Ten years ago today

Ten years ago today, my son died.

You can read about it here and here and here.

I'd like to say that I'm able to dedicate my entire day to thinking about him and looking at his pictures, but I can't do much because the living kids are demanding my attention.

Mac's first day of school is today, and Kaz left for some sort of male bonding thing with school, (all the grade 7's go away for a few days to get to know each other and start off the school year.) And Julius wants to be fed and cuddled and hugged and play with me.

I am going to go visit his grave now, and tidy it up, and leave some flowers.

Sometimes it feels like yesterday and sometimes it feels like a million years ago. Mostly, it just feels like it happened to someone else.

I never thought I would terminate a pregnancy. No one ever does I guess.

Couldn't write yesterday, maybe today?

I'm back home, swollen and bruised, but alive. We all survived our trip. I'm running around getting everyone back to school & work, dealing with electricians and repair people, and yes, going back & seeing my RE soon, next week in fact. Oh yeah, and there's a provincial election happening soon. Forgot about that.

All this activity...I'm great at keeping busy when I can't stand to be alone with my thoughts.

The bustle in a house
The morning after death
Is solemnest of industries
Enacted upon earth, -

The sweeping up the heart,
And putting love away
We shall not want to use again
Until eternity. - Emily Dickinson

Yesterday was the anniversary of Matthew's death, 9 years ago he died the day he was born. If you've never read it, you can find the story under the label Pregnancy #2 on my sidebar. I've written a lot about him and all he meant to me.

Today is the anniversary of Georgia's death, 3 year's ago today, we discovered she had died in utero when we went to get our scan just prior to the amnio. I've really written very little about her. I had written a post before, then taken it down, and now, bits and pieces sit here on this blog & in my drafts, not really right somehow. I can't seem to get it out properly. I know I need to, but it's so much easier to just repress it all and pretend nothing happened? Right?

I know, wrong, I know.

I'll try to write something.

Maybe.

Maybe I'll just run screaming into the street instead.

The proof I didn't want to know

This post describes the events that happened shortly after Matthew died. It's also going to double as my Blogging for Choice contribution.





The day of the funeral, I started having cramps and bleeding, more than I should've. I called the OB/Gyn, Dr. C , who performed the termination and he got me into an ultrasound clinic across from the hospital that morning. The radiologist told me that I had retained placenta. We went over to see the OB/Gyn who gave me a prescription for Cytotec again and told me to take some more that night and not worry, it would probably come out.The thought of having anything still inside me completely freaked me out, since I was worried it might be a part of the baby. (Which of course was impossible, we'd seen him with all his fingers and toes, but still...)

My poor husband on the other hand, was terrified we'd miss the funeral. I guess the part about his wife hemorraging went right over his head. His Dad was coming to the funeral and he was freaked out about being late to meet his father. The things that go through your head when you are grief-stricken---hmm?

We got to the funeral on time, and the cemetary as I mentioned before. About a week later, I realized I was still bleeding to heavily and went back to Dr. C. He was mystified, but sent me for another ultrasound, and lo and behold that little tiny piece of placenta was still hanging around. More Cytotec, and antibiotics this time, just in case. He told me he didn't want to risk a D&C because I was so far along in the pregnancy that my uterine walls were very thin and there was a risk of perforation. I know many people get 2nd trimester D&Cs but the further you go into the pregnancy the riskier they get especially with a damaged placenta, and the risk was manageable until 4-6 weeks after the pregnancy when the risk goes back to normal. In my case, we ended up waiting for 2 and 1/2 months, while we kept trying round after round of Cytotec.

I eventually got my D&C and it turned out to be the tiniest little piece of placenta ever, but as Dr. C noted, it was more firmly attached than anything he had ever seen, even a placenta accreta. And then we had the talk...when I asked what this would have meant if I had carried Matthew to term. It turns out that my placenta was coming apart as I gave birth to him, and parts of it were stuck, and that would've meant not just a hemorrhage, but also in all probability a hysterectomy after a radical c-section to deliver a dead or dying child with hydrocephalus. Hydrocephalus which would've swelled his head and prevented a vaginal birth or a regular c-section. This surgery would've taken place after I had already experienced severe blood loss.

It's been very hard to publish this post all day, because I'm having trouble facing what might've happened, & not just to me. My little son, my darling 6 year old who loves gorillas and art and wants to save endangered animals, wouldn't exist. I needed a uterus to have him, and God help me I can't contemplate a world without him. This proof of the risk to all our lives is the worst part, the final word, the end to my hope.

