everything else.

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Eclipse

Space has always fascinated me. The first time I truly became aware of it was when my dad took me into the backyard to see Haley’s comet. I just remember standing there, staring at it, amazed … and thinking I’d be dead before people saw it again. (80 sounds ancient to a child, after all.)

In high school we tramped out through dark woods to find a clearing to set up telescopes and see comets and stars. In college, I took astronomy to learn how to identify what I was seeing with some amount of reliability.

I wanted to be an astronaut. (Until I realized I was terrified of flying.)

I stayed up last night to watch the eclipse. To watch the moon slowly sink into shadow, only to become visible again when it was fully hidden. To marvel at all the stars that became visible once the reflected light from the moon was gone.

Kind of amazing, all the things that can be seen when you block out the distractions.

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The Long Long Road

A fellow mom in the schoolyard had a baby over the summer. The baby is now 2 months old ..

and bigger than D was on his first birthday.

It’s never not going to be a gut-punch to hear other baby’s statistics, but over time it’s largely become a source of pride. “Look at how far he’s come … how far we’ve come.” Today he hit 21 kg again. Today he racked up another centimeter in vertical growth. All good things.

Somehow, though, seeing that baby is hitting harder than usual, because the school – the place where my son is supposed to be safe and cared for (and that care backed up by a legally binding document) – is putting all our hard work at risk. What’s more, the staff member behind it has persisted in lying, and the administration is standing behind her despite the fact that they cannot deny she lied. In short, they’re basically saying it’s fine that she lied about something that directly impacts my son’s health.

Sometimes I feel like keeping him out of prek was a mistake. Maybe I should have marched over there on his 3rd birthday and let them evaluate him. Let them clean the vomit out of their carpets again, because at that point, he was puking 3-4 times a day on average, more on days when we left the house. (Shoes were a huge vomit trigger.) Let them stick to the strict every 2.5 hours feeding schedule. Let them catch his vomit, measure his vomit, and refeed his vomit, because we could not afford to lose the calories and electrolytes. Let them do it, just for a day or a week, to understand the depth of the problem.

He would not have thrived there. They would have failed him. I had no doubts then, and I have even fewer now. But perhaps, if they had seen just how sick he was, they would have an inkling of why we “helicopter” and “micromanage” things now. He didn’t get better by magic. There were no fairy godmothers or wish-granting genies. And he won’t stay well without continuing that hard work.

Calculating his calories is an on-going problem. Right now we’re actually trying to decrease them, which is a new problem, because his weight gain is exceeding his vertical growth at the same time his age is dictating a lower caloric need. When you have no hunger instinct to rely on, it’s a lot of math, a lot of weight checks, and a lot of trial and error until you hit on something that works.

And we’ll not even talk of trying to get him to eat. He’s started eating bagel pizzas now with cheese, which is an amazing step forward. We only successfully add one new food every 6 months or so. So now we have bagel pizzas and hot dogs that start to approach full-balanced-meal territory (that need to be supplemented with caloric milks and such).

It’s so damned hard.  It’s hard all the time. It’s hard to not be able to just drop him off at school or at a club or class and leave – because we can’t leave unless there’s an adult there who knows how to care for him. It’s hard to have to talk to the kids about the word “midget” and why it’s not nice or ok, and why they need to tell a grown up next time someone uses it in reference to D. It’s hard to hear that his friends have started calling him “Little D”. It’s hard to sort laundry and not be able to tell the difference between his clothes and his 4-years-younger brother’s.

But most of all, it’s hard to do this every single day because he needs me to do it every single day, and then have someone come along who feels like it doesn’t matter, or she can’t be bothered. To not have the power to immediate eliminate that person from his life, because no one else can be bothered to care, either.

I won’t stop, but at the moment it feels like an endless road with no hope, and no help.

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The Night Before

My baby turns 4 tomorrow. I tucked in a 3 year old for the last time a little while ago, and that’s just that. Tomorrow, he’ll be 4.

Last week was a bitch of a week, and I expect this week to be much the same. But no matter how many hours I spent on the phone and composing emails and figuring out my legal options (ahem), I was NOT going to let them ruin my child’s birthday. So, somehow, I’m not sure how, I pulled it together.

The house got clean.

The cake got made, along with a few dozen cake balls.

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Pin the tail on the Angry Bird got tacked up on the wall, and the live-action Angry Bird Game structure got built in the yard.

And we had a party. A big old  lot of cake and ice cream and presents and games and laughing party.

That boy. Since the day he was born, he has made me laugh. Before him, I was missing something. I wasn’t happy. I wasn’t whole. And he came out and was put in my arms and there it was, the piece that had been missing.

He laughs with such joy. He bursts with energy and passion. He is intense and determined. There is no ok or halfway with him – it is 100% all the time.

He is my baby, and he is getting so big.

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