Protecting choice isn't just about women, or our current family when we make our choice, it's about protecting our future fertility, about making sure our future children get to exist.

Thank God I live in Canada, where my right to choose to end a pregnancy is protected at this point. And I hope someday ALL women around the world get to choose to have children, or not, get to stay pregnant, or not.

Covering my tracks

My brown/grey roots are showing. I'm getting them reblonded today, so I'm off and running...and I'll be back this afternoon. (As an aside, why do people equate haircolour with brainpower? I hear that lots of politicians and actresses are going dark, so they'll look more "serious". That makes NO sense to me. )

Just had an odd experience and I wanted to share it. I've had some hits on my Statcounter from an Australian forum on birthing, but I had never heard of it. When I clicked the link, and it said I was denied access to the thread, all my red flags went up. The last two months have been a little paranoia inducing I'm sure you would agree! Anyway, after emailing them and poking around some, I found out that they are a well run forum, not a troll site at all, but I still couldn't get access to read what they were saying about me.

And then the light dawned...they have a private section for women who have been through losses, and for midwives, etc. to discuss those issues. That must be where the link is coming from, I assume. So, hopefully they are reading with a good heart and good intentions. And maybe taking something away for a worthwhile discussion?

I do wish I could see what they think though. And hey, if any of you reading this are from that forum, please email me or leave a comment to say hi. It will make me a little more trusting, really.

I did want to expand a bit on that midwife issue from Matthew's story. I do not believe that is how a typical midwife would act. I have been told that even after transferring care, she should not have left me on my own. But she, as an individual, did abandon me, and it doesn't do any good to whitewash the situation, right?

Unless we're whitewashing the roots of my hair!

(Yes, I'm trying to find some humour in the situation. Work with me people!)

I have a right to my anger and so do you

This weekend all hell broke loose in the female blogosphere. Trainwrecks has apparently closed, (we'll see) supposedly through the efforts of various other people who were furious about the way that many bloggers had been treated. When I say bloggers, I use the term loosely, since most of the attacked were women who went online and spoke the truth about their lives.

Yes, some of them were mommybloggers and some were nice people whose comments had gotten out of control after an offhand remark by someone. A lot of them were grieving angry women who did not fit society's idea of how a woman should act when her child dies. One idea I remember, "Grief is messy. Not all of us are going to sob quietly & crumple gently at your feet. "
And then yesterday, Manuela at Thin Pink Line decided she couldn't take the hatred others were spewing at her for now, and she has gone password protect. I have it, and some others. The only way to get it, is to email her at seekingpinkline@gmail.com or email me and I'll forward it to her. And no there are no guarantees she will give permission to anyone. I love Manuela and I am sickened by what has happened, not just because my friend has been hurt, but because she said many things out loud that women aren't supposed to say. She described her anger and her hurt and her bitterness over the loss of Shoelet and the people who never understood her feelings about being an adoptee.

The best blog in Canada is no longer open for the viewing public. On the best blogs in the female blogosphere can't be seen, because when women don't act the way they are "supposed to" God knows society has to put her in her place, and crush her underfoot. I know this all to well, since I've lost children and been crapped on IRL and out here in blogworld when I've tried to talk about it.

So, in solidarity with Manuela, here is how I reacted when Matthew died. I know that the preceding posts have sounded like I was calm and accepting, but really, I wasn't.

I was filled with rage, utterly incoherent. From the moment of our first ultrasound, I was crying and screaming, staying up until all hours of the night, unable to sleep and unable to figure out who to blame. The problem is there is NO ONE to blame or be truly angry with, but that didn't stop me from trying to find someone.

I'm short and tiny, delicate boned with no muscles at all and I took an entire wall down in our basement with a crowbar. A foundation wall. It wasn't pretty.

I blamed myself for popping out an old defective egg, I blamed my midwife, my doctors, my husband.

I blamed myself for my "choice" to terminate, I blamed the world for telling me to hide and be ashamed. I blamed my workplace for being shitty to me in a time of crisis.

I blamed God, the asshole motherfucker who decided to let THAT egg out of my ovary that month. He let it meet that sperm. Why couldn't the stupid sperm just swim by? It had every other time.

I was filled with rage, but there was no one to rage at, so I raged at myself and people passing by in my life. I raged at my "so-called" friends who were too busy to attend the funeral. I raged at the ones who came to the funeral because they didn't know what to say. I raged at Doctors who couldn't "fix" him. At government agencies who couldn't show me tiniest piece of compassion and let me be called a mother in a passing conversation. At bureaucrats who called my son's death minutiae, too small to matter.

And eight years later I like to pretend it's "all better", but it's not. I will never be over it. I will not fit society's straightjacket for grieving mothers, or good adoptees, or impersonal robotic political junkies. I will talk about my dead children and you will not get to dismiss me as a rare exception or crazy, or "depressed." (The label de jour whenever a woman expresses a socially unacceptable thought, both denigrating our legitimate emotions, and the real life sufferers of mental illness.)

All women get to be angry and show it. I don't have to be a good girl or a bad one, I don't have to smile, or shut up and sing the song you want me too.

And neither do you my friends.

Matthew - Part Two

Originally posted July 14, 2006, and deleted, and rewritten, and now reposted.

After we got the final definitive diagnosis, my husband and I tried to find information on Trisomy 18, but back then, the internet was pretty empty. Hard to believe, but I swear to God, Dr. Google didn't exist yet and Netscape couldn't come up with anything helpful at all. Most of what we found related to infants and children with hydrocephalus, or adults who had hydrocephalus and had gotten a shunt. They seemed fine, or at least a plan could be made to help them. There was nothing that could be done for in utero hydrocephalus. This is still true to this day, especially for a baby with a chromosome defect, because they can't survive the in utero surgery. In the future, who knows?

So I met with the specialist, and signed the papers.

I started at home, using Cytotec intravaginally. A big mistake, emotionally. Very easy, from a physical perspective. A few minor cramps and when we went to the hospital the next morning, I was already dilating. I wish the doctor had put the medication in though, it would relieve some of my transient guilt. Why guilt? I would love to be able to answer but I waver all over the place on this. It's incredibly hard to match your emotions and your intellect on these things.

At the hospital, I had a lovely room, filled with sunshine. Throughout this whole experience, the sun was shining, it was beautiful weather, which makes no sense. If my son was dying, shouldn't the whole world stop spinning, shouldn't the sky be filled with clouds and darkness?

My husband was by my side, with the camera at the ready and my dear friend S. to help. The Doctor broke my water, gave me some more Cytotec, and labour began in earnest. I had insisted on a walking epidural because labour at 21 weeks is still full labour, but most of the time epidurals are not standard for this kind of thing. Usually they hook you up to an I.V. pain pump and leave you to vomit and hallucinate from the morphine. I insisted on getting the same standard of care any women giving birth would, because I didn't want to be shoved away in a corner, as if my pain didn't matter, or as if something shameful was going on.

I actually made it through part of the labour without an epidural though. And because my back wasn't a mess this time, I was okay for a few hours, breathing through contractions. Sometimes I think that this part was a gift I was given, to make up for my unusual labour experience the first time around. Yes, I have tried to find gifts in this experience. Moments that were healing in some way. Very very hard to do.

Eventually I got the walking epidural. I gave birth about an hour later, no pushing required, he was too small to need it. He was tiny and perfect looking on the outside, unfortunately not so okay on the inside. If I hadn't seen the ultrasound closeups with the problems, I might not have believed it myself. We took dozens of pictures, and the nurse helped us make handprints and footprints in clay impressions. We baptized him, and after about 6 or 7 hours, I finally handed him over to the nurse, for weighing and measuring. Although he was 21 weeks in gestation, he weighed less than a pound, closer to a 19 weeker.

After they unhooked me from the IV and the epidural, I took some time to rest, and eventually I was discharged. I wanted to leave that night, because I knew that all the new moms and their live babies would be leaving in the morning. I couldn't stand the thought of seeing them. It was still a possibility that night, but two of my nurses, those wonderful blessed angels, went ahead of me, checking around every door and hallway to ensure I wouldn't see anyone I couldn't handle. They walked me right out to the door, making sure my husband had the car waiting.

A few days later, we held a funeral at our church, he was cremated and buried in a local cemetary near our house. We invited some family and friends and we all went out to a beautiful little restaurant nearby for some food, and to talk a little. Then we went home, without a baby, and tried to figure out what to tell our son about his little brother. At two, he couldn't understand what happened but he knew there had been a baby in mommy's tummy. And now, there wasn't.

Where was our midwife? Well, she disappeared soon after that first disastrous ultrasound. She told us she didn't know what to do because she "only takes care of normal babies."

Ouch

I guess all that emotional support midwives are famous for wasn't in her repetoire. Since then, I've discovered titles (like nurse, dr., ob/gyn, midwife, priest) are irrelevant and the heart is what matters. We all have the ability to be kind to others. We can choose to be gentle to our fellow human beings, or not. Compassion is the mark of a real professional, not a degree.

A few notes

-- I've been reluctant to post more about my losses in the last few days because after I posted Matthew Part One, someone unsubscribed from my feed. I know many of you understand about my decision, but obviously one person didn't. Just like in real life, sigh. I wish they had emailed me with the reason why, I don't know who it is, because it was a private subscription. I do feel sad over it. I knew why some people hide their pregnancy losses, and why some people hide their terminations and tell everyone they lost the baby instead, but this has been a sharp reminder.

-- And for a few of you who may remember the first time I put this post up, yes, originally I had told his story with a fake name, and altered a few details; I was so paranoid about privacy. But I realized it doesn't matter, so yes, his real name was Matthew, and this is the real story. If you can't handle it, I can't help that.

-- Yesterday, I went to the endocrinologist again about my thyroid. She hadn't read my history, didn't remember my case, and had no idea what to tell me. After I reminded her again of everything, she basically said that I should have the RAIU & scan done again to see what's happening, but why bother? She thinks my symptoms are hormonal, and barely agreed to blood tests.

Oh, and I should just get pregnant. That might solve everything.

No, I didn't freak on her, I was too floored. WTF is wrong with Doctors?

--This explains why I'm hungover today. I went out with some political friends from the campaign last night, and intended on having one glass of wine and coming home early.

But I didn't. I had 3 and a half.*

The taxi poured me out in front of my house at 2:30 am. There are some VERY strange pictures on my new camera. There is at least one national newspaper columnist and several political staffers who probably wish I had lost the damn thing.

But I didn't. hehe

And as soon as my headache dies down I have to get them online, methinks.

*Yes, I am a cheap drunk. After 10 years of pregnancy, breastfeeding, and IF treatment what did you expect?

It's one of those days

I'll continue with Matthew's Story-Part Two tomorrow, I have to stop for this. I'm obsessing, and I need the help of every political set of eyes reading this blog, every grieving mom, every lawyer, anyone out there. Read on...

I've been no where in blogland today (partially because bloglines can't pick up feeds today??), but mostly because I've been desperately reading federal legislation all day. The reason why; because this story appeared in The Toronto Star, about a woman who wants maternity and parental leave benefits extended to women who have high-risk pregnancies and babies in NICUs. She says the benefit doesn't exist, except that it DOES! And I'm having deja vu, the whiplash kind.

Many years ago, I found out that EI maternity and parental benefits were a mess for women who had lost babies, either through miscarriage, stillbirth or neonatal loss. I still remember the bureaucrat at HRDC who informed me that I could not receive parental benefits after my son died, because I "wasn't a parent".

Guess she didn't read my last post.

I was allowed sick leave benefits after a miscarriage, and maternity benefits after a stillbirth, but parental ones only if the baby lived, and then only for as long as he lived. Apparently, the day after your baby dies, you are considered "able" to go back to work. Yep, mourning takes just a day or two, and we're "over it." Or at least that was the explanation I got from the woman at the EI office. (Bet a few grieving mommybloggers have some opinions on this one, hmm?)

She was confused about why I was crying, and I was too broken emotionally to reply. (Looking back I wish I had hit her in the head with an anvil...ahh, the regrets we carry around---)

But back to legislation, months after I lost Matthew, I met the Minister for HRDC at the time, Jane Stewart, and ended up telling her the whole story. I had intended on being really professional but, instead cried in her arms. And she was great, really amazingly kind. I would crawl through barbed wire for that woman, now and forever.

And not just because she was kind, but because she ended up trying to help. A few years later, the govt. extended all maternity and parental benefits in Canada, which gave me and other women a little more time off for pregnancy, for living kids and the lost ones, to mourn and recover. Then a short while later, she introduced a new set of regulations, included in the budget bill in 2002 (so I know it passed into law) that allowed women to take an extra number of weeks off, for every week their child is hospitalized in a NICU, or any high-risk situation in that first year of life. One year of maternity leave had legally just been extended to two if a Doctor said you needed to be with your premature baby, or needed to use up your maternity leave while on bed rest with a high risk pregnancy.

I pitched it, I convinced her it needed to be passed, and a new program was created. The next time I saw the Minister, I wasn't very ministerially respectful, and I hugged the stuffing out of her! So what's the problem? I CAN'T FIND IT in the current EI Act, amendments or regs. It's gone, or it got folded into the idiotic 2004 Compassionate Leave Program, (6 weeks max. WTF is that?) or else a bureaucrat stuffed it into a desk and prayed no one would find it.

And God knows The Star as no interest in figuring out why their story wasn't complete. Stephen Harper won't bother with this, and neither will most of the MPs I know. My eyes are blurred after staring at the screen for 6 hours straight, I'm exhausted. At this point, I've read dozens of Acts of Parliament, days worth of Hansard, and every regulation at HRDC. Any ideas? You're welcome to comment, link to me, or just email me, and help save a few mommies and premature babies.

Matthew - Part One

Originally posted July 14, 2006, and deleted, and rewritten, and now reposted.

My second pregnancy happened in 1998. This time I was going to have the perfect midwife birth, yeah, right....because all you need to have the perfect birth experience is a midwife. God I was so naive.

I had severe nausea and vomiting and some days could barely work. I remember lying on the bathroom floor with my face on the tile, praying for someone, anyone, to rescue me from this fresh new hell I was trapped in. I had a little nausea the first time around, and a strange aversion to certain scents and foods, but nothing like this nightmare. A whole lot of anti-nausea medication later, I could function. Diclectin is wonderful, and truly really a blessing. Motherisk reassured me it was safe, one of the most studied drugs in pregnancy, ever. (Incidentally, a wonderful resource for anyone from anywhere around the world, who wants to get some advice on drugs and pregnancy. Click, phone, email, they are the best of the best, anywhere.)

I didn't want an ultrasound, but the midwife was so worried she sent me to the hospital clinic at 18 weeks. And then the bad news began.

Our baby had hydrocephalus, which had crushed his developing brain, he had major problems with his digestive system, and he couldn't move very well. They kept referring to his poor posture. In my head I'm thinking, "He's not supposed to sit up straight, he's a baby. WTF is wrong with these Doctors?" I learned later "posture" refers to the general look a baby has in utero, movement, position, etc. The radiologist told us right there and then what she saw, but we didn't get the full scoop until we saw the entire high-risk team the next day.

Our baby had full Trisomy 18, Edwards Syndrome, a fatal chromosomal disorder. We could have a bunch of other tests to confirm but they were very sure, since his hands and feet had a typical sign, with the forefingers and baby fingers tucked under the rest of the hand. Stupid me, I asked, "Why don't you just fix his fingers?" Answer, "Because he has no brain. Fixing his fingers won't help."

"Oh"

But we wanted to be sure, so we had an amniocentesis, and a stack of blood tests, and a color doppler ultrasound of his heart. That showed more bad news, he had a major heart malformation. The placenta we shared was also very damaged, and after that test, the doctors made it clear that I couldn't be further than 15 minutes away from a level 3 NICU and a major OB hospital for the rest of the pregnancy. I didn't understand until later that this was because I could have died from bleeding after a placental abruption.

The amnio results 10 days later confirmed Trisomy 18 and that he was a boy. We named him Matthew. He was terminally ill, and it was made very clear to us that while the hospital would support whatever choice we made, the end result would always be the same. So we made the decision to terminate the pregnancy, or rather I did.

No matter what my husband thinks, really in this a woman is always alone. It was my signature on the consent form, and my body. I had another living child, and this baby was fatally ill. If he could've been saved, I swear I would've hung upside down by my ankles on bed rest and flown in the best surgeons on earth. But it wouldn't have made any difference. Termination at 21 weeks, or birth at 40 weeks, or after many futile operations in a NICU is still a dead child when Trisomy 18 with complications is the diagnosis.

There is a website here, that describes in very blunt "take no sides" scientific terms what chromosomal abnormalities are, and the odds of survival and complications of each variant from full to mosaic. I wish everyone who "thinks they know what they would do", could read this site, and discover why women terminate pregnancies after trying so hard to have the baby. I have a feeling they won't, since it is so much easier for them to assume, to hold onto their prejudices, than to learn the truth.

The truth is that every pregnancy with a diagnosis of a birth defect, small or large, is risky. Placentas and fetuses develop from the same cells, and a baby with a defect, means a placenta with a defect. Some problems are surmountable, some are not, and that is why the only person qualified to make the decision is the person taking the risk, the mother.

I wasn't going to take the risk of bleeding to death, and put my son through the futile torture of continuing the pregnancy, just to hold a funeral later.

Some decisions we make are done out of love and kindness, no matter what the world thinks.